[House Hearing, 106 Congress]
[From the U.S. Government Publishing Office]



 
                 DEPARTMENTS OF LABOR, HEALTH AND HUMAN
               SERVICES, EDUCATION, AND RELATED AGENCIES
                        APPROPRIATIONS FOR 2000

_______________________________________________________________________

                                HEARINGS

                                BEFORE A

                           SUBCOMMITTEE OF THE

                       COMMITTEE ON APPROPRIATIONS

                         HOUSE OF REPRESENTATIVES

                       ONE HUNDRED SIXTH CONGRESS
                              FIRST SESSION
                                ________

  SUBCOMMITTEE ON THE DEPARTMENTS OF LABOR, HEALTH AND HUMAN SERVICES, 
                    EDUCATION, AND RELATED AGENCIES

                 JOHN EDWARD PORTER, Illinois, Chairman
 C. W. BILL YOUNG, Florida          DAVID R. OBEY, Wisconsin
 HENRY BONILLA, Texas               STENY H. HOYER, Maryland
 ERNEST J. ISTOOK, Jr., Oklahoma    NANCY PELOSI, California
 DAN MILLER, Florida                NITA M. LOWEY, New York
 JAY DICKEY, Arkansas               ROSA L. DeLAURO, Connecticut
 ROGER F. WICKER, Mississippi       JESSE L. JACKSON, Jr., Illinois
 ANNE M. NORTHUP, Kentucky
 RANDY ``DUKE'' CUNNINGHAM, 
California                          

 NOTE: Under Committee Rules, Mr. Young, as Chairman of the Full 
Committee, and Mr. Obey, as Ranking Minority Member of the Full 
Committee, are authorized to sit as Members of all Subcommittees.
  S. Anthony McCann, Robert L. Knisely, Carol Murphy, Susan Ross Firth,
                and Francine Salvador, Subcommittee Staff
                                ________

                                 PART 7A

                             (Pages 1-1658)

               TESTIMONY OF MEMBERS OF CONGRESS AND OTHER
                INTERESTED INDIVIDUALS AND ORGANIZATIONS

                              

                                ________

         Printed for the use of the Committee on Appropriations
                                ________

                     U.S. GOVERNMENT PRINTING OFFICE
 57-710                     WASHINGTON : 1999


                        COMMITTEE ON APPROPRIATIONS

                   C. W. BILL YOUNG, Florida, Chairman

 RALPH REGULA, Ohio                    DAVID R. OBEY, Wisconsin
 JERRY LEWIS, California               JOHN P. MURTHA, Pennsylvania
 JOHN EDWARD PORTER, Illinois          NORMAN D. DICKS, Washington
 HAROLD ROGERS, Kentucky               MARTIN OLAV SABO, Minnesota
 JOE SKEEN, New Mexico                 JULIAN C. DIXON, California
 FRANK R. WOLF, Virginia               STENY H. HOYER, Maryland
 TOM DeLAY, Texas                      ALAN B. MOLLOHAN, West Virginia
 JIM KOLBE, Arizona                    MARCY KAPTUR, Ohio
 RON PACKARD, California               NANCY PELOSI, California
 SONNY CALLAHAN, Alabama               PETER J. VISCLOSKY, Indiana
 JAMES T. WALSH, New York              NITA M. LOWEY, New York
 CHARLES H. TAYLOR, North Carolina     JOSE E. SERRANO, New York
 DAVID L. HOBSON, Ohio                 ROSA L. DeLAURO, Connecticut
 ERNEST J. ISTOOK, Jr., Oklahoma       JAMES P. MORAN, Virginia
 HENRY BONILLA, Texas                  JOHN W. OLVER, Massachusetts
 JOE KNOLLENBERG, Michigan             ED PASTOR, Arizona
 DAN MILLER, Florida                   CARRIE P. MEEK, Florida
 JAY DICKEY, Arkansas                  DAVID E. PRICE, North Carolina
 JACK KINGSTON, Georgia                CHET EDWARDS, Texas
 RODNEY P. FRELINGHUYSEN, New Jersey   ROBERT E. ``BUD'' CRAMER, Jr.,
 ROGER F. WICKER, Mississippi            Alabama
 MICHAEL P. FORBES, New York           JAMES E. CLYBURN, South Carolina
 GEORGE R. NETHERCUTT, Jr.,            MAURICE D. HINCHEY, New York
Washington                             LUCILLE ROYBAL-ALLARD, California
 RANDY ``DUKE'' CUNNINGHAM,            SAM FARR, California
California                             JESSE L. JACKSON, Jr., Illinois
 TODD TIAHRT, Kansas                   CAROLYN C. KILPATRICK, Michigan
 ZACH WAMP, Tennessee                  ALLEN BOYD, Florida
 TOM LATHAM, Iowa
 ANNE M. NORTHUP, Kentucky
 ROBERT B. ADERHOLT, Alabama
 JO ANN EMERSON, Missouri
 JOHN E. SUNUNU, New Hampshire
 KAY GRANGER, Texas
 JOHN E. PETERSON, Pennsylvania     
                                    

                 James W. Dyer, Clerk and Staff Director

                                  (ii)



DEPARTMENTS OF LABOR, HEALTH AND HUMAN SERVICES, EDUCATION, AND RELATED 
                    AGENCIES APPROPRIATIONS FOR 2000

                              ----------                              


 TESTIMONY OF MEMBERS OF CONGRESS AND OTHER INTERESTED INDIVIDUALS AND 
                             ORGANIZATIONS

                              ----------                              

                                           Tuesday, April 13, 1999.

                         EHLERS-DANLOS SYNDROME

                                WITNESS

MEG HARMON, CITIZEN
    Mr. Porter [presiding]. The subcommittee will come to 
order.
    We begin today 10 sessions of public witnesses. We have 
largely completed the hearings with the three departments and 
the 14 agencies under the subcommittee's jurisdiction. And 
today we begin 190 public witnesses. And I must, as my staff 
reminds me, remind witnesses of provisions of House rules. In 
addition, to their written statement, non-Government witnesses 
must submit a curriculum vitae and a statement of Federal grant 
or contract funds that they or the entity they represent have 
received. If you have any questions concerning the 
applicability of this provision or questions as to how to 
comply, please contact the subcommittee staff.
    In order to accommodate as many members of the public as 
possible, we've scheduled about 20 witnesses for each session 
and are still not able to hear from all who want to testify. 
Overall, we will hear from 190 witnesses in this segment that 
lasts over six days. As a result, I've asked the staff to 
strictly enforce the rule limiting testimony to five minutes. I 
would ask that as you testify, you keep this limitation in mind 
in consideration for other witnesses that must follow you.
    And with that, we begin with our first witness, Meg Harmon, 
a private citizen and the Chair recognizes Ms. Pelosi?
    Ms. Pelosi. Thank you very much, Mr. Chairman. Mr. 
Chairman, I want to first of all commend you for the series of 
open hearings with public witnesses that we will be engaged in 
the next week or two and to particularly thank you for giving 
priority to the Ehlers-Danlos Syndrome and the presentation 
being made today by Meg Harmon. She's accompanied by Maggie 
Buckley, the Ehlers-Danlos Syndrome of the National Foundation. 
And I want to commend publicly Meg for her personal courage in 
sharing her story with us today. She is a leader on this issue 
in our community in the San Francisco Bay area. When Members of 
Congress come to California, she has generously shared her 
personal story. And I particularly am pleased that so many of 
our colleagues have heard from their constituents about Ehlers-
Danlos Syndrome are here to hear Meg's presentation.
    Heeding the chairman's admonition about time, with that, 
Mr. Chairman, I'm pleased to introduce Meg Harmon.
    Ms. Harmon. Chairman Porter, members of the committee, 
thank you for this opportunity to be here today. A special 
thank you to Nancy for your support and interest in this issue.
    I'm here today on behalf of tens of thousands of people in 
this country, including myself and several in this room who 
have a genetic degenerative connective tissue disorder called 
Ehlers-Danlos Syndrome or EDS. I'm here to inspire your much 
needed support in efforts to put an end to the senseless deaths 
and crippling results of EDS that are a consequence of a missed 
or last diagnosis.
    EDS is a rare disorder, but it certainly isn't new. It was 
first described by Hippocrates in ancient Greece. Yet, it has 
been misunderstood and overlooked by the medical community. Of 
the one in five to 10,000 in this country who have EDS, 
alarmingly and why I have to be here today, only 5 percent of 
us are getting diagnosed. EDS has slipped through the cracks of 
the medical system resulting in lives robbed of quality, 
productivity, and dignity. It's estimated that over a third of 
the people with EDS are disabled and cannot work. But that 
number could be greatly reduced with early diagnosis and proper 
care.
    Granted EDS is difficult to diagnose because it has a 
multi-system involvement. Individuals with EDS have a genetic 
defect in the collagen of their connective tissue which 
supports blood vessels, muscles, ligaments, internal organs, 
and skin. The manifestations of this disorder are devastating 
to a person's body. Some individuals have tissue fragility 
which causes organ rupture and early death, usually before the 
age of 40. Other manifestations include premature joint 
degeneration, atrophy, instability, and dislocations throughout 
a person's body, as well as abnormal tearing, bleeding, 
bruising, and scarring of the skin. The most prominent 
manifestation though for all people with EDS is chronic and 
severe pain through much of a person's life.
    EDS may be overlooked because of a lack of understanding by 
physicians, rarely is it mentioned in current medical 
curriculum and physicians just don't look for it when 
differentiating symptoms from other connective tissue related 
diseases. This could be because EDS does not have a known 
treatment or cure. Therefore, physicians may believe if I can't 
fix it, don't look for it. But the reality is that so much of 
the destruction to a person's body could be alleviated with 
early diagnosis.
    It may also be overlooked because initially most of us do 
not present ourselves in appearance or even under the scrutiny 
of X-rays as having anything wrong with us. But the instability 
of the connective tissue system causes imperceptible changes 
which result in permanent damage and pain. So because the 
internal trauma of EDS is so invisible to others, one must have 
a physician who has the willingness to listen, to believe in 
the person and give credence to their pain before an accurate 
diagnosis can ever be made. And, unfortunately, this rarely 
happens.
    Too often, a diagnosis of EDS comes only after three or 
four generations of premature deaths or after one has been 
braced in different parts of their body just to hold themselves 
together. Too often a diagnosis comes after one has spent years 
going from one doctor to another, in my case, over 30 years 
just seeking some help or answer. Too often, a diagnosis comes 
after one has had unneeded surgeries or repeated surgeries and 
treatments that cause irreparable damage and even death to 
people with EDS. Because of our skin involvement, too often a 
diagnosis comes after one has been accused of self-mutilation 
or one's family accused of spousal or child abuse. And because 
we're not believed about our pain and what our bodies do, too 
often a diagnosis comes after we've been told that we're 
emotionally unstable and should seek psychiatric care.
    These situations are incredulous to me, and I hope that 
they are to you because it's an all too common reality for all 
of us with EDS. Nearly every person with EDS has a horror 
story. Researchers believe that by the specific study of EDS, 
not only would we benefit with better diagnostic tools and 
treatment, but that there would be a better understanding of 
other connective tissue related diseases. And at a bio-
molecular level, a better understanding of arthritis and its 
treatment, of premature membrane rupture, of premature births, 
as well as wound healing in the elderly.
    In summary, we urgently need the NIH and the CDC to earmark 
ongoing funding for research and education into Ehlers-Danlos 
Syndrome and to fund a registry of patients with EDS in order 
to facilitate accurate diagnosis and treatment.
    I thank you for this time, your considerations, your 
support in helping us erase the ignorance about this disorder, 
enabling those with EDS to live longer, more productive lives 
and in turn ensuring a healthier, more compassionate society.
    Thank you very much.
    Mr. Porter. Ms. Harmon, thank you for your testimony. 
You've educated us greatly about EDS. I feel certain that Ms. 
Pelosi will be submitting language to be contained in the 
report accompanying the bill. And I have to say that your 
testimony was extremely articulate. You didn't look at a single 
note and didn't miss a word, and we're very impressed with 
that.
    Thank you very much for coming today.
    Ms. Harmon. Thank you very much.
    Mrs. Lowey. Mr. Chairman, just briefly?
    Mr. Porter. Mrs. Lowey.
    Mrs. Lowey. I just want to associate myself with your 
remarks and thank Ms. Pelosi for her introduction and Ms. 
Harmon. And I would like to join you in support. Your 
presentation, I agree was so articulate. In New York, I have 
received over 300 letters. And I cannot tell you again and 
sufficiently how very important your advocacy and your 
education for us is so that we can help you help all those 
thousands of people who have been diagnosed or remain to be 
diagnosed.
    And we thank you so very much.
    Ms. Harmon. Thank you so much. I appreciate it.
    [The prepared statement of Meg Harmon follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. Next, we want to have two witnesses come to the 
table at the same time: Dr. Victoria Molfese, a professor of 
psychology at the University of Louisville and representing the 
University of Louisville; and Martin L. Bell, deputy to the 
superintendent of the Jefferson County Public Schools in 
Kentucky.
    And the Chair would recognize Ms. Northup?
    Mrs. Northup. Thank you, Mr. Chairman. As members of this 
committee may remember, the Secretary of Education on a number 
of occasions has pointed to Kentucky as the model state in many 
ways for whole school reform. I was part of the Kentucky 
General Assembly when that happened in 1990, and not only do we 
spend a great deal more money, we profoundly changed our school 
system. And in that process have raised Kentucky school 
standards considerably.
    That effort has been made at every level from the 
university down to our primary and secondary schools. Today, we 
know more than ever that early childhood education is an area 
that we need to know a lot more about, and we need to invest in 
and invest in a way that makes a difference in a child's life.
    And so it is a thrill to me that the University of 
Louisville and the Jefferson County Public Schools have 
launched a project to develop an early childhood center, 
collaborating, both what goes on in the classroom with how we 
research and how we get answers about what works best. Joining 
U of L in August is going to be Dr. Victoria Molfese, who is an 
outstanding professor of psychology. And she has published two 
books. She has published 39 professional articles. She has a 
degree, a doctorate in development psychology from Penn State 
and she will head up this effort.
    Joining her at the table today is Marty Bell, who has been 
with the Jefferson County Public Schools for 12 years. He is 
the deputy to the superintendent. And I have had the 
opportunity to work closely with him as we have so profoundly 
changed the educational system in our State and particularly in 
my district.
    And so they are here to talk about this very exciting new 
research and project that is going on collaboratively between 
Jefferson County Public Schools and U of L.
    Thank you very much, Mr. Chairman.
                              ----------                              

                                           Tuesday, April 13, 1999.

                       SCHOOL REFORM INITIATIVES


                                WITNESS

MARTIN L. BELL, DEPUTY TO THE SUPERINTENDENT, JEFFERSON COUNTY PUBLIC 
    SCHOOLS, KENTUCKY
    Mr. Porter. Thank you, Mrs. Northup. Please proceed in any 
order you wish.
    Mr. Bell. Thank you, Representative Northup, Mr. Chairman, 
and members of the committee. I'm with the Jefferson County 
Schools and in the interest of time, I presented some testimony 
that you already have I think for the record. But I'll try to 
hit some of the high points.
    The project I'm proud to discuss with you today is referred 
to as Jumpstart. It is our childhood program but before I go 
there, I would like for you to know a little about our 
district. We are the 25th largest district in the country, 
serving approximately 97,000 students, preschool through 12th 
grade. We are a county-wide school district, serving the City 
of Louisville and Jefferson County, Kentucky. We are 31 percent 
minority and 49.6 percent of our population is on free lunch.
    Starting in 1993, our district decided to focus our 
attention toward the early years of learning. We started by 
moving Title 1 funds to the elementary schools. We made a 
significant shift there. We decided to offer full-day 
kindergarten. Our State provides a half-day kindergarten 
program. And then our second major shift was we implemented a 
program we refer to as Jumpstart.
    Jumpstart is an early childhood program for three- and 
four-year-old children and it is bringing together several 
programs the district already had in place plus expanding. 
Jumpstart is bringing together the Headstart program. We are 
the fortunate grantee for the community. Seventeen percent of 
the Headstart programs in the country are run by school 
districts. We run the IDEA, three- and four-year-old program. 
We have a private tuition program we run. We have a State-
funded part of the education reform, Representative Northup 
mentioned, program. In addition, we have a corporate three-
year-old program.
    We provided these programs as a seamless program and 
without the testimony of all the effort it took to get there, 
let me say with business support, Federal Government support, 
and local funds, we are now serving 5,200 three- and four-year-
old children in Jefferson County. We are serving all 4-year-
olds eligible for free lunch, and we are serving 35 percent of 
the 3-year-old children that are eligible for free lunch.
    Early in our endeavors, we received a grant from the U.S. 
Department of Education to do a longitudinal study of our 
efforts, and as introductory, I would like to say we're making 
some real, we believe, progress.
    First, let me talk about school attendance. It's important 
to have children in school. We compared a group of students who 
participated in our program, the Jumpstart program, to a 
similarly situated group of students who had not had the 
opportunity to participate in the Jumpstart program as part of 
our longitudinal research. At the fourth grade level, students 
who were in the program attended schools were enrolled in 
schools six days more per year and attended school eight days 
more for the days enrolled, showing a net increase of 5.3 
increase in attendance. On the academic side, which is 
extremely important to us, we compared our control group of 
students to the Jumpstart children on the CTBS test, a 
standardized test and the Jumpstart children consistently 
scored 10.5 percent higher level.
    In Kentucky, as part of education reform, we have a fourth 
grade assessment instrument, referred to as KIRIS. We're in the 
process of changing that to a different instrument. But with 
the control group and the Jumpstart group, comparing on 
reading, science, mathematics, and social studies, on average 
children score 11 percent higher.
    We followed our preschool students and conducted home 
visits to determine parent satisfaction with the program, and 
we have 93 percent parent satisfaction. Statistics say the 
success is there.
    We are very proud that we are partnering with the 
University of Louisville in expanding their early childhood 
program. They are in the process of establishing an early 
childhood center that will be research-based. Obviously, you 
can see we're very interested in that. The fact that the 
University of Louisville will have a faculty from diverse 
disciplines working with our personnel is extremely exciting to 
us as we endeavor together to expand our childhood programs. We 
are fully supportive partners and as they expand their program, 
we look forward to placing our students and staff at their 
center so that we can work together to advance the program.
    Dr. Molfese.
                              ----------                              

                                           Tuesday, April 13, 1999.

                       SCHOOL REFORM INITIATIVES


                                WITNESS

VICTORIA MOLFESE, PROFESSOR OF PSYCHOLOGY, UNIVERSITY OF LOUISVILLE
    Ms. Molfese. Mr. Chairman, members of the committee, I am 
pleased to discuss with you today the Interdisciplinary Center 
on Research in Early Childhood. What is particularly exciting 
about this new center is the interest of the State and Federal 
legislators, particularly the interest of Congresswoman Northup 
in the development of the center and its initial aims. The 
Center is seeking to take an interdisciplinary approach to 
early childhood issues because the issues are interdisciplinary 
in nature. They involve social work, psychology, psychiatry, 
education, music, all of the issues that impact on children's 
lives between the ages of birth and five years.
    The primary goals of the center are to do two things, both 
basic research as well as applied research. There is a long 
history and significant literature on the impacts on children's 
development in the early years of issues such as perinatal 
risks, birth complications, pregnancy complications, as well as 
early childhood health. We're looking at how those impact 
together with early cognitive development, language 
development, memory abilities on academic readiness. We want to 
look at the issues that children bring with them to school that 
make them academically ready to read, to learn in school.
    The projects that will be funded through the center will be 
longitudinal in nature, building on research that we already 
know and particularly developing approaches to intervention. 
There's a great deal of basic research that exists much less on 
intervention that can be applied that is low-cost, highly 
effective, can be delivered by individuals without an extra 
amount of training, such as might be found in a clinical 
individual.
    We want it to be applied in the classroom and that's one of 
the reasons that we're especially pleased with the Jefferson 
County Public Schools' interest in partnering with us. These 
will be interventions that have been shown to be effective, and 
we hope to develop increasing effectiveness.
    We're also interested in development of parenting skills, 
getting parents involved in the development of their children 
and giving them the skills that they need to have in order to 
be effective parents and in order to be partners with the 
school district.
    Part of the research that we're doing also involves 
research on children's brain development. A good deal of 
information is available on how the brain interacts with 
opportunities in the environment to set children up to take 
advantages of opportunities. We can identify through some of 
the techniques at birth, children who are going to have 
difficulties in school. And we hope to build on those early 
identifications by delivering appropriate interventions to 
enable children to benefit from early opportunities, such as 
those that are offered in the preschool classrooms at Jefferson 
County Public Schools.
    The Center is going to be seeking funding from the 
Department of Education for its educational based funding, as 
well as from the National Institutes of Health for its health 
sciences approaches. We hope to generate studies that will be 
longitudinal in nature, covering two to three years rather than 
single shots studies that may account for only a few months of 
children's time because we believe that these are wise 
investments of funds.
    So we're very pleased that the University of Louisville has 
an opportunity to establish this Center and do important basic 
research. We look to partnering that already exists with the 
Jefferson County Public Schools to further our efforts to 
improve the academic readiness of children.
    Thank you.
    Mr. Porter. Thank you both. Are you aware of a similar 
partnering of a school district and a university anywhere else 
along the same lines?
    Ms. Molfese. Yes, I think that there is something that has 
been established in North Carolina with the University of North 
Carolina Chapel Hill and the related universities and the 
public schools. And we hope to build on what they've already 
developed.
    Mr. Porter. So you're going to share your information with 
one another and see where successes have been achieved and 
where they haven't been achieved.
    Well, I'm certain that you know you have a very articulate 
and strong advocate here in Representative Northup. And I have 
a feeling once again that we're going to see some special 
attention in our bill to this effort that both of you are 
engaged in.
    Thank you both for appearing here.
    [The prepared statements of Martin Bell and Victoria 
Molfese follow:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

                                           Tuesday, April 13, 1999.

 MUSEUM OF SCIENCE AND INDUSTRY AND NATIONAL HEALTH SCIENCES CONSORTIUM


                                WITNESS

DAVID R. MOSENA, PRESIDENT, MUSEUM OF SCIENCE AND INDUSTRY, CHICAGO, 
    ILLINOIS
    Mr. Porter. Next, we would like to welcome to the witness 
table, Dr. David R. Mosena, this one is mine--the president of 
the Museum of Science and Industry in Chicago. One of not only 
our city's great treasures, but one of the great treasures of 
the United States. And if you haven't been to the Museum of 
Science and Industry, let me recommend it to all of you. It is 
really a wonderful learning opportunity that Chicagoans and 
visitors to our city get. And, David, we're delighted to see 
you here.
    Mr. Mosena. Thank you very much, Mr. Chairman. Thank you 
for the opportunity to testify before the committee 
specifically today about the Museum's plans to enhance our 
educational outreach programs.
    As you may know, we first opened our doors in 1933 and our 
now the oldest and largest science museum of our kind in the 
Western World. Over two million people visit the Museum 
annually, that includes approximately 400,000 school children 
on fast visits with their teachers.
    Since founding, our primary mission has been to inspire 
interest in science learning and science literacy. As we 
continue to strive to meet this goal, the challenge we face 
today is meeting the educational outreach that is needed as 
technology changes so rapidly around us. We know the Museum, 
its exhibits, its facilities, its staff provide hundreds of 
thousands of school children and their teachers who visit us 
each year with an unparalleled resource. And since none of my 
colleagues are here to defend themselves, I'll just say that we 
have by far the highest number of school children coming to 
this museum of any museum in the City of Chicago. And it is a 
terrific learning resource for kids.
    However, technology continues to advance at a rapid pace 
and as a result, its effects are being felt by all of us. The 
Museum must enhance its ability to serve the technological 
needs of both teachers and students, particularly teachers who 
don't have the adequate support. There are a lot of schools 
that have been wired. They have a lot of computers that have 
been handed out, but they're not getting the support they need 
to be competent in the technology.
    In order to meet this challenge, we intend to provide 
teachers with ongoing professional development opportunities 
and the technical support necessary to build curriculum around 
science and technology. We're developing a four year master 
teacher program that will allow us to meet this goal. The 
program will provide teachers continuing education so that 
today's most advanced science concepts and technology tools can 
be used in the classroom itself. The master teacher program is 
being designed to encompass workshops, classes, seminars for 
teachers from K through 12 throughout Illinois. And we intended 
to design these programs with both on-sight and distance 
learning so that not only Chicago regional schools, who can 
visit us, but also schools throughout the State, every school 
district in the State, as well as nationally, and 
internationally for that matter, can participate in the 
programs.
    For those that graduate from the program, we will further 
their own professional development and incorporate technology 
into their curriculum to the benefit of school children 
throughout Illinois.
    We're planning to build a Technology Learning Center that 
will house this program at the museum and allow us to 
coordinate our education programs with the Chicago public 
school system, our suburban and down-State districts, as well 
as universities and research labs in the Chicago area.
    The Center will also be available as informal drop-in site 
for visitors who come to the Museum on a voluntary basis, on a 
regular basis. The school kids come on a voluntary basis too.
    The Technology Learning Center will provide Museum visitors 
access to the 21st Century technology and begin to reduce the 
technology divide that is growing up in our inner-city, to help 
equalize educational and career opportunities for all 
Americans.
    Prior to closing, Mr. Chairman, I would like to just switch 
hats for one second and speak to another issue and that is, as 
you may know, the Museum is a member of a group called the 
National Health Sciences Consortium, which is a group of nine 
museums around the country from coast to coast that are working 
on health issues in science. The Consortium's goal is to infuse 
health sciences into our Nation's science museums and it's for 
this mission that we also seek the subcommittee's help.
    Under your leadership, Mr. Chairman, this subcommittee has 
supported the design of two very successful consortium 
exhibits. One was opened several years ago at the Museum of 
Science and Industry on AIDS, which I think you've been to 
visit. And last month, the traveling exhibit named The Changing 
Face of Women's Health opened at the Maryland Science Center. 
These exhibits play a crucial role in educating Americans about 
health sciences, a field which is also changing at a 
breathtaking pace.
    The NIH's Science Education Partnership Award Program, 
called SEPA, was created to encourage scientists to work with 
educators and community organizations to improve the public's 
understanding of science and increase the interest in young 
people in science careers. However, it is only funded to the 
tune of $1 million a year, which is, of course, a very tiny 
amount of money. As the SEPA program and the Consortium share 
the same common goals and interests, we ask the subcommittee to 
consider collaborating with the Nation's science museums to 
disseminate to the public their knowledge that is being 
generated in the field of medical research and biotechnology.
    Mr. Chairman, the Museum thanks you very much for the 
opportunity to present to you today and for your continued 
support of this great national treasure, as you call it.
    Mr. Porter. Dr. Mosena, you mentioned that NIH has a 
program which should be encouraged to support the efforts of 
science museums to share with the public advances being made in 
the health sciences. It's my understanding that the National 
Science Foundation has an informal science education program 
that supports programs in which learning is voluntary and self-
directed. Are science museums currently working with NSF to 
disseminate the knowledge that is being generated in the field 
of bio-medical research, as well as with NIH?
    Mr. Mosena. Mr. Chairman, they are. That is probably the 
most popular Federal program for science museums in the 
country. It has been in existence for several years, the 
informal science learning program. We currently have an exhibit 
that is under development in an educational outreach program on 
genetics that NSF helped fund. But the primary focus at NSF is 
on the physical sciences and it's about a $40 million program. 
And what all of us in the science museum community would like 
to see is that the National Institutes of Health have a 
comparable or even larger, given the relative scales of their 
budgets, program that would provide similar outreach. It's only 
so far the NSF can go. They're over 200 science centers and 
science museums in the country, essentially lined up at NSF's 
door on the technology side, the physical sciences side. And 
we're supporting the concept of a sequel at NIH.
    Mr. Porter. This is not directly relevant, but we, of 
course, have only biomedical research under our jurisdiction in 
the subcommittee, but we have been working very hard to 
encourage that all basic science funded by the Federal 
Government receive large increases as a national priority. And 
we believe that we must bring all research along at the same 
rate and not simply emphasize biomedical research while 
ignoring research done through NSF or NASA or the Department of 
Energy or Defense or any others. And we appreciate the 
leadership that you're providing and the education you're 
giving the children of our city, and the people who visit the 
Museum from all around the world. And we thank you for coming 
here to testify today, Dr. Mosena.
    Mr. Mosena. Thank you very much, Mr. Chairman.
    [The prepared statement of David Mosena follows:]

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                                           Tuesday, April 13, 1999.

FUNDING FOR RESEARCH CONDUCTED BY THE NATIONAL INSTITUTE FOR ARTHRITIS, 
              MUSCULOSKELETAL DISEASES, AND SKIN DISEASES


                                WITNESS

TINLEY E. ALBRIGHT, AMERICAN ACADEMY OF ORTHOPEDIC SURGEONS
    Mr. Porter. Next, we are pleased to welcome Dr. Tinley E. 
Albright, M.D., representing the American Academy of Orthopedic 
Surgeons. And, Dr. Albright, the people in the audience ought 
to know that you have won the gold medal in figure skating in 
1956 when you thrilled the Nation and the world with your 
performance in the Olympics. I was a junior at Northwestern 
University then and was excited, as we all were, with your 
winning that gold medal. And you went on then to become a 
physician. And we are pleased to welcome you this morning. 
You're going to testify on behalf of the American Academy of 
Orthopedic Surgeons.
    Thank you for being with us.
    Dr. Albright. Thank you, Mr. Chairman. I'm pleased to be 
here, Mr. Chairman and committee members. And I am here today 
to support the sustained and increased research funds for the 
research conducted at the National Institute for Arthritis, 
Musculoskeletal Diseases, and Skin Diseases. And I speak from 
the perspective of my own involvement with scientific and 
academic institutions, and my personal experience as a surgeon, 
and also my personal experience as having had bilateral total 
hip replacement on November 9th this year.
    So I do have scars on each hip, and I was frisked when I 
came in the security door today. But I am pain free and have 
regained a freedom of movement that I thought was really gone 
forever. I never thought I would be a patient. I thought, oh, 
this is just an old groin pull, a recurrent chronic tendinitis. 
And that was really years and years that I was in intense 
denial. And as it worsened so that I had trouble walking and 
then sitting in meetings, and at night, I couldn't find any 
comfortable position and would alternate between scalding with 
hot water bottles and freezing from ice packs just to try to 
get away from the pain. And I tried everything. I tried Advil, 
Yoga, body-work, anything I could think of because the idea of 
facing not being able to move was pretty painful.
    And when I finally did have the X-ray, I didn't even 
recognize my own joints. When I heard ``severe advanced end-
state bilateral osteoarthritis, no cartilage left,'' I was 
devastated, just rough, jagged surfaces were left. It was hard 
to face. And in a state of disbelief, the first thing I did was 
a med-line search and then talked to doctors and 
physiotherapists, researchers, rheumatologist, trying to find a 
way around it. And it was pretty discouraging. They told me I 
couldn't ever sit on a soft sofa. I couldn't cross my legs, 
couldn't bend over, and would be quite limited. That was hard 
because even now I jump and fly in my dreams and like to be 
able to move freely, and I loved training for the Olympic 
competition.
    Dr. Ben Berbaum, who is head of the Bone and Joint 
Institute of the New England Baptist Hospital, who did the 
surgery, went over every one of my concerns in great detail, 
and he reviewed with me what research had now been able to 
offer and the things that are still remaining that really need 
to be done and could be really a cost-saving to the economy if 
done. The things that I benefited from were things like the new 
ceramic coated components and then the new Gamma irradiation of 
the plastic polyethylene components. And these are both 
supposed to enable the replacement at least double its life. 
And also the irthropotent shots that can stimulate the bone 
marrow so that you can give four units of your own blood within 
four weeks of the surgery. And things like the cement-less 
procedure so that I could have two hips done at the same time. 
And then the new careful inter-operative monitoring, which 
makes the operation safer and then the cell-saver which means 
you don't have to have quite so many transfusions. And also the 
operation took four hours and that's the time it used to take 
to do one hip. And now two can be done.
    Well, the morning after surgery when with help I was 
allowed to sit on the edge of the bed and then stand up, I was 
pain-free. I immediately could feel that my legs were even-
length. And that pain was gone and was quite a different thing. 
I could actually stand up straight.
    When I think now had those research advances not occurred, 
what my life would be like now, it's just hard for me to even 
face thinking about it. And I was an elite athlete and had a 
health lifestyle and health diet and was aware of the mind-body 
connection, but here I am today, and we don't know if we find 
the tendency toward osteo-arthritis or detect early osteo-
arthritis, there's nothing to do to slow it down or to prevent 
it.
    As a child, I had polio. And at the time I had it, the 
cause wasn't known, there was no treatment, and now through 
research, it is just about eradicated.
    My wishes for the orthopedic field would be that research 
would enable knowing how to prevent osteo-arthritis, how to 
ensure that the joint replacements last as long as needed when 
they do have to be done, and that the big guns would be put on 
gene therapy to improve the field.
    And that I'm back skating on the frog pond in Boston Common 
now is really a modern-day miracle. But that miracle is really 
because of Federal investment in research.
    I thank you very much for having Dr. Freidlander and me 
here. And we would be happy to answer any questions.
    Mr. Porter. Dr. Albright, when was this operation, in 
November?
    Dr. Albright. Yes, November.
    Mr. Porter. And you're back skating already?
    Dr. Albright. Yes. I didn't try any triple axles.
    Mr. Porter. Isn't this the same operation that Jack 
Nicklaus just had on one hip, I think?
    Dr. Albright. Yes, same operation, same surgeon actually. 
But I wasn't going to tell anybody.
    Mr. Porter. Well, he's not back on the golf course yet 
though. But you're back skating.
    Well, we very much appreciate your testimony. Would you say 
that this is a result of your sports career that this need to 
replace the hips developed from or is this something different?
    Dr. Albright. Well, I tried to think because, of course, I 
had lots of bruises all the time, black and blue spots from 
working on things, and Dr. Freidlander can address this, I'm 
told that it probably wasn't. It was probably a congenital 
thing.
    Would you?
    Dr. Freidlander. Dr. Albright is one of about 20 million 
Americans that has significant degenerative arthritis at any 
one time. So I suspect that very few of those were as athletic 
and as accomplished as she.
    Dr. Albright. We hoped it would help me avoid it.
    Mr. Porter. Let me thank both of you for appearing today. 
We thank you very much for your testimony and it's fascinating 
what progress is being made through research in providing 
relief that couldn't be provided previously.
    Thank you both very much.
    Dr. Albright. Thank you.
    [The prepared statement of Tinley Albright follows:]

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                                           Tuesday, April 13, 1999.

                NATIONAL HUMAN GENOME RESEARCH INSTITUTE


                               WITNESSES

MICHAEL D. MILLER, DIRECTOR, FEDERAL GOVERNMENT RELATIONS, PFIZER
VICKY WHITTEMORE, PH.D., VICE PRESIDENT FOR MEDICAL AND SCIENTIFIC 
    AFFAIRS, NATIONAL TUBEROUS SCLEROSIS ASSOCIATION
    Mr. Porter. Next, we're pleased to welcome Dr. Michael D. 
Miller, the director of Federal Government Relations, with Dr. 
Vicky Whittemore, Ph.D., vice president for Medical and 
Scientific Affairs, testifying in behalf of the Genome Action 
Coalition.
    Thank you very much to both of you for appearing today?
    Mr. Miller. Good morning, Mr. Chairman. I'm Dr. Michael 
Miller, director of Federal Relations for Pfizer, and I'm 
joined at the table, as you said, by Dr. Vicky Whittemore, vice 
president for Medical and Scientific Affairs at the National 
Tuberous Sclerosis Association.
    We're here representing the Genome Action Coalition which 
was created in 1995 and represents about 135 organizations 
ranging from pharmaceutical and biotech companies, like Pfizer, 
to patient advocacy groups, like the National Tuberous 
Sclerosis Association, to genetic professional groups, to 
academic research centers, and others.
    The Coalition's mission is to encourage an environment in 
which genomic research can continue to flourish.
    Ms. Whittemore. Our purpose in appearing before you today 
is to encourage the subcommittee to continue its strong support 
of the National Human Genome Research Institute at the National 
Institutes of Health. As the NHGRI, working with the Department 
of Energy and private industry, moves toward the completion of 
the core mission of the project, which is sequencing all three 
billion base pairs that are contained in the human genome, we 
are presented with an unprecedented opportunity. It's an 
opportunity to move the practice of health care into the new 
era of molecular medicine that will result in advances we can 
barely imagine today.
    As an example, Tuberous Sclerosis is caused by a mutation 
in one of two genes. The first, which was identified in 1993 
and the second in 1997. And these genes would not have been 
identified so quickly, the search took about 12 years, but they 
absolutely would not have been identified without the 
partnership between NHGRI-funded researchers, NIH-funded 
researchers, and individuals funded by our Institution.
    For Tuberous Sclerosis now, intense research is underway to 
identify the function of the two genes so that there can be new 
treatments provided to individuals like my nephew, who suffers 
from Tuberous Sclerosis. He has had seizures everyday of his 
14-year-old life, since he was three months old. He is severely 
mentally retarded, autistic, is not toilet-trained, is totally 
non-verbal, communicates with a few sounds. So research that is 
going on through NHGRI and the NIH and foundations like our own 
are truly providing hope for individuals like my nephew.
    We want to be clear today that it's of the highest priority 
for the Genome Action Coalition, the National Tuberous 
Sclerosis Association, as well as the Alliance of Genetic 
Support Groups, who I also represent, that NHGRI continue to be 
funded at a very high level to continue its mission.
    Mr. Miller. Mr. Chairman, there are two issues I would like 
to mention very briefly today. First, is the importance of the 
rapid completion of all phases of the International Human 
Genome Project and the central role NHGRI is assuring in the 
Project's success. As Dr. Whittemore has said, sequencing the 
human genome will provide biomedical researchers a great leap 
forward in better understanding illnesses and developing 
strategies for finding new treatments and cures. There are no 
substitutes for this knowledge and there are no substitutes for 
NHGRI's role in this project. The Human Genome Research Project 
is decoding the entire genome, it's re-checking its data five 
times, its accuracy rate is one in one million and the results 
are available to researchers within 24 hours. This all adds up 
to completeness, accuracy, and availability.
    Many other initiatives, both public and private, are 
paralleling NHGRI's work, but they're focusing on specific 
areas on the genome where there may be more immediate and hence 
commercial benefits. However, they are not replacing the 
central role of NHGRI in developing an entire map that is 
crucial to understanding not only the entire genetic code, but 
also an understanding of how it is expressed and how diseases 
are caused. In other words, these efforts are duplicative, they 
are complementary.
    The second issue I want to mention is the NIH's overall 
effort to promote more efficient clinical research and drug 
development by fostering thinking about markers of disease 
progression. The NIH has been engaged in useful dialogue with 
industry and others and this collaborative thinking is 
beginning to focus researchers on how early markers of disease 
progression can be measured, validated, and used. In the 
future, these markers will improve individual treatment for 
chronic diseases and speed the development of new therapies. 
NHGRI's work will feed into this overall NIH effort by helping 
researchers understand genetic components of diseases and thus 
identify potential markers of disease progression sooner.
    Ms. Whittemore. Mr. Chairman, Dr. Miller and I are here 
today, sitting here together, testifying before you in the 
subcommittee, on the importance of funding for the Human Genome 
Project, even though we may not agree on all health care 
issues.
    This subcommittee is asked to do nothing less than assure 
the future of biomedical research into the next century. You 
have an awesome responsibility, one that you have exercised in 
the past with great foresight, and we thank you for that. As 
you work toward your goal of doubling the NIH budget in five 
years, a goal the Genome Action Coalition supports, we would 
ask that the funding for the National Human Genome Research 
Institute be increased by an amount that certainly is no 
smaller than that of the NIH as a whole.
    The Genome Action Coalition and its diverse membership look 
forward to working with the subcommittee to achieve that level 
of success again.
    On behalf of Dr. Miller and myself, we thank you for the 
opportunity to testify before you today and we are happy to 
answer any questions you might have.
    Mr. Porter. Let me apologize to both of you, I did not have 
the information. Dr. Miller is the director of Federal 
Government Relations for Pfizer, Incorporated. And Dr. 
Whittemore is the vice president for Medical and Scientific 
Affairs of the National Tuberous Sclerosis Association. And I 
should have mentioned that when you began your testimony.
    As you both know, we have placed the work of Dr. Francis 
Collins and his colleagues at the National Human Genome 
Research Institute to a very high priority. Dr. Watson and a 
number of other noble laureates always are there to encourage 
us to do so.
    And we appreciate your encouragement today. We think this 
is actually something that Dr. Collins always points to as 
being ahead of schedule and under budget. And now it's going to 
be way ahead of schedule and apparently way under budget. And 
that's always good news for any appropriators, and we put it, 
of course, at a very high priority and want to do everything we 
can to provide Dr. Collins the resources he needs to complete 
the entire mapping of the human genome and on from there, of 
course. That's just the beginning of the knowledge that will be 
gained.
    So thank you both for coming to testify.
    Ms. Whittemore. Thank you.
    Mr. Miller. Thank you.
    [The prepared statement of Michael Miller and Dr. Vicky 
Whittemore follows:]

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                                           Tuesday, April 13, 1999.

                          EYE DISEASE RESEARCH


                                WITNESS

CARMEN PULIAFITO, PRESIDENT-ELECT, ASSOCIATION FOR RESEARCH IN VISION 
    AND OPHTHALMOLOGY
    Mr. Porter. Next is Dr. Carmen Puliafito, M.D., president-
elect of the Association for Research in Vision and 
Ophthalmology testifying in behalf of the National Alliance for 
Eye and Vision Research.
    Dr. Puliafito.
    Dr. Puliafito. Thank you very much, Mr. Chairman. I come 
here today as chairman of the Department of Ophthalmology at 
the Tuft's University School of Medicine, an institution which 
I'm happy to say you're an honorary alumnus of. I'm also 
chairman of the National Association for Eye and Vision 
Research and president-elect of ARVO, which is the world's 
largest organization of individuals and clinicians 
investigating cures for new eye problems.
    I would like to bring to the committee's attention today 
several things. First, that the United States of America is 
facing a new epidemic of blindness. With the rapid increase of 
the population, diseases such as macular degeneration are 
becoming more common everyday. As a practicing retina 
specialist in Boston, I am confronted by patients who have 
problems involving the macula, which is the central portion of 
the retina, the portion of the retina that accounts for 
reading, driving vision, and facial recognition. More than two 
million Americans have macular degeneration and this number is 
rising rapidly.
    We don't have a cure for the disease. The treatments that 
are available have been directly developed as a result of 
Federal research funds. I would like to emphasize the 
devastating effects to the quality of life of patients that 
have macular degeneration. Their ability to function 
independently, the increase in isolation, increase in 
difficulty in participating in recreational events, in doing 
the things that make the quality of life worth living is very, 
very profound.
    It's a silent epidemic because many of these individuals 
are senior citizens who are not articulate, cannot get out and 
really lobby about this disease.
    Mr. Chairman, we in the eye research community are very 
concerned about the growing disparity between the growth in 
funding for overall research in the United States and research 
for eye diseases. Since 1985, the NIH has grown by 60 percent 
but the NEI only by 45 percent. And last year, the Eye 
Institute was the second lowest Institute in terms of increase 
in spending. We think that this does not reflect the pressing 
priority of eye disease with the rapid aging of the American 
population. The social, the economic cost of blinding diseases, 
such as glaucoma, macular degeneration, and diabetic 
retinopathy can only be reduced, can only be reduced by 
enhanced Federal funding. And so we would appreciate the 
committee's consideration going forward this year.
    Mr. Porter. Thank you, Dr. Puliafito. The President didn't 
give us much guidance in his budget about the priorities at 
NIH. Each Institute was given with the cap, about a 1.4 percent 
increase in the President's budget with no indications to where 
the priorities might be.
    I would tell you that we value the work of the National Eye 
Institute and NIH in respect to eye diseases. I often say that 
members of this subcommittee do not consider matters in a 
vacuum. My wife's mother, for example, has retinitis pigmentosa 
and has very, very, very limited vision. So each of us I think 
brings to the table some understanding of the impact of these 
diseases on the lives of Americans. And we hope in the end that 
we will be able to do very well in terms of funding for NIH and 
even in this very difficult budgetary context, end up at least 
intact on our goal to doubling funding for biomedical research 
generally in a five year time frame.
    All I can say to you is that we will do our best.
    Dr. Puliafito. Thank you very much.
    Mr. Porter. And you are correct, I'm very proud to be an 
honorary alumni of Tuft's University and thank you very much 
for appearing here today.
    Dr. Puliafito. Thank you.
    [The prepared statement of Dr. Carmen Puliafito follows:]

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                                           Tuesday, April 13, 1999.

                            FAMILY MEDICINE


                                WITNESS

LANNY COPELAND, M.D., PRESIDENT, AMERICAN ACADEMY OF FAMILY PHYSICIANS
    Mr. Porter. All those bells, for those not familiar, simply 
mean that the House has now gone into session. We do not expect 
any votes before 12:30, so I think we're going to be all right.
    Next, we're pleased to welcome Dr. Lanny Copeland, M.D., 
the president of the American Academy of Family Physicians.
    Dr. Copeland, it's good to see you.
    Dr. Copeland. I am Lanny Copeland. I am president of the 
88,000 member American Academy of Family Physicians. My 
background is that I've practiced family medicine in a small 
town in southern Georgia for 18 years in Moltrey, where I 
delivered about 1,000 babies and took care of many families of 
five generations.
    Before I begin, I want to thank all of you for your strong 
support for the health professions funding throughout the 
years. Without your advocacy, funding levels would be much 
lower than they are right now and the actual existence of 
family medicine training programs would be threatened.
    I'm pleased to discuss three issues that are important to 
family physicians: family medicine training in Section 747 of 
the Public Health Service Act; secondly, the Agency for Health 
Care Policy and Research; and, three, rural health programs.
    The first subject is funding for family medicine training. 
The Academy supports appropriations of $133 million for Section 
747 of the Public Health Service Act. This Section authorizes 
the primary care and dentistry cluster, which includes family 
medicine programs. The $133 million figure includes $87 million 
for family medicine, which is our assessment of the need for 
these programs. This is the only Federal program that provides 
support to family medicine programs at the undergraduate and 
graduate level.
    As subcommittee members well know, the President's budget 
recommended zero funding for Section 747. Of course, we're 
firmly opposed to this proposal. The health professions 
programs were newly reauthorized last year and the bill was 
passed unanimously by the Senate and under suspension in the 
House demonstrating its bipartisan support.
    Let me make a few points about the need for family medicine 
training programs. There is still a shortage of family 
physicians and other primary care physicians in the U.S. 
Experts have called for increasing the number of primary care 
physicians for quality, access, and cost reasons. They support 
a workforce with a 50/50 ratio between generalists and sub-
specialists and right now it's only 30/70.
    Family medicine grants have helped establish an 
infrastructure throughout the country, departments, 
residencies, and clerkships, that has turned around the 
downward trend in primary care. While medical students are 
going into primary care in greater numbers, the percentage is 
still one-third of all graduating medical students.
    Family physicians have deep roots in rural communities 
where 25 percent of all Americans live and they provide health 
care to these citizens. About one-quarter of family physicians 
locate in rural areas as well.
    The market is demanding more family physicians than our 
Nation can train. Long-time Medicare payment policies have also 
skewed the market and helped increased the number of sub-
specialists. NIH grants totaling billions of dollars go mainly 
toward sub-specialist research in the Nation's medical 
education complexes.
    Studies show that primary care physicians are more cost-
effective due to their prudent use of hospital services, tests, 
and procedures. A 1995 study found that Medicare spending could 
be cut by almost $150 billion and as much as $272 billion over 
six years if primary care physicians made up half of the 
physician workforce. Unlike other specialties, 80 percent of 
family medicine residency training takes place in community 
settings rather than major teaching hospitals. As a result, 
family medicine programs cannot access the considerable 
resources going into these teaching hospitals.
    Let me give you some outcomes data showing family medicine 
training programs really work. Over 90 percent of physicians 
who complete family medicine residencies work in direct patient 
care. A 1994 GAO report found that students who attended 
medical schools with family medicine departments were almost 60 
percent more likely to pursue all three primary care 
disciplines. A 1997 article in the Archives of Family Medicine 
found a strong relationship between continued Title 7 funding 
in the presence of family medicine departments. In 1998, the 
Tenth Report of the Council on Graduate Medical Education found 
that Title 7 family medicine programs have a successful record 
of training physicians who choose to practice in rural and 
under-served areas.
    I would like to talk as well about the Agency for Health 
Care Policy and Research. The Academy recommends appropriations 
of $225 million to AHCPR. We support the Agency because of its 
emphasis on primary care and practice oriented research.
    Let me tell you what primary care research is and why it's 
important. It includes research on conditions that affect a 
majority of the population and translating biomedical research 
into practice. The Academy is not alone in its belief that 
primary care research is important. The 1996 Institute of 
Medicine Report on Primary Care found that Federal investments 
in primary care research totaled between $15 and $20 million 
annually and recommended an immediate fourfold increase.
    Finally, I would ask you to remember that family physicians 
do care for America.
    I would be pleased to answer any questions at this time.
    Mr. Porter. Dr. Copeland, thank you for your testimony. I'm 
sure you are aware that both Representative Bonilla and myself 
and others on the subcommittee are very strong supporters of 
the line for the health professions in our bill.
    Why do you suspect that the White House keeps zeroing you 
out?
    Dr. Copeland. I'm not certain. We hear on one side that 
more primary care physicians are needed, more family physicians 
are needed and yet we have no funding for this. And the market 
supply is in heavy demand. And I'm sure in your area in 
Illinois and Mr. Bonilla in South Texas is much like where I am 
now in South Georgia, teaching the next generation of family 
physicians, it's like a vacuum. We train them and there is all 
sorts of the communities and areas where they can go to where 
they're desperately needed.
    Mr. Porter. I'm sure we'll again do our very best to 
provide funding for the health professions. Certainly, AHCPR is 
tremendously important to evaluating the changes that have 
occurred in health care delivery in our country. And if we 
don't do research in that area, we won't know what is needed to 
be done and what works and what doesn't work. So you're in a 
sense preaching to the choir. All we need is a little money to 
get this all done.
    Dr. Copeland. We always appreciate your support.
    Mr. Porter. We'll do our best with what we have. Thank you 
very much, Dr. Copeland.
    Dr. Copeland. Thank you.
    [The prepared statement of Dr. Lanny Copeland follows:]

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                                           Tuesday, April 13, 1999.

                  INFLAMMATORY BOWEL DISEASE RESEARCH


                                WITNESS

SCOTT ALLSWANG, CHAIRMAN OF THE BOARD OF TRUSTEES OF THE CROHN'S AND 
    COLITIS FOUNDATION OF AMERICA
    Mr. Porter. Next, we're pleased to welcome Scott Allswang, 
the chairman of the board of trustees of the Crohn's and 
Colitis Foundation of America.
    Mr. Allswang, nice to see you.
    Mr. Allswang. Thank you. Mr. Chairman, thank you for the 
opportunity to speak on behalf of the estimated one million 
patients who suffer from Crohn's disease and ulcerative colitis 
regarding Fiscal Year 2000 appropriations, both for the NIH and 
the CDC.
    My name is Scott Allswang and a constituent of yours from 
Buffalo Grove, it's a pleasure to be here this morning and to 
speak to your committee.
    I would like to depart from my prepared comments and speak 
to you first as a concerned citizen; secondly, as a volunteer 
leader, who has assumed a very high leadership position with a 
foundation serving a million patients and their families; and, 
third, as a parent whose love for his son has led me to this 
place and time before this body. It has been an interesting 
journey over the last 10 years. I have had the opportunity to 
speak before many volunteer and scientific groups, and I refer 
to Crohn's disease and ulcerative colitis, which collectively 
are known as inflammatory bowel disease, as silent or quiet 
diseases. Frankly, people don't like to discuss bowel problems. 
It's embarrassing.
    I became acquainted with the disease 10 years ago when my 
son Jason, who was then 13, was diagnosed with Crohn's disease. 
I knew little about the disease except that being in the 
insurance business, I had heard of it. I had known several 
patients. But I was not aware of the consequences for the 
patient and their family.
    The consequences of inflammatory bowel disease are anything 
but silent or quiet. First, there is a physical toll on the 
patient. I remember well when my son was first suffering 
symptoms: weight loss, vomiting, diarrhea, mood swings. We 
would be out enjoying ourselves and he would be doubled over in 
pain. It took a number of months before the proper diagnosis, 
but fortunately we came from a major city, a metropolitan area 
with terrific doctors. To this day in some rural areas, people 
still are not properly diagnosed with these diseases.
    Second, is the emotional toll on both the patient and the 
family, what I call the roller coaster effect of feeling fine 
one day and waking the next day with what is called a flare-up 
of the disease.
    And, third, there's the tremendous consequences for the 
country, both financial hardship for patients and the economic 
toll on this Nation. Digestive diseases as a group, I 
understand, account for the most lost productivity in the 
workforce in this country. And inflammatory bowel disease 
accounts for the largest percentage of the digestive disease 
lost dollar an hour. I know people in their early 30's who must 
use canes or who are confined to wheelchairs, who are on 
disability because of the consequences both of the disease and 
of the medications that they've taken over the years.
    Our patients though know full well that the work sponsored 
by the NIH and the CDC have certainly improved the quality of 
their lives. I've seen over the last 10 years tremendous 
improvements in medication and in treatment. And this past fall 
for the first time, the FDA approved the first medication 
approved solely for inflammatory bowel disease. It's a 
remarkable accomplishment.
    CCFA thanks this committee for your longstanding support of 
the NIH and for our Foundation. Last year's 14 percent increase 
for NIDDK continued the significant progress of recent years. 
Virtually all IBD researchers have come from initial support 
from the Crohn's and Colitis Foundation of America. We're very 
proud of the partnership between our Foundation and the NIH. It 
is a very strong relationship. But such support must continue. 
CCFA recommends a 15-percent increase for all appropriate 
agencies in Fiscal Year 2000. As has been stated previously, we 
also recommend a doubling of biomedical research over the next 
five years.
    Our patients have entrusted me to speak for them. I'm doing 
what I can. But all of you are empowered to translate this 
request into the needed dollars.
    Mr. Chairman, I've heard you on several occasions when 
we've been together at various events speak about biomedical 
research representing one of mankind's most noble endeavors. 
Please continue your fight for increased funding.
    I, again, want to thank you for the opportunity to speak 
before you, and I would be happy to answer any questions.
    Mr. Porter. Scott, I don't know if you're aware of this, I 
suspect you are, but I've been on this subcommittee for 18 
years and it was probably in the mid-1980's when George Cook, 
who was representing the National Grocer's Association, his 
daughter had Crohn's disease. And he came to us and described 
the great difficulties that she, like your son, was 
experiencing. And we got language into the bill to ask NIH to 
conduct research into this area. In fact, CCFA recognized my 
work in that regard even though I was a minority member of the 
subcommittee at the time. So this has been a priority for us 
for a long time.
    And I really appreciate your coming to testify. IBD is 
obviously something that affects millions of Americans and 
certainly the quality of their lives; and we want to do 
everything we can to provide the resources that are needed to 
make progress in this area.
    Mr. Allswang. Thank you very much.
    Mr. Porter. So thank you for being here.
    Mr. Allswang. Thank you.
    [The prepared statement of Scott Allswang follows:]

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                                           Tuesday, April 13, 1999.

                         SKIN DISEASE RESEARCH


                                WITNESS

A. PAUL KELLY, M.D., PRESIDENT, ASSOCIATION OF PROFESSORS OF 
    DERMATOLOGY
    Mr. Porter. Next, Dr. A. Paul Kelly, M.D., the president of 
the Association of Professors of Dermatology.
    Dr. Kelly, welcome.
    Dr. Paul Kelly. Thank you. Chairman Porter, ladies and 
gentlemen, good morning. I am A. Paul Kelly, professor and 
chief of the Division of Dermatology at King/Drew Medical 
Center in Los Angeles. I am also the president of the 
Professors of Association of Dermatology, which is made up of 
chair persons and program directors of all academic dermatology 
programs in the United States and Canada.
    On behalf of the Association and our patients and our 
patient advocacy groups, two of which you heard from this 
morning, the EBS, Ehlers-Danlos and Tuberous Sclerosis patient 
advocacy groups, that I am here to ask you, and hopefully 
convince you, to support the recommendations of the Ad Hoc 
Group for Medical Research Funding, which calls for a 15 
percent or $2.3 billion increase in the budget for the National 
Institutes of Health. And also to thank you for your support 
for the past Fiscal Year 1999, 15 percent increase.
    This is a rarity of action in that it would be good for all 
Americans, be that Democrat or Republican, be they rich or 
poor, black, white, brown, or yellow, male or female, young or 
old, or people of all religions.
    You have a copy of what I want to say and why I want to say 
it. I guess in the vernacular of Jerry McGuire, the movie, 
``more money, more money, more money'' and for the NIH, 
especially NIAMS, the National Institute of Arthritis and 
Musculoskeletal Skin Diseases. We claim we know we have the 
three largest organs of the body: the skin, the muscles, and 
the skeletal system. So we would, obviously, appreciate more 
funding and thank you for the past funding.
    Since a picture is worth a thousand words, I don't know if 
you have it in front of you, I submitted eight photographs of 
eight fairly common skin diseases, which have benefited from 
past NIH funding and would benefit from more NIH funding.
    Last, but not least, I ask you to support the suspension 
for the consideration of the revision of Circular A-110 until 
the matter has been thoroughly reviewed.
    I thank you for your attention and past funding, and 
hopefully your vote to increase NIH funding for the Fiscal Year 
2000.
    Mr. Porter. Dr. Kelly, thank you for your testimony. Since 
you have left a little time, this is probably the appropriate 
point for me to give my sermonette on where we are in the 
budget process. Appropriators, and everyone in the audience 
who's concerned with biomedical research ought to realize this, 
appropriators are very anxious to get an allocation because we 
can't do any markups or any of our work without getting an 
allocation under a budget resolution. And I would say I might 
be speaking for all appropriators when we say let us get on 
with our work and give us an allocation and not allow what 
happened last year to happen this year, where we had no budget 
resolution ever, and we all waited months in order to begin the 
process of marking up. And ended up with most of the 
appropriation bills in one omnibus package that was negotiated 
with the White House. And I think every Member of Congress felt 
that that was an absolute disaster, as well as a subversion of 
the proper workings of the legislative and executive branches 
in resolving appropriation matters.
    So if you see appropriators supporting a budget resolution 
with which they may not particularly agree, they're doing it so 
that they can get an allocation and get on with our work and do 
it on time because we feel that we're going to come out much 
better with a normal process where bills are sent to the 
President and dealt with individually.
    We are going to have a tough time with our allocation. 
There isn't any doubt of it. Last year's appropriations in the 
end were increased about $20 billion with a lot of devices such 
as declaring emergencies and forward funding. That, if we have 
an adherence to our budgetary caps, means that we would have to 
make $20 billion in cuts this year just to meet the budgetary 
caps guidelines. I believe in the end that is not going to 
happen. This economy is performing extremely well. There are 
revenues coming into the Federal Government that are 
unexpected. We are way ahead in terms of reaching a balanced 
budget than we expected to be at this point in time and there 
are strong commitments, such as a commitment to increase 
funding for biomedical research, double over a five year 
period. In the process, however, we're going to see a great 
deal of ups and downs. And we all simply have to stick with the 
process and work these differences out.
    But I think you're going to see with the budget conference 
coming up I believe Thursday of this week, I think we're going 
to see an early budget adopted in the proper way. The bills 
marked up very early, including this bill, much earlier than 
previously, and taken to the floor and hopefully taken to 
conference and sent to the President where I think we can work 
out our differences and provide the priorities that are largely 
bipartisan within our bill.
    But I'm sorry to subject you to that sermonette. But I do 
want people to know that we are going to have some 
difficulties. It is not going to be an easy year. The budgetary 
caps are in place under the budget resolution. It is going to 
make it very difficult, but we believe if we stay with it and 
work hard, eventually we'll work out these differences and get 
where we want to go. It's going to be tough to do so though.
    Thank you for coming to testify and thanks for listening to 
that long dissertation.
    Dr. Paul Kelly. Thank you for listening to me.
    [The prepared statement of Dr. Paul Kelly follows:]

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                                         Tuesday, April 13, 1999.  

                     PUBLIC HEALTH SERVICE PROGRAMS


                                WITNESS

SUSAN C. SCRIMSHAW, PH.D., DEAN, SCHOOL OF PUBLIC HEALTH, UNIVERSITY OF 
    ILLINOIS AT CHICAGO
    Mr. Porter. Next, I am pleased to welcome Dr. Susan C. 
Scrimshaw, Ph.D., the dean of the School of Public Health of 
the University of Illinois at Chicago.
    Dr. Scrimshaw, it's good to see you. You're here 
representing the Association Schools of Public Health. And 
you've been here on a number of occasions previously. It's 
always good to hear from you, and I want to thank you again for 
the opportunity to come out to the University and see all the 
wonderful things that you're doing.
    Ms. Scrimshaw. Thank you very much, Mr. Chairman. It's 
wonderful to be here and we greatly appreciate all the support. 
And we welcome you to the University any time.
    I appreciate the opportunity to again present our statement 
on the Association Schools of Public Health Fiscal Year 2000 
appropriations request. And with your permission, Mr. Chairman, 
I would like to summarize my written testimony and elaborate 
with a few examples.
    As you know, Congress established the CDC Prevention 
Research Centers program in 1985 to provide the expertise to 
Schools of Public Health the Federal, local, and State 
officials and to communities and to serve as sources of 
education and training for our next generation of public health 
professionals.
    Just to give you an example, in Illinois, Mr. Chairman, 
four years of Chicago public school-based prevention 
programming with inner-city African American youth, their 
parents, teachers, and communities reduced growth in violent 
behavior between grades 5 and 8 by 33 percent compared to a 
control group. The Youth Project developed at the UIC School of 
Public Health is now being adopted by schools and communities 
nationally. Our faculty also contributed to a guide from the 
National Institute on Aging, which is a 100 page self-directed 
manual published by NASA with Senator John Glen. I see you're 
aware of it as the spokesperson. We, the health community, 
distributed over 100,000 copies.
    ASPH requests that Congress increase funding for this 
important program from $13.5 million to $30 million. And, Mr. 
Chairman, we also respectfully request that $100 million be 
allocated toward the prevention research initiative, which is a 
program of competitive extramural research at CDC. This is less 
than the President's request but equals the sum requested by 
CDC in OMB discussions.
    The benefits of population-based prevention are astounding. 
Ten percent of all early deaths in this country can be 
prevented by medical treatment, but public health approaches 
have the potential to prevent up to 70 percent of these early 
deaths through measures that target the underlying risks. As 
you probably know, tobacco is the leading cause of death in 
this country right now, drug, alcohol use, injury, diet, 
violence, environmental behaviors. Not only do we prevent the 
deaths, but we save a lot of money in treatment with 
prevention.
    I can't thank you enough for your appropriation last year 
which initiated this program. And this money is being spent on 
urban health research centers, asthma, injury control, the 
environmental research centers, public health applications of 
genetics, viral STDs, and many other important programs. It has 
been wonderful already.
    We're very disappointed, however, that the administration 
has recommended zero founding for the Public Health and 
Preventive Medicine programs administered by HRSA. As you know, 
as many as 80 percent of State and local public health 
officials have no formal public health training. Prestigious 
studies have concluded that we will have a large surplus of 
physicians in the next century and not enough public health 
professionals. To build on previous testimony this morning, 
we're talking about physicians without the broad public health, 
family medicine, family practice kind of training that we could 
provide.
    Mr. Chairman, ASPH respectfully requests $20 million for 
public health training and education programs in HRSA. And of 
this amount, $10 million will be dedicated to funding public 
health training centers at schools of public health as 
established in last year's Health Professions Reauthorization 
Act.
    I've already mentioned the lack of training in the public 
health workforce. The recent focus on potential bio-terrorist 
attacks in the U.S. has led many to question the ability of the 
current public health workforce to deal with such an emergency. 
There has not been a case of smallpox, for example, since the 
early 1970's and few public health professionals are trained to 
recognize the symptoms of this deadly disease. I may be one of 
the few remaining scientists who has seen it. When I was 
working at a village in Bolivia in the '60's, there was a young 
child with smallpox.
    This lack of formal training in infectious disease extends 
to other biological agents, such as Anthrax, Tularemia, and 
plague, just to name a few.
    The ASPH proposes that Congress include an additional $10 
million to the CDC Public Health Practice Program Office to 
provide for professional workforce development in this area.
    Mr. Chairman, ASPH also respectfully requests $8 million 
for CDC's Center for Environmental Health to expand the 
programs to include additional five centers to focus on 
environmental problems with children. Again, at our own School 
of Public Health in Illinois, our environmental health group 
and our epidemiology group work together on an asthma 
prevention program in the Chicago and Cook County schools.
    We're delighted with the committee's support of CDC's 
environmental research centers, and we respectfully ask 
Congress to appropriate an additional $5 million to expand the 
research, training, and regional activities of the 15 NIOSH 
ERCs. In Illinois, our ERC, which is led by Dr. Daniel Horshak, 
who you know well, has worked on the methyl-parathion 
contamination problem, hospital health care worker safety, and 
inappropriate use of mercury in the Latino community, among 
many others; and stands ready to help local communities with 
issues ranging from ground water contamination to air quality 
assessments.
    Mr. Chairman, my written testimony is far more detailed and 
includes mention of our support for additional programs and 
requests from public health partners. This Nation has strong 
leadership in people like David Satcher, Harold Varmus of NIH, 
Jeff Copeland of CDC, Earl Fox of HRSA, and Jane Haney of FDA. 
We're fortunate in this.
    I would like to end my testimony by again thanking and 
commending you and the members of the subcommittee for 
supporting public health service programs in general and 
academic public health programs in particular. Our Nation's 
health is the better for your support.
    Mr. Porter. Dr. Scrimshaw, thank you very much for your 
testimony.
    Did you say that you were recommending for the prevention 
line item in CDC an amount less than the President's budget, is 
that what you said?
    Ms. Scrimshaw. No, we're recommending far more than the 
President's budget.
    Mr. Porter. I thought I didn't hear that correctly.
    Ms. Scrimshaw. Either I mis-spoke--no, for more. And CDC is 
requesting more than the President's budget.
    Mr. Porter. I have to say that both Ms. Pelosi and myself 
and others, again, on the subcommittee are very interested in 
the subject of environmental health research. And I went down 
to Atlanta to the CDC last year to look at the facilities down 
there. And any American that looks at what they are doing and 
the tremendous progress that they're making in very trying 
circumstances ought to be embarrassed. They are in quonset huts 
from World War II. With the research that is being done there, 
we have to find a way, and we may not be able to do it this 
year, but we have to find a way to upgrade those facilities and 
put them in modern buildings with modern equipment. It is just 
amazing how little commitment we've made in that area and what 
an important area it is I think for American health, and we 
simply need to do better.
    Thank you for coming here to testify. We're very proud of 
the work you're doing in public health and your work at the 
University. Thank you.
    Ms. Scrimshaw. Thank you very much, Mr. Chairman.
    Mr. Porter. We have remaining six witnesses. We're slightly 
behind--well, we're way behind our schedule. But I think we'll 
be able to finish some time after 12:15 or so. And we thank all 
of you for your patience.
    The subcommittee is going to stand briefly in recess.
    [Recess.]
    [The prepared statement of Susan Scrimshaw follows:]

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                                           Tuesday, April 13, 1999.

                      ASTHMA AND ALLERGY RESEARCH


                                WITNESS

SHARON HIPKINS, DIRECTOR OF POLICY, ASTHMA AND ALLERGY FOUNDATION OF 
    AMERICA
    Mr. Porter. This is Sharon Hipkins, the director of policy 
for the Asthma and Allergy Foundation of America.
    Ms. Hipkins, welcome.
    Ms. Hipkins. Thank you, Mr. Chairman. It is indeed an honor 
to address the subcommittee on behalf of the Asthma and Allergy 
Foundation of America, which has been a not-for-profit 
voluntary health agency for the last 45 years working to 
improve the quality of persons with asthma and allergy.
    The incidence of asthma is rising, particularly among our 
young people. Despite the great strides we've made in 
identifying effective prevention and treatment for asthma and 
allergy, three of the biggest challenges still face us: the 
lack of a nationally-coordinated, locally-based effort to track 
the incidence of asthma; the development of a system to provide 
health professionals with up-to-date existing asthma management 
protocols; and the coordination of an effective, culturally-
competent, medically accurate public health education campaign 
for consumers. The Asthma and Allergy Foundation believes the 
Center for Disease Control and Prevention can and should lead 
that national effort.
    The subcommittee may be familiar with the health and 
economic costs of asthma in the United States today. The number 
of persons with asthma since 1980 has doubled, from 6.7 million 
to 17.3 million in 1998. Of that, 17.3, 4.8 million are 
children. Asthma is the 10th leading cause of hospitalization 
and emergency room visits due to asthma continue to increase 
each year. Asthma is a growing problem. The prevalence is 
increasing as well as the number of deaths. Asthma 
disproportionately affects people of lower incomes living in 
urban areas.
    At a time when we know more than ever about how to 
diagnose, prevent, and treat asthma, our emergency rooms are 
treating asthma's life-threatening attacks at an alarming rate. 
The latest NIH research suggests a cost of $11.3 billion is 
attributable to asthma in 1998 with the expectation that it 
will reach $14.5 billion in the next year.
    AAFA's experience in understanding and preventing and 
treating asthma suggests that a combination of science-based 
research, appropriate medical treatment, validated educational 
materials, and locally based support and communications effort 
are what makes a difference in effective management of asthma. 
We are keenly aware of the need for a systematic national 
assessment of surveillance data.
    To combat the increasing incidence of asthma and the 
unnecessary toll it takes on human lives, there must be a 
greater Federal role in a national asthma program. The Asthma 
and Allergy Foundation proposes that the CDC expand on its role 
in this area. The National Center for Environmental Health 
within CDC runs a small but successful program in asthma, which 
includes surveillance data to target resources and evaluate 
prevention efforts and conducting research to increase an 
understanding of asthma and to identify new strategies to 
control it. These programs are only in their infant stages, 
however. The need for a stronger Federal role is clear.
    A recent survey of the State health departments indicate 
until there is better data on asthma, more resources devoted to 
the management, and greater emphasis on the need to address it, 
we can expect little change at the State level. And, yet, to 
date, the Department of Health and Human Services has spent 
less than $5 million on public health practice for asthma, 
which they describe as activities that facilitate the work of 
the medical community and others to prevent asthma cases, 
reduce the severity of symptoms, and improve the quality of 
medical care. This public health practice is a key part of the 
direct provision of health services.
    While AAFA acknowledges the important role of NIH and the 
EPA in asthma and the need for their continued funding in 
asthma, we recommend CDC play a larger role because we 
recognize a very effective delivery system the agency has in 
place for the development and dissemination of information in 
other areas of health care. We believe that if properly funded, 
that development and use of a similar delivery system would 
greatly aid those treating asthma patients, as well as the 
patients and families dealing with asthma.
    On behalf of the Asthma and Allergy Foundation of America, 
and millions of American who live with asthma as I do, I 
encourage you, the members of this subcommittee, to address 
these obstacles with a provision of $12 million for the 
expansion of the National Asthma program at CDC. We know enough 
to make a difference in the lives of people who live with 
asthma. Without a Federal role to coordinate and lead a 
national effort, this knowledge is not fully utilized and lives 
will continue to be lost to a disease that we know how to 
prevent and how to manage.
    Thank you for the opportunity to be here today. We 
appreciate your interest and look forward to working together.
    Mr. Porter. Ms. Hipkins, we're aware that this is one of 
the diseases within our society that is increasing in its 
incidence rather than decreasing and that affects many young 
children in America. My sister suffers from asthma. I'm aware 
of its effects on at least adults. And I'm also aware that the 
American Lung Association that we often think of as dealing 
with Tuberculosis or with the effects of tobacco use in our 
society has made asthma its focus for the past year. And, 
obviously, this is a very, very important subject that we want 
to do our best to address. I know CDC puts it at a very high 
priority, and we'll do our best to provide the resources to 
them to do what you ask.
    Ms. Hipkins. Thank you very much, Mr. Chairman.
    Mr. Porter. Thank you for being here.
    [The prepared statement of Sharon Hipkins follows:]

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                                           Tuesday, April 13, 1999.

                          UROLOGICAL RESEARCH


                                WITNESS

MICHAEL MANYAK, M.D., ON BEHALF OF THE AMERICAN UROLOGICAL ASSOCIATION
    Mr. Porter. Our next witness is Dr. Michael Manyak, M.D., 
representing the American Urological Association. It's nice to 
see you.
    Dr. Manyak. Thank you very much, sir. And, Mr. Chairman, 
members of the subcommittee, I would like to thank you very 
much for the opportunity to represent the American Urological 
Association today. I know by listening to my voice, you may 
think this is a continuation of the Asthma and Allergy 
Foundation, but in reality we like to approach things from a 
little perspective in our field.
    Having said that, I'll introduce myself, I'm professor and 
chairman at George Washington University here in town. And I'm 
also the chairman for the American Urological Association 
Technology Council. I'm pleased to present our recommendations 
on behalf of the AUA today and our recommendations for the 
Fiscal Year 2000 for funding of urological research at NIH.
    I think the first thing is to thank the subcommittee for 
the strong support of NIH and CDC last year. We saw a large 
increase in NIH funding and it's the largest in history I'm 
told. And this first step was welcome news for all of our 
citizens and certainly for our patients, but I think everybody 
in general as well. And we look forward to working with you in 
the future to continue that progress.
    The AUA statement of record has been submitted. And it 
contains all of our formal funding recommendations. But I think 
today it's appropriate to emphasize three areas, three issues 
that we feel have a special importance to the urologic 
community and, therefore, to the general community: urologic 
cancer research; research in basic urological science; and then 
some of the needs that have been unmet so far.
    Well, it's no secret that prostate cancer has now come out 
of the closet, and this is extremely important. We've had lot 
of publicity about prostate cancer in the past year or so. But 
prostate cancer continues to be the most common diagnosed solid 
tumor in humans. That's not only men, that's all across the 
board. It's a very common problem. It is imperative we continue 
to improve the funding and our ability to detect and treat this 
disease. We now have evidence for the first time that 
biological testing has improved threefold the survival from 
prostate cancer when it's treated at an earlier stage. So 
that's a direct result of that type of funding. We join the 
National Prostate Cancer Coalition in asking for $240 million 
in prostate cancer research at NIH for the next fiscal year.
    While we know that prostate cancer is extremely important, 
it's been highly visible lately, it's also important not to 
forget other urologic cancers. I think very few people realize 
that one-half of all cancers in men diagnosed this year will be 
of urologic origin, that includes kidney cancer and bladder 
cancer. Some things that really have very little funding to 
date. This affects thousands of Americans and, in the case of 
bladder and kidney cancer, also affects women as well.
    As the budget for NCI increases, new funds must be 
allocated to these areas. And the AUA has a formal 
recommendation to develop a plan with the National Cancer 
Institute to show how these other urologic cancers can be 
addressed. Such a plan worked out with the urologic scientific 
community can help Congress and NIH determine the appropriate 
level of funding and which areas that need special emphasis.
    The second point that we want to talk about today relates 
to the basic urologic science program at NIDDK. In order to 
increase our understanding of the basic science of the prostate 
itself, we recommend that funding for prostate research at 
NIDDK, which is not cancer related, be increased by $20 
million. In addition to helping in the fight against prostate 
cancer, this research leads to new breakthroughs in two of the 
most common problems that affect the prostate: infections and 
the benign enlargement of the prostate which causes urinary 
difficulties.
    There's a pressing need also to increase research in 
urologic disorders affecting women: urinary incontinence, 
urinary tract infections, interstitial cystitis, and other 
problems of the bladder. NIDDK should be directed by Congress 
to move quickly beyond last year's conference, which was a 
start but it needs to be progressive and address the key 
clinical issues, basic research issues in women's urology.
    Lastly, I just want to comment on three areas that have 
really received virtually no attention through NIH, that 
includes male infertility and erectile dysfunction; pediatric 
urology, especially related to congenital anomalies of the 
genital urinary tract; and kidney stone disease. These are very 
common problems. In the area of male infertility, for example, 
funding is very limited although 50 percent of a couple's 
infertility problems may be due to male factors. Impotence 
affects as many as 30 million men. And, again, we've had a lot 
of publicity about erectile dysfunction this year. And there's 
virtually no Federally-funded research directed to the problems 
of erectile dysfunction.
    Another problem, urinary stone disease is a common and very 
painful occurrence for many Americans and a cause of 
significant loss of work. Although some effective treatments 
are available, there's almost been no work to advance this 
field, which is a key example of how you find some cure and 
then the impetus is lost. So we need to re-establish that for 
kidney stone disease. We don't have much in the way of 
prevention, for example.
    So the NIH needs to develop a game plan to address these 
common problems and present to the subcommittee for funding 
possibilities.
    The last comment involves urologic problems that are 
present at birth, which has a tremendous physical and 
psychological stress for both parent and child. The NIH really 
has minimal attention toward these type of problems of genetic 
origin and really has little effective treatment strategies for 
these abnormalities. And we would like to recommend that the 
NIDDK collaborate with other interested institutes in 
developing a strategic research plan to address these 
congenital urologic disorders. We would request that a minimum 
of $10 million in new funds be allocated to these new 
innovative research areas.
    With that, I conclude my testimony, and I thank you very 
much for your time and attention and would be very happy to 
answer any questions at this time.
    Mr. Porter. Dr. Manyak, thank you very much for your 
testimony. I'm sure you know that we don't fund by disease, 
although we do include in the report accompanying our bill 
strong emphasis in areas that we think are important areas of 
research that NIH ought to consider and, of course, prostate 
cancer research is certainly one of those areas. We've lost two 
very prominent members of this subcommittee to prostate cancer, 
George O'Brien and Bill Natcher, and I think members are very 
aware of the importance of research into that area.
    I want to say something that I didn't say earlier and that 
is that I don't think anyone should assume that simply because 
we were able to raise funding by 15 percent for biomedical 
research last year, we'll be able to do it this year. What we 
need is the American people telling every member of Congress 
the importance of this priority for our country. And I would 
urge those that think that this is a high priority not simply 
to assume that this subcommittee can do it again, but rather 
impact the Congress with a message that this is of the highest 
importance and then I think Congress will be able to respond.
    Thank you for your testimony.
    Dr. Manyak. Thank you very much.
    [The prepared statement of Michael Manyak follows:]

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                                           Tuesday, April 13, 1999.

                     CAREER AND TECHNICAL EDUCATION


                                WITNESS

LAURA WARD, PRESIDENT, ASSOCIATION FOR CAREER AND TECHNICAL EDUCATION
    Mr. Porter. Next, Dr. Laura Ward, president of the 
Association for Career and Technical Education.
    Dr. Ward, thank you for coming to testify before us today. 
We welcome you.
    Ms. Ward. Thank you, Mr. Chairman, and good morning. I'm 
Laura Ward, president of the Association for Career and 
Technical Education, which formerly was the American Vocational 
Association. I also work as a career guidance and placement 
coordinator in Montgomery, Alabama. And I'm also pleased today 
to have a nationally recognized student, Emily Buxton, joining 
us.
    Through the new Carl D. Perkins Vocational and Technical 
Education Act of 1998, Congress created new opportunities to 
improve career and technical education. States and local 
schools have more flexibility in exchange for higher standards 
of accountability. The future of our programs depend on meeting 
these new standards. With the help of the new law, career and 
technical education is uniquely positioned to prepare students 
for high-skill, high-wage careers because it combines work-
based and academic learning. It is the critical link in helping 
students continue their education and launch successful 
careers. Today, there is a major skilled worker shortage in 
America. And our programs stand ready to fill that gap.
    With this growing partnership between business and 
education, our programs are working to educate students in both 
an academic and technical environment. The John Deere Company 
based in the great State of Illinois has taken lead in this 
partnership by starting the Agtech program that teaches the 
skills to pursue a career in the highly technical agricultural 
equipment industry. Students learn about hydraulics and also 
engine fundamentals with equipment that is donated by John 
Deere, while also taking classes on writing and communication 
skills.
    And partnerships, and that's just one of the innovative 
ways that we have improved our programs, but we need your help. 
Federal funds promote change and improvement. Therefore, we 
respectfully request a $250 million increase for the Perkins 
Act and a $400 million increase in the Pell grant maximum award 
for Fiscal Year 2000. In recent years, the Perkins Act has 
received less than inflationary increases, but with our new 
reauthorization, we hope that Congress will make a stronger 
financial commitment to career and technical education.
    Thank you for this honor to appear before you today, and I 
will now ask Emily to share her thoughts?
    Ms. Buxton. Good morning. My name is Emily Buxton, and I'm 
honored to have Dr. Ward accompanied to speak on behalf of 
vocational career and technical education. I'm serving this 
year as vice president of the National FFA organization, and 
I'm currently a sophomore at the Ohio State University, 
majoring in agricultural engineering. And I would like to thank 
you, Chairman Porter, for letting me tell you about my positive 
experience in career and technical education.
    Though I was a strong supporter of farming from an early 
age because I did grow up on a family farm, I wasn't really 
sure that I wanted to go into agriculture for a career and that 
was my narrow understanding of the field. As an ag-ed student, 
learning came to life for me as I was able to apply all the 
concepts that I was reading about in my physics and biology 
books in a broader context. While I studied these principles in 
the classroom, I was able to take that knowledge out into the 
greenhouse and the field and the barn. I learned that careers 
in agriculture involve the entire food, fiber, and natural 
resource industry, everything from genetic engineering to sales 
and marketing.
    I also learned through real life experiences. I worked with 
ag-ed instructors, parents, and others in the community to 
develop a supervised agricultural experience program through 
which I raised beef cattle and sheep and worked for an 
agricultural broadcaster. I invested my own money and made my 
own decision based on advice from my agricultural support 
network. And these experiences enriched my understanding and 
appreciation of ag-ed.
    My participation in the National FFA organization, which is 
one of 10 vocational student organizations recognized by the 
Department of Education, has been one of the highlights of my 
experience. Through our organization's conferences, I have been 
able to meet students nationwide with diverse backgrounds and 
interests while developing leadership, communication, and 
problem-solving skills which are crucial in today's workplace.
    It is my belief that career and technical education have 
the potential to open countless doors into a variety of 
exciting and ever-changing industries. It has already done this 
for me and thousands of others. Substantial and sustained 
Federal support for career and technical education will ensure 
that these programs grow stronger and create even more 
opportunities for students at all levels.
    It is for this reason that I join ACTE in respectfully 
requesting increased funding for Fiscal Year 2000. I thank you 
for this honor and opportunity, and will be glad to answer any 
questions at this time.
    Mr. Porter. Well, Emily and Dr. Ward, we obviously put this 
at a very high priority. Again, you may see some ups and downs 
before where we get where we want to go. Be patient. We'll all 
work together. And I know the Department puts this at a very 
high priority as well--we'll work together to try to do what 
you want us to do.
    Thank you for coming to testify.
    Ms. Buxton. Thank you.
    Ms. Ward. Thank you for your support.
    [The prepared statement of Laura Ward and Emily Buxton 
follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

                                           Tuesday, April 13, 1998.

                SOCIAL SECURITY MANAGEMENT ASSOCIATIONS


                                WITNESS

RON NIESING, PRESIDENT, NATIONAL COUNCIL OF SOCIAL SECURITY MANAGEMENT 
    ASSOCIATIONS
    Mr. Porter. Our next witness is Ron Niesing, president of 
the National Council of Social Security Management 
Associations.
    Mr. Niesing, it's good to see you.
    Mr. Niesing. Thank you, Chairman Porter, and thank you for 
the opportunity to present the views of over 3,000 members of 
SSA's field office and tele-service management team. We urge 
you to fully fund SSA's Fiscal Year 2000 budget request of 
$6.889 billion, which would allow SSA to maintain current staff 
and services. We also ask you to consider some very unique 
service needs that confront SSA now and in the future.
    If Federal agencies were placed into a city structure, SSA 
would be the Main Street of America. We are the gateway to many 
other community services, Federal, State, and local. In our 
community-based field offices and tele-service centers, we meet 
face to face with 34 million people each year. We handle 120 
million telephone calls. Our work results in good news that 
does not make headlines. We provide financial security to 45 
million citizens and due to our efforts, the public has a 
better overall impression of how our United States Government 
works. We work with other community agencies and providers to 
help our most indigent citizens meet their basic needs. We are 
doing good things to people everyday.
    Visitors to our facilities and employees who work there 
deserve a safe environment. Violent incidents have increased in 
offices and so have the cost of providing security. I commend 
SSA for taking steps to enhance security in our offices, but 
this comes at a tremendous cost to other operational needs. 
Because of SSA's unique place as the face of Government, I ask 
that Congress consider separate funding to fund the agency's 
security needs.
    SSA is committed to answering 95 percent of telephone calls 
to the 800 number within 5 minutes. However, meeting this goal 
comes at a tremendous cost. There are 12 to 15 days each year, 
check days and after holidays where it may be possible to 
answer only 80 percent of calls. SSA must, therefore, answer 
well over 95 percent of calls during the rest of the month to 
meet the overall goal. Resources to do this come from our 
program service centers. Right now, they have their largest 
backlogs in history, over two million items pending. Because 
these employees must spend extra time on the telephone to meet 
the 95 percent goal. Record changes are delayed, which results 
in additional calls to the 800 number and more visits to our 
field offices from frustrated and angry beneficiaries.
    We urge this committee to work with SSA to redefine the 800 
number service goal to exclude those 12 to 15 high-volume days 
in order to restore better balance to our overall work needs.
    SSA is now piloting immediate claims via the 800 number for 
some retirement and survivor claims. Field offices have always 
taken immediate claims and appointments can be scheduled to 
meet both the agency's and the caller's needs. The SSA has 
received high praise for its handling of this work. The public 
has not asked for this new service. We question the need to 
take immediate claims from a worker who is not eligible for 
benefits for at least 90 days. Expanding immediate claims also 
means more work in the tele-service and program service 
centers, which are always struggling to meet the 95 percent 
call access goal. There are also cost factors to consider: 
increased 800 number toll charges versus claims taken in local 
offices that do not incur additional toll expenses.
    We urge this committee to work with SSA on its tele-claims 
taking practices to ensure that overall public needs are being 
met in the most cost-effective manner.
    SSA faces an extraordinary wave of employee retirements in 
the next five to seven years. Replacing experienced workers and 
providing training for new employees will place significant 
strain on service delivery. New employees will need trainers 
and mentors, but individuals who fill those roles now will be 
retiring. We urge Congress to set aside special funding to meet 
both agency and public needs as SSA moves through this 
retirement wave.
    This budget stabilizes SSA staffing at approximately 66,000 
employees. However, our workloads continue to grow. Continuing 
disability reviews and SSI reviews are labor-intensive. New 
disability initiatives and back to work efforts cannot be 
successful without local face-to-face contacts with the 
beneficiary. Additional resources beyond those called for in 
this budget are needed for these responsibilities to be carried 
out successfully.
    SSA has significantly downsized its field and tele-service 
management ranks. Workload reviews and efforts to combat 
program fraud and abuse are adversely impacted. Less time is 
devoted to public education, an especially important activity 
during this time of national debate on Social Security. The 
demands of local labor management negotiations and the threat 
of increased bargaining rights for Federal unions exacerbate a 
stressful situation. Management in SSA devotes many extra hours 
to meet all our public service challenges. We urge Congress to 
pass the overtime bill, introduced by Representative Davis of 
Virginia, to fairly compensate management for all work 
performed. This is an issue of both fairness and recruitment as 
the agency must replace many managers who will retire in the 
next five to seven years.
    SSA is truly a high impact agency. To ensure continued 
success, SSA must address office safety, service delivery 
mechanisms, future staffing and training needs, and public 
education.
    I appreciate the opportunity to discuss these issues with 
you, and would be happy to answer any questions at this time. 
Thank you.
    Mr. Porter. Mr. Niesing, we have not yet heard from the 
Social Security Administration because of our schedule 
disruptions. We'll be pleased to raise some of these issues 
with the administrator. And let me make sure I heard you right. 
You're suggesting we have a separate line item in Social 
Security for security?
    Mr. Niesing. Yes, over and above what our regular budget 
would be because of the 1,300 offices and to allow for security 
measures, it's very expensive. And what the agency is now doing 
is working within its regular budget to provide that. So that 
eliminates dollars that could be used in other program needs. 
So we would like to see separate funding for SSA because we do 
feel we are the face of Government for many of the public today 
to provide that.
    Mr. Porter. You certainly are. All right, thank you very 
much for your testimony this morning.
    Mr. Niesing. Thank you.
    [The prepared statement of Ron Niesing follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

                                           Tuesday, April 13, 1999.

                    PROTECTION AND ADVOCACY SYSTEMS


                                WITNESS

ERIN DINKLENBERG, ON BEHALF OF THE TASK FORCE ON DEVELOPMENTAL 
    DISABILITIES OF THE CONSORTIUM FOR CITIZENS WITH DISABILITIES
    Mr. Porter. Next, is Erin Dinklenberg, representing the 
Task Force on Developmental Disabilities of the Consortium for 
Citizens with Disabilities.
    Ms. Dinklenberg, welcome.
    Ms. Dinklenberg. Good morning. My name is Erin Dinklenberg. 
I'm very glad to be here this morning on behalf of Protection 
and Advocacy Systems, university-affiliated programs, and 
developmental disability councils. I am 15 years old and a 
sophomore in high school. I live in Lindenhurst, Illinois, 
about 40 miles north of Chicago.
    What kind of kid am I? The kind of kid who likes to talk on 
the phone, blasts music, have friends, and dream about my 
future. I'm the kind of kid who loves to learn. My favorite 
subject is English. I love to debate and I love to act on stage 
and maybe even write a screenplay. I work hard to go to school 
and get good grades.
    I have a traumatic brain injury and I have Friedreich's 
Ataxia. Friedreich's Ataxia is a progressive disorder of the 
nervous system. The main symptom of the disease is ataxia, 
shaking movements and unsteadiness. My disease is both life-
threatening and life-shortening. It affects my ability to walk, 
think, and write. My speech can be difficult, so please bear 
with me. It also involves the heart and because of this, 
sometimes I have shortness of breath.
    My disease will continue to worsen as I grow up. Right now, 
I can sit still with the help of my aide at school and from my 
parents. I use a wheelchair when I am tired or under stress 
because both can make my walking worse. However, it is 
important for me to walk and to keep using my muscles as long 
as I can even though it can be hard and my balance is unsteady.
    The past two years in public high school has shown me how 
good things can get and how bad things can get. Showing me how 
good things can get with the help of an organization like 
Protection and Advocacy Systems. During the month before I 
entered high school, my mom and I had several meetings with the 
school to prepare me for my freshmen year. Despite our efforts, 
it was clear they weren't prepared. No transportation was in 
place. The school's physical therapist had recommended that the 
school install railings on their ramps, but the railings had 
not been installed. The school was mostly concerned about my 
falling, not integrating me into the school. They kept 
insisting I use the wheelchair, even after my doctor wrote a 
letter and said my health would deteriorate faster if I was in 
a wheelchair all day. The school still pushed for me to use the 
wheelchair rather than allowing me to walk. And they said my 
parents were being unreasonable to want me to walk.
    My mom contacted the Equipper Equality, the Illinois 
Protection and Advocacy Systems and they have made a big 
difference. There are now railings on the ramps and I walk all 
day with an aide. They have also advocated for other things 
that the school promised but did not provide, such as a 
computer and after school services. Because of my unsteady 
hands, I have difficulty writing. The school agreed to provide 
a National Honor student as a note-taker, but they never did 
until Equipper Equality got involved. I need good notes to get 
better grades. I want to go to the University of Illinois to 
study to be a writer. U of I is great because of their 
accessibility.
    The Protection and Advocacy Systems not only advocates, but 
they educate. They teach my school about the strengths, needs, 
and rights of people with disabilities. Their services are 
free. This is especially important because parents of kids with 
disabilities often don't have the money to hire attorneys.
    I have needed help in several ways and it has been a 
struggle to get it. I love debate but the school has not 
provided help for me to get there, so I have not debated at all 
this year. It made me feel very bad. I was also told I had to 
give a week's notice to attend any dances or school events 
because the school does not have an accessible door opened 
after 3:30 or on weekends. My friends decided a couple of hours 
before a game, that is too late, so I can't go. For the 
homecoming dance, I gave the week's notice but I was still 
locked out. It was so embarrassing. In the past, I even had 
trouble getting into the building to attend school because no 
one was there to assist me.
    Sometimes I feel like a big inconvenience and I just want 
to give up. The worst thing that has happened this year was our 
winter choir concert. I had never worn a choir robe and didn't 
know if I would be able to walk in one. So I asked my physical 
therapist if we could practice. The choir director said it 
would be best to practice on the rehearsal day. Later in the 
week after singing rehearsal, students went on to their next 
class. I stayed to talk to my teacher and practice walking with 
the teacher's permission. I was just waiting for the honors 
choir to finish so that I could talk to my teacher and get a 
choir robe. My aide accused me of trying to skip class, but I 
hadn't practiced yet. She left and brought two deans into 
rehearsal instead of my counselor. They berated me in front of 
two choirs. I got so upset that I had difficulty breathing. I 
couldn't even speak. I had chest pains and no one called the 
nurse. After school, dad took me to the doctor and from there, 
I was sent to the hospital in an ambulance. I ended up being 
admitted to the cardiac care unit for a couple of days, and I 
missed the choir concert. I was so disappointed and I was 
afraid to go to school because I felt so humiliated and 
embarrassed.
    Equipper Equality is helping me and my school with all 
these problems. At a recent service meeting, the providers, 
teachers, and parents, everyone shared ideas and worked 
together. The goals for kids with disabilities are really 
pretty simple. We don't want to be left out. We want a chance 
to participate normally. We need support and should not be made 
to feel guilty if we ask for help.
    You representatives are doing a good job and leaving your 
mark on our country. By passing laws like IDEA, you are giving 
kids like me a chance, a chance I want to make a difference 
too. Because I have a life-shortening illness, now is my time. 
Of course, school won't be the end of things for me. I will 
need transition services and advocacy as a young adult to fully 
participate in college and employment.
    The Protection and Advocacy Systems, UAP, and DDD Councils 
will help make this happen. Without them, people like me will 
lose out. Please remember us when you make your decision. 
Without your support, we will lose. But our world will also 
lose what we have to give.
    Thank you very much.
    Mr. Porter. Well, Erin, first of all let me ask you, what 
school do you go to?
    Ms. Dinklenberg. I go to Grayslake.
    Mr. Porter. Grayslake High School?
    Ms. Dinklenberg. Yes.
    Mr. Porter. I assumed when you said you lived in 
Lindenhurst, that you didn't live in my district. You're just 
outside of it, as is Grayslake. But, first of all, let me tell 
you that Illinois Protection and Advocacy is to me Dolly 
Hostrom. And Dolly Hostrom was the State representative that 
took my seat in the Illinois General Assembly when I was 
elected to Congress, a lady who has done an absolutely 
wonderful job there. And although this line item has often been 
zeroed out in administration budgets previously, we have 
consistently put the funds in because we know that they help 
young people like you and others that suffer from disabilities 
to cope with the world and to achieve your own goals and 
dreams. And so you can be assured that we're going to do our 
best to provide funding for them.
    It seems to me that your congressman and his office might 
be able to help with some of these personal problems that 
you've experienced with the school. I would be happy to do 
whatever I can to help. It seems to me that someone who faces 
the difficulties that you face ought to be given a chance and 
that the school ought to be cooperating in every way they 
possibly can to give you that chance. And I'm just dismayed at 
what you've told me about this school's reaction to the 
problems and to your needs. That seems to me that should not be 
tolerated in our country, and we ought to be able to address 
this.
    So let me try to work with you personally on that. And on 
the funding, I guarantee you we'll do the very best we can to 
provide the funds that are needed to help people in similar 
circumstances.
    Thank you for coming to testify.
    Ms. Dinklenberg. Thank you.
    [The prepared statement of Erin Dinklenberg follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. Our final witness today is a celebrity. It's 
Jim Kelly, the former quarterback for the Buffalo Bills. And 
he's here to testify in respect to Krabbe's disease, and he's 
accompanied by his Congressman, Congressman Jack Quinn of New 
York. Jack, we're pleased to see you and we'll recognize you to 
start with.
    Jim, thanks for being with us and, Ms. Kelly, thank you for 
being here as well.
    Mr. Quinn. Mr. Chairman and Mr. Dickey and other members of 
the subcommittee that have been here this morning. Thank you 
for the opportunity to be with you here today.
    I would just like to say before we begin and before Jim 
Kelly begins that, as a former high school teacher and having 
heard the testimony of Erin, I would like to offer any 
assistance I could to you and couldn't agree with you more that 
all students deserve every opportunity to succeed, particularly 
students like Erin. To the extent that any of us in the House 
can help you do that, we want to do that.
    I also want to say before I begin that I salute you in your 
leadership here in the Congress for what you do, a very, very 
difficult, difficult job, particularly this morning. You know 
the witnesses you've seen here and the individual cases that 
you've heard, and dealing with difficult situations and having 
to make difficult decisions on what is and isn't funded is 
never an easy job for any of us. Your leadership on this 
subcommittee, the full committee, and the House of 
Representatives and I believe across the country is something 
we all ought to be more grateful for. And while I've said this 
to you before on the floor, I need to say that publicly that 
you've been an outstanding chairman, and we appreciate your 
hard work.
    But it is an opportunity for me as a representative from 
Buffalo, New York, Western New York, to introduce to you Jim 
Kelly and his wife Jill, who are here today. No doubt many of 
the subcommittee members and members in the audience, if any 
reaction is indicative of the response that we've received here 
on the Hill this morning since Jim and Jill have been in town 
and around. Lots of people know about Jim Kelly and his years 
as a quarterback for the Buffalo Bills. What you may not know 
about is his work over the years for various children's 
foundations in and around Buffalo and western New York and 
across New York State over the years. He has been committed to 
helping others less fortunate in his entire professional 
football career.
    However, today, he has an opportunity to talk about a 
personal situation that he experiences, he and his wife, and 
the rest of their family, Erin, their four-year-old, soon to be 
four-year-old daughter. And I can think of no better person 
than Jim Kelly to help convince our colleagues, Mr. Chairman 
and Mr. Dickey, in the House of Representatives about the 
importance of Government-funded research into childhood 
diseases.
    Jim and Jill Kelly have displayed remarkable courage and 
determination in finding a cure for Krabbe Disease through 
their Hunter's Hope Foundation in Buffalo and western New York.
    We know, Mr. Chairman, that NIH is one of the world's 
foremost biomedical research centers and the Federal focal 
point for biomedical research in the United States. The goal of 
NIH research is to acquire new knowledge to help prevent, 
detect, diagnose, and treat diseases and disabilities, 
including those that affect children.
    The Kellys and many friends in western New York in the past 
year and a half have raised almost $3 million on their own. And 
we're here this morning, the Kellys are here today to talk 
about a situation that we think NIH and the subcommittee should 
at least consider when we look at our difficult budget 
decisions.
    So I'm proud and honored to introduce a constituent of 
mine, but someone known across the country, Mr. Jim Kelly. Jim?
                              ----------                              

                                           Tuesday, April 13, 1999.

                       KRABBE'S DISEASE RESEARCH


                                WITNESS

JIM KELLY, CITIZEN, RETIRED QUARTERBACK, BUFFALO BILLS
    Mr. Jim Kelly. Thanks, Congressman Quinn. Good morning, 
well, it's afternoon now. Good morning, Mr. Porter and Mr. 
Dickey. My name is Jim Kelly, as Congressman Quinn told you. 
Those of you that enjoy professional football may recognize me 
for ESPN's NFL Countdown or possibly the retired quarterback of 
the Buffalo Bills, but today I appear before you as a proud and 
humble father of our little soldier, Jill and I, Hunter James 
Kelly, and a founder of the Hunter's Hope Foundation.
    I've traveled here to share with you a story about courage, 
unconditional love, family dedication, determination, and hope. 
On behalf of my son, Hunter James, and the Hunter's Hope 
Foundation, I am present here today with hope that you will 
recognize the need for an increase of appropriations for the 
National Institutes for Health.
    On January 31, 1997, I retired from the game of 
professional football. And within two weeks of my retirement, 
my wife, Jill, gave birth to our son, Hunter. Hunter was born 
on my birthday, which is February 14th, Valentine's Day. My 
dream had come true. I was blessed with a son that I've always 
wanted.
    Hunter passed all the newborn tests with flying colors, 
weighing in at 7 pounds, 14 ounces. The first few months of 
Hunter's life, he appeared to be a normal, healthy baby, 
showing strong signs of colic. But by the end of his third 
month, he spent most of his waking hours screaming. When he 
became even more irritable, started stiffening his arms and 
legs and was unable to achieve any developmental milestones, 
like smiling, reaching for toys, and even holding his head up, 
our pediatrician said he was showing signs of Cerebral Palsy. 
We were devastated.
    Because Hunter's health continued to decline, his body 
became stiffer. He was having trouble swallowing and began 
experiencing mild seizures, which we had him evaluated by our 
child neurologist. Hunter's neurologist decided to test his 
blood for a family genetic diseases called leukodystrophies.
    On June 23, 1997, our worst nightmare came true. Hunter was 
diagnosed with Krabbe's Disease, also known as Globoid Cell 
Leukodystrophy. We had never heard of this disease, just as 
probably most of you all haven't. Krabbe's Disease is one in a 
family of nine leukodystrophies. Children who inherit this 
disease lack an important enzyme that is component of the white 
matter of the brain called myelin. This enzyme deficiency 
produces toxins in the brain causing myelin loss and neurologic 
symptoms.
    Signs and symptoms of infantile Krabbe's Disease usually 
appear at three to six months of age. Extreme irritability, 
development delay or regression and increased muscle tone are 
among the first symptoms to appear. These early symptoms are 
followed by seizures, unexplainable fevers, difficulty 
infeeding and paralysis. Eventually, children lose all mental and motor 
functions, become deaf and blind, and usually do not survive beyond the 
age of two.
    As you can imagine, each and every day is a struggle for 
our little buddy. I've been surrounded by tough individuals 
throughout my entire playing career, but never have I witnessed 
more strength and toughness than that of my son Hunter.
    I would like to share with you all a brief description of 
what a typical day is like for our son. When Hunter wakes up 
every morning and before he goes to bed, he is given various 
medications that help him feel more comfortable by controlling 
his irritability, his stiffness, and his seizures. Following 
his medications, he is given therapy, respiratory therapy, 
which he receives five times a day. Hunter has been treated for 
pneumonia over a dozen times, being hospitalized four times for 
severe pneumonia attacks. In January 1998, Hunter spent two 
weeks in the ICU at Children's Hospital, nine days of which he 
survived on a respirator. Although Hunter is on oxygen 24 hours 
a day, chest therapy is still an absolute must in his daily 
schedule to help him and to prevent him from lung damage.
    After chest therapy, Hunter is ready to have his first of 
three feedings or breakfast, as we call it. He is fed through a 
feeding tube in his stomach because he is unable to swallow 
like most of us. Hunter weighs about 20 pounds and has 
maintained that weight for the past two years because he is 
unable to handle large volumes of formula on a daily basis. 
Breakfast is usually followed by either physical therapy or 
occupational therapy. Hunter is not able to voluntarily move 
any part of his body. Therefore, aggressive physical therapy by 
trained professionals is an absolute necessity everyday.
    Hunter requires around-the-clock care, so our family takes 
turns watching over him night and day, suctioning him 
constantly to ensure that he does not choke on his own saliva 
or aspirate on his formula is a must.
    Although Hunter is constantly busy, we still find time in 
his busy schedule and ours to play and read lots of books with 
his big sister, Erin. Every day that Hunter is with us is a 
blessing for us, but we are also reminded daily that he is 
constantly battling a disease that is slowly taking his life.
    At the time of Hunter's diagnosis, we were informed that no 
specific treatments were available and that bone and cord 
blood, stem cell transplants have never been done on a Krabbe 
patient. We were basically told to take our son home, make him 
comfortable, and watch him slowly die. I can remember leaving 
Children's Hospital, the worst day of my life, thinking we had 
to do something about this dreadful issue and disease.
    Most doctors have never even heard of Krabbe's Disease and 
they certainly don't know how to treat the suffering children. 
Few scientists and researchers have enough funding to even 
approach such a rare family of diseases.
    As a result of complete heartbreak and frustration, my wife 
and I have decided to dedicate the rest of our lives to finding 
a cure for Krabbe and other leukodystrophies. Hunter's Hope was 
formed in September of 1997. Our family started this foundation 
in hope that through sharing Hunter's story, parents all over 
the world will give their children more time and love and will 
thank God everyday for their precious gifts of life. Hunter's 
Hope is our lifelong commitment to increase public awareness of 
Krabbe and other leukodystrophies so that children may have 
early detection and treatment.
    Our ultimate goal is to help raise funds to support 
research efforts to find a cure. As we say, today there is no 
cure. But tomorrow there is Hunter's Hope. Although our faith 
helps us remain positive, each and every day we are reminded 
that Krabbe leukodystrophy is a fatal and very devastating 
disease. Hunter's Hope receives letters and e-mails from 
families around the country that wish to share their daily 
struggles in coping with the loss of their children. Through 
various Hunter's Hope fundraising events and organized medical 
symposiums, Jill and I have been very fortunate to meet some 
very special children and families. You quickly realize how 
unimportant sports talk is when your conversation is focused on 
suction machines, feeding tubes, and ultimately the quality of 
life for your son or daughter.
    We all share a strong bond and a few important things in 
common. We are blessed with special children, and we are hurt 
and frustrated that very little is being done to help stop this 
disease that is viciously taking our children's lives.
    Through Hunter's Hope, we have been able to make the public 
more aware of Krabbe and other leukodystrophies, and we will 
continue to actively organize and participate in fundraising 
events in order to raise research dollars. Bone marrow and cord 
blood stem cell transplantations are now possible treatments, 
which give hope to children diagnosed early in life.
    Hunter's Hope recently advertised a call for grant 
applications for research funding that will assist in projects 
that focus on finding treatments and cures. To date, we have 
received over 80 grant application requests, but we need the 
dollars.
    Mr. Chairman, Mr. Dickey, and other subcommittee members, I 
thank you very much for taking the time to listen to my story 
and hope that through my efforts and the diligent efforts of 
many other organizations, you will see that there is desperate 
need for continued increased funding for these terrible 
diseases. The children need your help.
    And I want to thank you very much for taking the time to 
listen, and I also want to thank Congressman Quinn, and, of 
course, I want to thank my wife, that is the reason that Hunter 
has beaten the odds, which the average life is only 14 months 
and our son now has turned two on Valentine's Day. And each and 
every day that he wakes up and his beautiful face there, it's a 
blessing for us. And I thank my wife.
    Mr. Porter. Jim, thank you for your testimony. Can you tell 
me, if you know, how many children are affected by this class 
of diseases? And I did not hear previously of Krabbe. In fact, 
I mispronounced it.
    Mr. Kelly. I'm sorry to interrupt. With Krabbe's Disease, 
they said they're not absolutely sure because many children die 
before they're properly diagnosed. But about 60 a year, but 
with leukodystrophies, which is one of the nine, there is close 
to over 100,000 children affected with this. And this is 
something we feel that by working with the nine 
leukodystrophies that we are, by doing research, whether it's 
on Krabbe's Disease or other leukodystrophies, you're helping 
all nine.
    Mr. Porter. I was interviewed by a reporter for the New 
York Times last week who said to me: ``I understand you're 
going to listen to public witnesses. Why do you do that? What 
do you get out of that? What do you learn?'' And I said, ``You 
would be amazed at the education that members of the 
subcommittee receive and I receive about things that do not 
come up in our hearings, that we know nothing about.'' And I 
described another childhood disease that had been brought to 
the attention of the subcommittee some years ago where parents 
had brought their two boys, in fact, a number of years in a row 
and suffered the same kinds of symptoms at least as you're 
describing for your son, Hunter. And I said, ``While we don't 
fund by disease, we sure do, as members of the subcommittee and 
Members of Congress, have things that we are vitally interested 
in.'' And when we hear about something like this, we have an 
opportunity to fashion language for the report that accompanies 
the bill that tells NIH that we're concerned about these 
matters. Now NIH doesn't have to listen to that, but believe me 
they very often do.
    And I want to work together with your Congressman, who is 
one of the most able Congressman that we have here in 
Washington, to fashion some language for this year's report. 
Jack, you and I will work together on that to bring this 
strongly to the attention of NIH and hope that we get the kind 
of response that I'm sure we will to put some resources in 
helping this situation and trying to find a way of preventing 
what has happened to your son.
    If people would sit here and listen as people like you 
testify and bring to the attention of others what is happening 
in our society, I don't think that there would be any doubt 
about the commitment to finding a way to discover the causes 
and cures of diseases like this and a greater understanding of 
the toll it takes, not only on your son, but on your family and 
others who have the same circumstances.
    Mr. Kelly. That's for sure.
    Mr. Porter. So we're going to do the best we can to respond 
to you, and we really thank you for your advocacy and your 
educating us today.
    Mr. Kelly. Thank you very much.
    Mr. Porter. Thank you very much for being with us. Thank 
you, Jill. Thanks, Jack.
    Mr. Quinn. Thank you, John. I appreciate it very much.
    [The prepared statement of Jim Kelly follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. The subcommittee will stand in recess until 
2:00 p.m.
    Mr. Porter [presiding]. The subcommittee will come to 
order.
    This is the second panel of our 10 panels of public 
witnesses. The staff has a reminder for all of you. As we begin 
the hearing, I want to remind witnesses of two provisions of 
the rules of the House. In addition to their written statement, 
nongovernmental witnesses must submit a curriculum vitae and a 
statement of Federal grant or contract funds that they or any 
entity they represent have received. If you have any questions 
concerning the applicability of this provision, or questions as 
to how to comply, please contact the subcommittee staff.
    In order to accommodate as many members of the public as 
possible, we have scheduled over 20 witnesses for each session, 
and are still not able to hear from all who wanted to testify. 
Overall, we will hear from over 200 witnesses in these 10 
panels. As a result, I have to enforce the rule limiting 
testimony to five minutes very strictly. I would ask that, as 
you testify, you keep this limitation in mind, in consideration 
for the other witnesses that must follow you.
                              ----------                              

                                           Tuesday, April 13, 1999.

                             HEART DISEASE


                                WITNESS

ERIN C. BOSCH, PRIVATE CITIZEN
    Mr. Porter. We begin with Erin C. Bosch, a private citizen 
regarding heart disease. Ms. Bosch.
    Ms. Bosch. Mr. Chairman, I am honored to have the 
opportunity to speak to you today. My name is Erin Bosch, and 
you may recall I have addressed the committee on two previous 
occasions. Today, I am here once again to testify on behalf of 
not only myself, but the 32,000 children in the United States 
who are born with congenital heart defects each year.
    Most of us are aware that heart disease is the No. 1 killer 
and the leading cause of disability in adults in this Nation. 
Few people recognize that heart defects are the most common 
defect of the newborn. Of the 32,000 children born each year 
with heart defects, around 2,300 die before their first 
birthday. The rest of us live with the consequences of heart 
disease. Many have their lives cut short due to heart failure.
    Thanks to past funding for heart research, about 1,000,000 
Americans born with heart defects are alive today. While we are 
grateful for each day that we are alive, we, unlike other 
healthy children, have not been able to experience what it is 
like to run the length of the soccer field without struggling 
for our next breath; nor have we experienced the thrill of 
scoring the winning basket for our school team. Some of us are 
hardly able to walk a flight of steps without needing to rest.
    I was born with genetic heart disease called hypertrophic 
obstructive cardiomyopathy. This disease caused my heart muscle 
to overgrow and block the blood flow in and out of my heart. It 
also affects the valves of my heart, causing the blood to back 
up in the wrong direction. Along with this disease comes a high 
risk for heart attack; dangerous heart rhythms also often cause 
sudden death.
    Two years ago in October, I was at the Mayo Clinic having 
open heart surgery. This procedure, called a septal myectomy, 
was designed to shave away a portion of the heart muscle that 
causes the obstruction. This procedure was originally pioneered 
at NIH's National Heart, Lung, and Blood Institute and was my 
last resort, aside from transplantation, for a healthier life.
    It was funding that this committee provided that allowed 
for this type of successful research. Without this funding, the 
option of a healthier lifestyle would not have been possible 
for me. Other research dollars have successfully contributed to 
the development of pacemaker and intra-cardiac defibrillators 
that myself and other children depend on.
    Current research is being forged for patients with HCM for 
less invasive therapies with, hopefully, long-term success. 
Committed research dollars are essential for this research to 
continue.
    I am one of the lucky ones. My surgery was successful, and 
after one month at the Mayo Clinic I was able to return home. 
My struggle, however, is not over. My physicians only hope my 
heart muscle remains stable, so no further procedures will be 
necessary, but they just don't know. There have been advances 
for children like me, although many still die prematurely.
    Most people think heart disease is a problem that only 
affects older people, but I am living proof they are wrong. 
According to recent studies, 36 percent of young athletes who 
die suddenly have undiagnosed hypertrophic cardiomyopathy.
    Presently, there are at least 35 different types of 
recognized congenital heart defects affecting the newborn 
population. Some can be corrected surgically; others cannot yet 
be repaired, and these children die. One of these children 
might one day be your child or grandchild.
    I have great faith in the determination of our scientific 
researchers who work day and night to find new treatment 
methods for those who suffer with illness and disease. I also 
have great faith in you, as the doorkeepers of governmental 
funding, to provide the necessary funds for children who have 
been born with heart defects.
    Thank you for the opportunity to speak to you today. I am 
confident that you will not forget me and the other young 
people like me who depend on you for funding for this vital 
research. We, too, like you, desire to live long, productive 
lives.
    Mr. Porter. Erin, you have testified before. How many times 
have you testified now?
    Ms. Bosch. Twice now.
    Mr. Porter. This is the second one? When was the last?
    Ms. Bosch. No, this is my third.
    Mr. Porter. The third time, yes.
    Ms. Bosch. Two previous, yes.
    Mr. Porter. And how old were you when you first testified?
    Ms. Bosch. I believe 14.
    Mr. Porter. And how old are you now?
    Ms. Bosch. Seventeen.
    Mr. Porter. Seventeen? And you have just had this operation 
which has a lot of promise, but, as you said, doesn't 
necessarily get you all the way there.
    Ms. Bosch. That is correct, yes. We are working on it, 
though.
    Mr. Porter. You are making good progress. And I agree with 
you about your faith in the researchers. I think that we have 
the same faith. We want to provide them with the resources they 
need to make advances that we know can be made.
    I think I will have to give my short sermonette at this 
point, since we are at the start of the hearing, in saying this 
is going to be a very tough year. I think most people in our 
audience know this, and I am not talking just about biomedical 
research; I am talking about all the subjects before this 
subcommittee over which we have jurisdiction.
    Last year, the budget caps were in the end breached by 
about $20,000,000,000. This year's budget resolution holds us 
to the caps. That means that we are going to receive 
allocations that are very low, and that is going to make it 
very, very difficult, at least initially, to get where we want 
to go.
    I believe very strongly in the end that this good economy, 
which is growing far faster than anyone had imagined and is 
bringing in revenues to the Treasury that were not expected at 
this point in time, will convince all of us that we can afford 
to go and make some adjustment in the caps, justified by 
economic growth; that we don't seem to convince everyone we 
should do it right now. I have been saying publicly for some 
time that we ought to raise the caps moderately and be able to 
provide funding for many of the priorities that I think are 
very important for this country, but we haven't yet been able 
to convince people to do that. In the end, I think we will.
    But all of you concerned about the funding priorities 
should recognize that, first, we have made great progress on 
bringing the budget deficit under control. The economy is 
growing strongly. I believe we can make some moderate 
adjustment to the caps and still make that kind of progress, 
and in the end I think we will, but there is going to be some 
ups and downs between where we are presently. We are going to 
pass a budget resolution tomorrow.
    Let me say this: Most appropriators just want to get a 
budget resolution. They don't want to argue about it. Last year 
it went on for months, and we never did get a budget 
resolution. I think all of us are anxious to get that part of 
it over with, so we can sit down, complete our hearings, mark 
up our bills, and get them working toward conference, and going 
to the President's desk as early as possible.
    All of us want to avoid the debacle that we had last year 
with an omnibus bill, where everything was thrown together and 
negotiated with the Executive branch. I think you are going to 
see a much more orderly process this year. I think eventually 
we will make the adjustments I am talking about, but it is 
going to take some time to do that.
    So that was words for you, but it is also words for 
everyone else in the room today. What we need is to--and that 
is why we have these hearings--get guidance on what our 
priorities ought to be, so when we sit down to mark up, we will 
have a good understanding of what you think is most important 
for our country to commit to.
    Thank you again for your testimony.
    Ms. Bosch. You are very welcome.
    Mr. Porter. I am glad to see you are doing so well.
    Ms. Bosch. Thank you.
    Mr. Porter. Thank you.
    [The prepared statement of Erin Bosch follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

                                           Tuesday, April 13, 1999.

                          PARKINSON'S DISEASE


                                WITNESS

JOAN I. SAMUELSON, PRESIDENT, PARKINSON'S ACTION NETWORK
    Mr. Porter. Our next witness is Joan I. Samuelson, the 
president of the Parkinson's Action Network.
    Ms. Samuelson, nice to see you.
    Ms. Samuelson. Good afternoon, Mr. Chairman. Thank you for 
this opportunity to testify, and thank you, particularly, for 
your championship of the effort to double the NIH budget. I 
know how profoundly you believe in that and how hard you are 
working for that, and have worked to this point, including the 
terrific increase we have had for this current Fiscal Year. I 
greatly appreciate that.
    My written testimony, reviews Parkinson's Disease, what it 
is, the symptoms, the conventional treatment of L-dopa. It 
reviews the areas of research for which there is tremendous 
excitement and potential, and it talks about the sad history of 
funding of Parkinson's Disease, how poorly funded it has been, 
how unfairly it has been treated, and how that has continued, 
despite enactment of the Udall Act.
    What I would like to do is submit that for the record, and 
then essentially summarize it in three points, because I think 
it boils down to that.
    The first is that scientists stand ready to conduct an 
intensive campaign to deliver a rescue of the million of us who 
suffer from Parkinson's Disease. I know that kind of lofty 
language is used all the time in your work, but it is 
absolutely true in terms of Parkinson's Disease. I go into a 
little bit of detail on page 2 of my testimony about the 
several areas that are so tremendously promising right now.
    One example is a really breath-taking discovery this year 
that was published in The Journal of the American Medical 
Association, which has established that conventional 
Parkinson's Disease, where the symptoms arise at age 50 or 
thereafter, is, in fact, apparently, an environmental disorder. 
It also makes the point that, for those of us who have, what 
they call, young onset, where the symptoms arise earlier, there 
does seem to be a genetic component. So that is a very 
important finding that now offers a whole list of research 
areas that the scientists are dying to get into.
    What I would like to focus on is the area of brain repair, 
because that is the one where scientists stand ready right now 
to deliver, what I call, rescue, and all they need is the 
funding. In the same testimony, on that same page, I go into a 
little more detail about what is meant by that. Brain repair is 
not science fiction anymore. It is current reality. It is the 
exciting biomedical and biotechnical engine that could be 
delivering a rescue not just for Parkinson's Disease, but the 
whole array of neurological disorders, the neurodegenerative 
disorders and spinal cord injury, and the rest.
    What is encompassed within that phrase of brain repair is 
neuro growth factor, which is reviving dead cells and causing 
cell transplantation, which is doing so very well in the lab 
and in animals, and in some of the first clinical trials--
enable that to have enough cell survival, so that it is really 
an effective therapy. There are people in the world walking 
around with a history of Parkinson's Disease, but now symptom-
free and off medication from a cell transplant. There are very 
few of them, and the scientists have a lot of clues about how 
to make sure that the rest of us have that brain repair 
technique available to us as well, and they have a list of 
research areas they need to conduct to do that.
    It includes cell line development. When they get those 
perfected, then they have to have the cell lines, so that there 
is enough cell--there is a cell supply available for all of us 
who will be in line to get that repair.
    The scientists are waiting to do that. And I say, 
``waiting,'' because I attend their conferences, and they are 
thrilled with their results and extremely excited about the 
potential. But when they are not talking about the state of the 
science, during the breaks what they are talking about is their 
frustration. Their work is an exercise in frustration because 
they can get partway down the list of research that they want 
to conduct, and they can't complete the list because they don't 
have the money.
    What they tell us is that the NIH has done a terrific job 
of funding very fundamental science, the science that is 
important to do when an arena is very amorphous and they really 
haven't a clue of where the cure, the therapy, the rescue, is 
going to come from, but what it has not done as well is funding 
the application, so that they can take those basic foundational 
understandings and translate them into an application--in this 
case, brain repair. And they are frustrated they are not doing 
everything they can in those areas to deliver it.
    They are now putting numbers, for the first time--these are 
very conservative people, the researchers, the MD's, PhD's--
they have now, just in the last year, in my experience, started 
being willing to start talking in terms of two to three years 
for a therapy that would be available. That is not when they 
start a clinical trial; that is when it would be available. 
But, then, they always have a caveat--if the funding is 
available, and they say it is not.
    Why is this happening? It is clear at this point that the 
NIH is effectively blocking their capacity to do that work. As 
I said, they are interested in the foundational work, but they 
do not have the same interest in the application. At this point 
it is so very frustrating for Parkinson's because we now have 
been active in the research advocacy field for several years, 
and we have done everything we have been told to do. We have 
had our own authorization, the Udall Act. That has not 
accomplished an increase in funding to Parkinson's research.
    To our great frustration last year, Congressman Upton 
actually researched what the grants were that were being 
reported as Parkinson's funding, and had that information, with 
our help, sent out to these expert Parkinson's researchers 
around the country at the prestigious research institutions, 
and they looked at every abstract that was being counted for 
Parkinson's research, and it was even worse than we expected. 
About $34,000,000 was being spent actually in a focused way on 
Parkinson's research, and this is those applications; this 
isn't just clinical trials. It is the applied work they need to 
do.
    The rest of it was not. Forty percent wasn't even going to 
indirectly benefit Parkinson's. It wasn't even, what they call, 
related research. It was benefitting other diseases or 
foundational work that isn't necessary for Parkinson's at this 
point. I believe there was 23 percent that would have an 
indirect benefit, but that is far from the Udall Act 
contemplated, and it is far from what the researchers need. 
They are frustrated, and we are immensely frustrated at that, 
because we hoped, as I know this committee does, that with that 
authorization, and with the apparent scientific potential, that 
the NIH would take the lead, and it frustrates us enormously 
that they are not.
    Well, what is the consequence of that? Parkinson's has been 
a human tragedy for a long time, and I know this committee 
knows people with Parkinson's. Former Congressman Moe Udall is 
simply one example. And I know it is frustrating to watch 
people suffer and then go into that slow decline into oblivion 
that happens with Parkinson's--as with Congressman Udall, who 
had to spend eight years really invisible to the world, unable 
to function, before he finally died a few months ago. That has 
been a terrible tragedy, a human tragedy, and it continues. But 
the awful fact is that now it is becoming a terrible public 
policy disaster, because we don't need that tragedy to continue 
anymore.
    I am a pretty typical Parkinson's-afflicted person. There 
are various groups. For those of us who are afflicted, there 
are differences in the symptoms we experience and in the speed 
with which the disease takes over our lives. I am very 
fortunate that I have had at this point 12 years of pretty good 
functioning post-diagnosis, and I have dear friends who have 
not had that long.
    At this point, though, I have already given up the things I 
love, and I have pared back my personal life to support my 
work, but now it is eating into my functions. At this moment I 
am reasonably normal appearing; that was not true this morning; 
it was not true most of yesterday afternoon. At those points I 
can't work. So I am seeing myself in that slow slide into 
oblivion that I have seen others experience and am scared, and 
am frustrated, because it doesn't need to happen.
    The scientists say, ``Joan, this is going to be in time for 
you,'' and they have been saying that for a long time. But this 
always predicated on the money, and if the money isn't put to 
this exciting science, which could be delivering these 21st 
century technologies not just for Parkinson's, but for spinal 
cord injury and the rest, then that truly is a public policy 
disaster.
    I know this committee has enormous burdens and challenges, 
but this is one that I think is an opportunity at the same 
time. So I ask this committee to consider taking a leadership 
role in making sure that that disaster doesn't happen. Thank 
you very much.
    Mr. Porter. Ms. Samuelson, thank you very much for your 
testimony. This past year another Member of Congress, Lane 
Evans, was diagnosed with Parkinson's Disease, and, of course, 
Joe Skeen from New Mexico has Parkinson's Disease.
    We are going to do the best we can. We realize its 
importance, and the importance and possibilities of real 
breakthroughs in this area, and we want to do everything we can 
to provide the resources to get there. So we will do our best.
    Ms. Samuelson. Thank you, Mr. Chairman.
    Mr. Porter. Thank you.
    [The prepared statement of Joan Samuelson follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

                                           Tuesday, April 13, 1999.

                            DRUG DEPENDENCE


                                WITNESS

BILL R. MARTIN, PRESIDENT, COLLEGE ON PROBLEMS OF DRUG DEPENDENCE, 
    VIRGINIA COMMONWEALTH UNIVERSITY
    Mr. Porter. Our next witness is Dr. Billy R. Martin, Ph.D., 
president of the College on Problems of Drug Dependence of 
Virginia Commonwealth University. He is president of Virginia 
Commonwealth University--is that correct?
    Mr. Martin. No, I am president of the College on Problems 
of Drug Dependence.
    Mr. Porter. I am sorry, it wasn't clear to me.
    Mr. Martin. It wasn't very clear.
    Thank you, Chairman Porter, for allowing me to appear 
before your committee. Today I want to really speak to the 
issue of drug abuse, and I think that we can all agree that 
drug abuse is one of the major problems in our society today, 
affecting children all the way to adults.
    It exerts a tremendous price on us, not only socially, 
emotionally, but fiscally. It is estimated that the cost is 
more than $110,000,000,000 a year.
    There seems to be a paradox in science, and that is, the 
more we learn about our biological system, frequently, the more 
complicated it gets. We know today that drug abuse is a very 
complex disorder.
    I want to really address, I think, three specific issues. 
That is: What have we learned in the last 10 years? Where do we 
go from here? And how do we get there?
    As a scientist myself, I have devoted a career to marijuana 
dependence and nicotine addiction research. We have, I think, a 
clear vision of the complexity of drug dependence, and I think 
that we are getting a grasp on how to address those issues.
    Obviously, drug dependence involves social issues. It 
involves the pharmacological properties of the drug. Obviously, 
it involved a genetic aspect of individuals. So what we have 
learned in the last few years is the fact that there is a 
genetic aspect to drug dependence. We have learned a lot about 
how drugs affect the brain, and they have provided us avenues 
for developing new therapies. The third aspect is we have 
actually developed new medications and new strategies for 
treating drug dependence.
    So what we need to do today is to actually translate a lot 
of the knowledge that we have actually into clinical practice. 
We need to develop new prevention programs and to get those to 
the actual community that is involved. We know that the one 
shoe doesn't fit all anymore.
    We need to continue the basic research, as we understand 
the mechanisms of reward and what drugs do permanently to the 
brain. We know that taking certain drugs alters brain function 
for a very long period of time. So the way that we can get 
there, of course, is under your leadership, and we are very 
appreciative of the role that you have taken in funding 
biomedical research; that we are urging and supporting 
Congress' goal of doubling the NIH budget in five years. So 
that would require $94,000,000 to NIDA.
    In addition to that, we are requesting a $30,000,000 
allocation for a very exciting new program called Clinical 
Trials Network that the National Institute on Drug Abuse is 
undertaking, and that is modeled on the approach that the 
National Cancer Institute has taken, and that is, translating 
these new medications that we know work, these new approaches 
to drug dependence, translating that into the critical care 
community.
    So this $30,000,000 would allow for 10 new centers to be 
set up with multi-nodes, and it would actually reach thousands 
of new individuals. I think that is the real key, is to 
translate the knowledge that we currently have to drug 
dependence. It is a terrible problem, but there is a lot of 
excitement today, because we have learned so much in the last 
decade, that now I think we are very enthusiastic. I think we 
are going to be able to make a difference.
    So we applaud your efforts to assist us in this regard. 
Thank you. I would be glad to answer any questions.
    Mr. Porter. Dr. Martin, thank you very much for your 
testimony. We consider this an area of high priority, and we 
are going to do the best we possibly can to provide resources, 
both on the research side and on the prevention and treatment 
side as well.
    Mr. Martin. Okay, thank you very much.
    Mr. Porter. Thank you, sir.
    [The prepared statement of Bill Martin follows:]

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                                           Tuesday, April 13, 1999.

                  NIH FUNDING AND BIOMEDICAL RESEARCH


                                WITNESS

LINDA HICKE, ASSISTANT PROFESSOR, DEPARTMENT OF BIOCHEMISTRY, MOLECULAR 
    BIOLOGY, AND CELL BIOLOGY, NORTHWESTERN UNIVERSITY, ON BEHALF OF 
    THE ASSOCIATION OF AMERICAN UNIVERSITIES
    Mr. Porter. Dr. Linda Hicke, Ph.D., assistant professor, 
Department of Biochemistry, Molecular Biology, and Cell Biology 
at Northwestern University, testifying on behalf of the 
Association of American Universities.
    Welcome, Dr. Hicke.
    Ms. Hicke. Good afternoon, Mr. Chairman. I am Dr. Linda 
Hicke. I am an assistant professor in the Department of 
Biochemistry, Molecular Biology, and Cell Biology at 
Northwestern. I am here today to bring you the perspective of a 
newly-independent scientist whose research would not be 
possible without funding that I receive from the National 
Institutes of Health.
    I am also pleased to represent the Association of American 
Universities, which is an organization of 62 private and public 
universities in the United States and Canada. We are joined in 
this statement today by the American Council on Education, the 
National Association of State Universities and Land Grant 
Colleges, and the Council of Graduate Schools.
    Now this week you are going to hear from a number of 
witnesses that are advocating an increase in NIH funding, and I 
am here to speak on behalf of research institutions whose 
faculty of which I am a member translate NIH funding into 
findings that improve human health.
    Now in February, I was fortunate enough to be one of twelve 
NIH grantees who were awarded the Presidential Early Career 
Award for Scientists and Engineers. I was recognized with this 
award for the work I do on proteins that transmit information 
from the outside environment into a cell.
    Now the signals that cells receive from the outside 
environment control the growth and function of just about every 
cell in our body, and therefore, I anticipate that this 
research is going to provide critical insight to a number of 
important diseases such as cancer, diabetes, and hypertension.
    Now my fellow NIH awardees were recognized for a wide 
variety of achievements, and the diversity of our experiences 
demonstrates how biomedical research is increasingly 
interdisciplinary. Biomedical research now requires the use of 
sophisticated instrumentation, the use of complex model 
organisms and animal models for disease, and increasingly 
relies on bioinformatics.
    The institutions I represent here today, as well as my 
junior scientist colleagues, are enormously grateful to you and 
all the members of the subcommittee for your successful 
bipartisan effort to improve NIH funding by 15 percent last 
year. We hope that the subcommittee this year will be able to 
repeat that success with the Fiscal Year 2000 bill, as a second 
important step on the path to doubling NIH funding by the year 
2003.
    Now you have already cautioned us today about the 
difficulty of attaining that goal while adequately funding the 
other important programs in the bill, if the current 
discretionary caps are not adjusted by Congress. However, we 
hope that an agreement will be reached before the end of the 
year to invest some share of the anticipated budget surplus in 
basic research to support investments that are vital to the 
long-range health of the Nation.
    Now, as many members of this subcommittee have already 
indicated this year, the President's proposed budget increase 
of 2 percent for the NIH is very disappointing. To follow a 15 
percent increase last year with the proposed 2 percent increase 
subjects the research community to a rollercoaster effect, a 
point that even Secretary Shalala has been quick to acknowledge 
is probably not optimal.
    Now I am unusually fortunate because my presidential award 
has provided a six-year grant, which is a long enough time 
period to withstand year-to-year fluctuations in the 
availability of funding, and is also enough time for me to 
establish a research base to compete successfully for a second 
grant. But I am very concerned that the new proposed budget 
will send a negative signal to other junior scientists in the 
community. I have known in the past a number of my most 
talented, creative, and hard-working peers denied funding for 
research that they were doing that would be instrumental in 
diagnosing and preventing human disease. These dedicated 
scientists that I have known may rationally decide at some 
point to abandon science. I hope they don't, but that would be 
a waste of the wise and long-term investment this subcommittee 
has made over the years previous.
    Now, Mr. Chairman, I and scientists across the Nation 
applaud your vision and your stewardship of biomedical 
research. I and other scientists passionately believe that 
basic research is necessary to improve human health, and we 
stand behind that belief by spending many long hours, sometimes 
frustrating, in our laboratories.
    We are tremendously grateful to the vision of this 
committee, to the insight and the appreciation of the necessity 
for a long-term financial investment into basic research, and 
we hope that this committee can find the resources to continue 
to support that investment in the coming year.
    I thank you very much for the opportunity to express our 
views on biomedical research.
    Mr. Porter. Dr. Hicke, thank you for your testimony.
    Are you on the Evanston campus or the----
    Ms. Hicke. I am, yes.
    Mr. Porter [continuing]. Downtown campus? You're on the 
Evanston campus?
    Ms. Hicke. I am on the undergraduate campus in Evanston.
    Mr. Porter. What do you consider yourself to be, a 
microbiologist?
    Ms. Hicke. I am a cell biologist.
    Mr. Porter. A cell biologist? All right.
    Ms. Hicke. As you are familiar, the American Society of 
Cell Biology is----
    Mr. Porter. Yes.
    Ms. Hicke [continuing]. Extremely appreciative of your 
efforts in biomedical research.
    Mr. Porter. I am particularly focused on your statement 
that we need attract young researchers and keep them in the 
field.
    Ms. Hicke. Definitely.
    Mr. Porter. I am kind of interested, how did you get 
involved in this career? Where did this interest come from, and 
how did you pursue it?
    Ms. Hicke. I started out knowing that I wanted to do 
science as an undergraduate. I briefly switched to a softer 
science, wildlife management, but immediately switched back and 
received a degree in chemistry.
    Mr. Porter. And where was that from?
    Ms. Hicke. I received my undergraduate degree from Humboldt 
State University, and then I went to graduate school at the 
University of California at Berkeley, where I completely fell 
in love with science, with doing science, with the opportunity 
to discover new things that were contributing to human health, 
and that was obvious on research from bacteria all the way up 
to the tissue culture cells. And I have never looked back.
    Mr. Porter. NIH has historically received increases of 3 
percent in real terms every year throughout its 50-year 
history, and higher in some years than others----
    Ms. Hicke. Right.
    Mr. Porter [continuing]. But the average has been about 3 
percent in real terms. Just to play devil's advocate, why 
wouldn't that attract young people to come to the field and 
stay?
    Ms. Hicke. That increase in funding?
    Mr. Porter. That kind of a steady increase in funding and 
steady commitment by the Federal Government though both parties 
and administrations from both sides for a long, long time.
    Ms. Hicke. It has become increasingly more difficult, 
perhaps due to the nature of the NIH funding, for young 
researchers to attract a percentage of that funding. The high 
increase, the 15 percent increase, made available monies, I 
think, that allowed young scientists, who were just starting 
out, to give them the chance to start, instead of most of the 
money being funneled into very well-established labs with 
people who had been doing science for a long time, and who had 
an established track record. These very small increases in 
funding really do not provide enough money to allow new people 
starting out to get a chunk of that funding and get going on 
new creative research programs.
    Mr. Porter. Yes, I agree with that. There is so much good 
science out there that needs to be funded that we are not 
funding, that we want to provide the kinds of increases that 
will attract and keep young people interested in providing that 
brain power that we need to make progress.
    Well, we thank you very much for coming to testify. We are 
going to do the best we can to continue the commitment we made 
last year. It is going to be difficult, but I think in the end 
we are intending to get there.
    Ms. Hicke. Okay, thank you very much for your support, Mr. 
Chairman.
    Mr. Porter. Thank you.
    [The prepared statement of Linda Hicke follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

                                           Tuesday, April 13, 1999.

   PELL GRANTS, SSIG, SEOG, TRIO, WORK-STUDY, AND OTHER STUDENT AID 
                                PROGRAMS


     HISTORICALLY AND PREDOMINANTLY BLACK COLLEGES AND UNIVERSITIES


                                WITNESS

HENRY PONDER, PRESIDENT AND CEO, NATIONAL ASSOCIATION FOR EQUAL 
    OPPORTUNITY IN HIGHER EDUCATION
    Mr. Porter. The next witness is Henry Ponder, president and 
CEO of the National Association for Equal Opportunity in Higher 
Education.
    Mr. Ponder, welcome.
    Mr. Ponder. Mr. Chairman and distinguished members of the 
subcommittee, I am Henry Ponder, president and chief executive 
officer for the National Association for Equal Opportunity in 
Higher Education, also known as NAFEO. Thank you for allowing 
me to appear before you today. In the time that I have I would 
like to highlight several of NAFEO's priority programs.
    NAFEO is the national umbrella organization representing 
the Nation's 118 HBCUs. In total, our institutions enroll 
nearly 400,000 students and graduate almost 30,000 students 
yearly. Moreover, according to the President's Board of 
Advisors on HBCUs, these schools enroll about 18 percent of all 
African-American college students, yet graduate almost 40 
percent of African-Americans who complete college.
    Some of our distinguished graduates include 15 Members of 
the Congressional Black Caucus, Dr. Martin Luther King, Jr., 
Ronald McNair, Alexis Herman, Thurgood Marshall, Vernon Jordan, 
Jesse Jackson, Sr., Oprah Winfrey, Leotyne Price, and hundreds 
of other notable leaders.
    Even with these contributions, HBCUs are needed as much as 
ever in helping to close the college entrance gaps. According 
to the Department of Education's Digest on Education 
Statistics, of all major racial groups, African-American 
college enrollment is the lowest in the country. In 1995, only 
51.4 percent of African-American high school graduates enrolled 
in college. For whites, the figure was 62.6 percent, and for 
Hispanics, 53.8 percent.
    Consider, also, that the majority of African-American 
families have incomes that are less than $20,000 a year, the 
lowest of any major racial group. The 1995 and 1996 data 
released by the Department of Education suggests that almost 63 
percent of African-American students receive some form of 
student financial assistance. For those enrolled in HBCUs, the 
number is closer to 90 percent. For Whites, 47 percent received 
aid, and for Hispanics, approximately 54 percent of students 
receive some type of financial assistance.
    Because students that attend HBCUs rely so heavily on the 
Federal student financial assistance programs, NAFEO fully 
supports the increases proposed for Pell Grants, SSIG, SEOG, 
TRIO, work-study, and the other student aid programs. 
Additionally, Mr. Chairman, we have four other specific 
recommendations we would like your committee to consider and 
ultimately support. They are:
    Increased funding for Title III, part B; provide $4,000,000 
in new funding to support technical assistance; increase 
funding for Title III, part B, Section 326, and provide 
$8,000,000 to fund a HBCU Gear-Up demonstration.
    For Title III, part B, NAFEO seeks, asks for, $165,000,000 
to be provided, representing a $30.5 million increase above 
last year's level. According to the President's Advisory Board 
on HBCUs, the funding received in Fiscal Year 1997 by HBCUs 
from all Federal agencies amounted to 4 percent of all funding 
these agencies provided to higher education. This was down from 
5 percent two years earlier, and reflects very little change 
over a three-decade period. In Fiscal Year 1997, the funding 
level was 3 percent. Thus, the vast majority of the Federal 
funding to support student aid activities, Title III, part B 
plays a crucial role in building the capacity of HBCUs.
    The second component of NAFEO's capacity-building 
initiative seeks $4,000,000 to establish a technical assistance 
and resource center. Working in cooperation with the Department 
of Education, having such a center will enable HBCUs to better 
utilize the Federal resources made available to them and their 
students. Currently, there is no national center that can 
assist our institutions with the multiplicity of unique 
challenges and obstacles we have faced, and still must face.
    With regard to graduate assistance for Fiscal Year 2000, 
NAFEO asks that $40,000,000 be provided in higher education 
accounts, Title III, part B, section 326 programs, which is 
$10,000,000 more than the Fiscal Year 1999 amount.
    As you probably know, outside of the field of education, 
African-Americans are woefully underrepresented at the graduate 
and doctoral levels, particularly in the sciences. In 1996, 
African-Americans received the following number of doctorates 
in all those awarded to U.S. citizens in the following fields: 
mathematics, 8 of 646; computer science, 12 of 513; chemistry, 
45 of 1,461; physics, 15 of 1,097; engineering, 74 of 3,383, 
and biological sciences, 98 of 4,365. With increased support 
and within a 10-to-15-year period of time, HBCUs can be 
expected to at least double, and probably triple, the number of 
doctoral degrees currently produced in these fields.
    For Fiscal Year 2000, the administration recommends that 
$240,000,000 be appropriated for the Gear-Up initiative. This 
would double the amount provided in Fiscal Year 1999. Whatever 
funds are provided in Fiscal Year 2000, NAFEO asks that 
$8,000,000 be provided to support an HBCU demonstration 
project. Such a demonstration will greatly assist national 
efforts to better target and prepare African-American youth, 
starting with middle and high school students, for college 
admission.
    Mr. Chairman and other members of the committee, this 
concludes my testimony. Again, on behalf of the National 
Association of Equal Opportunity in Higher Education, I want to 
thank you for all you do in keeping the doors of opportunity 
open.
    I would be pleased to answer any questions.
    Mr. Porter. Is it ``Dr. Ponder'' or ``Mr. Ponder?''
    Mr. Ponder. Either is all right, but ``Dr.'' it is.
    Mr. Porter. Either is all right? ``Dr.'' is fine? All 
right.
    Dr. Ponder, as you know, we put at a high priority 
providing access and opportunity for education through the 
programs supported by the subcommittee. Again, we are going to 
do the best we possibly can to continue that commitment. It is 
not going to be easy with any of the programs, but we are going 
to do the best we can. We appreciate your coming to testify 
today.
    Mr. Ponder. Thank you very much, Mr. Chairman.
    Mr. Porter. Thank you so much.
    [The prepared statement of Henry Ponder follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. Next we have Sue Sebazco, registered nurse and 
Infection Control and Employee Health Director, Arlington 
Memorial Hospital, Arlington, Texas, and Julie Rish Mccord, 
infection control nurse, North Mississippi Medical Center, 
Tupelo, Mississippi, testifying on behalf of the Association 
for Professionals in Infection Control and Epidemiology.
    The Chair recognizes Mr. Wicker.
    Mr. Wicker. Well, I thank you, Mr. Chairman, for indulging 
me.
    First of all, let me just thank all of the witnesses for 
coming today. I realize that we only have a very short time 
allocated; that doesn't diminish the importance of your 
testimony, and we thank you for your patience. I realize that 
we are running late, and I won't contribute to that.
    But I want to thank you, also, Mr. Chairman, for indulging 
me for just a moment to introduce these two witnesses. Very 
important testimony today, Mr. Chairman, from Sue Sebazco, who 
is an infection control health director at Arlington Memorial 
Hospital, and my long-time friend, Julie Rish McCord, an 
infection control nurse for North Mississippi Medical Center. 
She and I both live in Tupelo, Mississippi, but we also happen 
to have grown up in Ponotoc, Mississippi, although she grew up 
a number of years after I did. [Laughter.]
    As a matter of fact, her father was my Sunday school 
teacher the day that Julie was born. So we go way back. 
[Laughter.]
    These two outstanding professionals, Mr. Chairman, are here 
to testify on behalf of literally thousands of professionals, 
healthcare providers, homeless shelters, who deal with the 
treatment of tuberculosis. They are making a very compelling 
case today about the Occupational Safety and Health 
Administration proposed rule with regard to facilities that 
treat TB. I think they make a very compelling case, and I hope 
our committee will listen closely.
    It may very well be that the Centers for Disease Control 
and healthcare professionals that deal with TB every day know a 
little more about how to make tuberculosis control facilities 
safe a little more than does OSHA. I would commend their 
testimony to you, and let's look toward the best and most 
qualified people to regulate the healthcare centers that treat 
TB.
    So I would at this point welcome Sue Sebazco, and then she 
will yield in a few moments to Julie.
                              ----------                              

                                           Tuesday, April 13, 1999.

       OCCUPATIONAL SAFETY AND HEALTH ADMINISTRATION TUBERCULOSIS


                               WITNESSES

SUE SEBAZCO, REGISTERED NURSE AND INFECTION CONTROL AND EMPLOYEE HEALTH 
    DIRECTOR, ARLINGTON MEMORIAL HOSPITAL, ARLINGTON, TEXAS, ON BEHALF 
    OF THE ASSOCIATION FOR PROFESSIONALS IN INFECTION CONTROL AND 
    EPIDEMIOLOGY
JULIE RISH McCORD, INFECTION CONTROL NURSE, NORTH MISSISSIPPI MEDICAL 
    CENTER, TUPELO, MISSISSIPPI, ON BEHALF OF THE ASSOCIATION FOR 
    PROFESSIONALS IN INFECTION CONTROL AND EPIDEMIOLOGY
    Ms. Sebazco. Thank you, Mr. Wicker, Mr. Porter.
    I am the Infection Control and Employee Health Director for 
Arlington Memorial Hospital in Arlington, Texas, and I am here 
today representing the Association for Professionals in 
Infection Control and Epidemiology, known as APIC. APIC is a 
nonprofit organization representing nearly 12,000 infection 
control professionals who work across the continuum of 
healthcare.
    APIC has long been a strong proponent of science-based 
programs designed to protect and enhance public health, such as 
those of the Centers for Disease Control and Prevention. We are 
extremely concerned, however, about regulation that is not 
science-based and is unnecessary and costly to implement. 
Specifically, I am referring to OSHA's proposed rule to prevent 
occupational exposure to tuberculosis.
    The Occupational Safety and Health Administration issued a 
proposed rule on October 17, 1997. It is clear that this rule 
will adversely affect facilities such as hospitals, nursing 
homes, clinics, homeless shelters, and will be virtually 
ineffective in reducing worker exposure to TB. We need 
congressional support in opposing this rule. Unless we can stop 
it in its tracks, the final rule will be issued in early 2000, 
according to OSHA officials.
    Now OSHA proposed this rule in response to a resurgence of 
TB in the United States that began in 1989 and has been under 
control, actually, since 1992. The CDC issued revised 
guidelines for the prevention and control of TB in 1994. These 
guidelines have been implemented as appropriate in the majority 
of the U.S. healthcare facilities today. They are effective; 
they are largely science-based and flexible for application 
according to a varying level of risk.
    Thanks to the public health efforts and the widespread 
adoption of the CDC guidelines, the incidence of TB in the 
United States has dropped to the lowest national level ever 
reported. This trend will continue as long as we maintain our 
focus on public health interventions rather than diverting our 
energies needlessly.
    This rule will place additional burdens on providers 
already facing decreasing Federal reimbursements and increasing 
demands of our managed care, while providing no added 
protection for healthcare workers. The rules on the inspection 
component will be costly for OSHA to implement, a needless 
waste of taxpayers' dollars.
    I want to thank you for the time, and I would like to now 
present Julie Rish McCord, who will continue on this issue.
    Ms. McCord. Thank you. Good afternoon. My name is Julie 
Rish McCord. I am an infection control nurse for North 
Mississippi Medical Center in Tupelo, Mississippi. I am here 
today as an infection control professional, but also as a 
healthcare worker and someone who has had direct experience 
with TB disease.
    You see, my mom, she was diagnosed with TB in the 1950's. 
In the years that followed, my family and I stood by her side 
as she suffered so many complications directly resulting from 
TB, which did contribute to her death in 1995. So I can tell 
you from firsthand experience that TB is a truly devastating 
disease.
    Obviously, we care very much about protecting healthcare 
workers, including ourselves, from TB. The intention behind 
this rule may be sincere, but it does not address the area of 
true risk. So I can tell you that TB is a public health issue, 
not a facility-specific issue. Healthcare workers are already 
protected from patients with known or suspected TB. In fact, 
the rate of TB in healthcare workers is lower than that within 
the general population.
    Also, TB disease in the healthcare worker is not 
necessarily occupationally-acquired. TB health workers may be 
foreign-born, and they may test positive for TB because they 
had a previous BCG vaccination in their country of origin, or 
they may have acquired the infection from family members or 
someone else in the community. This problem is especially acute 
in the immigrant population.
    TB is a public health issue because it is in all of our 
communities in Mississippi and nationwide, and it is going 
largely undetected. This is because carriers of TB disease are 
often not symptomatic, and they are unknowingly spreading this 
disease in the community. In fact, more than 70 percent of 
healthcare worker-acquired TB is from undiagnosed patients who 
show no symptoms. These cases are not readily prevented because 
TB is not even suspected.
    We need to strengthen our public health program, and this 
will allow us to more readily identify those who have TB, but 
show no symptoms, and prevent them from spreading TB disease. 
What does this entail? It entails a local-level screening, 
particularly of immigrants, and provisions of direct-observed 
therapy to TB-infected individuals and through contact, 
notification for active cases.
    In closing, I would like to make one final point that is 
very important. As someone who has lost such a dear family 
member--and Mr. Wicker knows how dear this family member was to 
me--to the complications of TB, if I believed for one moment 
that this rule would prevent people in Mississippi and across 
our Nation from contracting this terrible disease, I assure 
you, Mr. Porter and Mr. Wicker, I would not be sitting here 
before you today. The OSHA TB rule will offer no added 
protection for workers, and will be logistically and 
financially burdensome for all facilities nationwide.
    I thank you all for your attention to all our concerns.
    Mr. Porter. Well, let me thank you both for testifying. Let 
me ask a question. Have you had any input to OSHA's rule?
    Ms. Sebazco. Yes, sir, we did last year.
    Mr. Porter. The association did?
    Ms. Sebazco. Yes, the association testified before the OSHA 
hearings last year.
    Mr. Porter. And did their rule come out of some research by 
NIOSH or some other agency? Where did the rule come from?
    Ms. Sebazco. I am not clear on where the rule actually 
originated. I don't know exactly where it started, but probably 
it came from the CDC's guidelines and then pressure on OSHA to, 
in turn, come back and regulate the healthcare industry so that 
we would have a standard in place to protect our workers.
    Mr. Porter. Well, not having heard the other side of it, I 
am going to reserve judgment, obviously, but I very much 
appreciate both of your testifying. I suspect we are going to 
have a Wicker amendment offered to our bill dealing with this, 
and I will try to educate myself and the other members of the 
subcommittee before we get to that point, and see if we can do 
the right thing.
    Mr. Wicker. Perhaps the Porter-Wicker amendment. 
[Laughter.]
    It might carry a little more clout there. [Laughter.]
    Mr. Porter. Well, we will need a little more education 
before we can get to that point.
    Thank you both for coming to testify.
    Ms. Sebazco. Thank you. We appreciate it.
    Ms. McCord. Thank you.
    [The prepared statements of Sue Sebazco and Julie McCord 
follow:]

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                                           Tuesday, April 13, 1999.

     OFFICE OF RESEARCH AND MINORITY HEALTH AT NIH ANIMAL RESEARCH 
                               FACILITIES


                                WITNESS

RONNY B. LANCASTER, SENIOR VICE PRESIDENT FOR MANAGEMENT AND POLICY, 
    MOREHOUSE SCHOOL OF MEDICINE, ON BEHALF OF THE ASSOCIATION OF 
    MINORITY HEALTH PROFESSIONS SCHOOLS
    Mr. Porter. Our next witness is Ronny B. Lancaster, senior 
vice president for management and policy, representing the 
Association of Minority Health Professions Schools. He is the 
senior vice president for management and policy at the 
Morehouse School of Medicine. I am sorry, I didn't have that 
before me.
    Ronny, it is good to see you. You have testified a number 
of times before our subcommittee. We are delighted always to 
have you here again. Why don't you proceed?
    Mr. Lancaster. Thank you, Mr. Chairman. Good afternoon, and 
it is an honor to appear before you and this subcommittee.
    I am Ronny B. Lancaster, senior vice president for 
management and policy at the Morehouse School of Medicine in 
Atlanta. I appear this afternoon, as you have stated, Mr. 
Chairman, as president of the Association of Minority Health 
Professions School. We are an association of 12 health 
professions schools whose members collectively have trained 
over half of the Nation's black physicians, pharmacists, 
dentists, and veterinarians in our country.
    I have submitted testimony for the record, but, with your 
permission, Mr. Chairman, will summarize it briefly. Before 
beginning, I would like to make two brief points.
    First, I would like to thank this subcommittee and 
recognize your leadership, in particular, Mr. Chairman, for the 
long history of outstanding support this body has provided our 
institutions individually and collectively. This support, 
without exaggeration, has been the difference between the doors 
of our institutions remaining open.
    Second, I would like to state for the record how fortunate 
our institutions feel to have had Mr. Louis Stokes serve on 
this subcommittee with distinction for so many years, and how 
pleased we are that Mr. Jesse Jackson, Jr., has been asked to 
serve on this important committee. We welcome the appointment 
of Mr. Jackson, and we also look forward to the opportunity to 
work with him, as we have other members of this subcommittee, 
especially Mr. Stokes, to continue to improve the health status 
of poor and minority citizens.
    Now with respect to my testimony, Mr. Chairman, we urge 
support for all of the programs we have mentioned. These are, 
as I have stated, important to the survival of our 
institutions. However, very briefly, I would like to mention 
two points.
    First, we support the recommendation offered by Dr. Louis 
Sullivan, his testimony in the Senate before Chairman Specter, 
to elevate the Office of Research and Minority Health at NIH to 
center status. This change would enable the new center to make 
grants, after review, directly to support institutions engaged 
in research to improve minority health, and also to work with 
the NIH Director and institute directors to develop a strategic 
plan to improve NIH's overall response to health status 
disparities.
    As you know, Mr. Chairman, disparities in minority health 
have existed for decades. Elevating this office to center 
status, together with other initiatives, would be an important 
step toward beginning finally to closing the stubborn and 
devastating health gap which deprives so many Americans of 
living full lives.
    Second and finally, our institutions have identified this 
year as their principal legislative priority upgrading animal 
research facilities to obtain appropriate accreditation. 
Upgrading these facilities and obtaining accreditation would 
not only measurably improve our overall research capacity, but 
also enable these institutions to compete successfully for RO1 
grants. The amount of money that we are proposing, Mr. 
Chairman, is small, but the initiative is important.
    In closing, I would like to say, again, that it has been a 
privilege to appear before you and this subcommittee. Thank you 
for your long history of support to our institutions, to our 
students, and to the health-challenged citizens we serve.
    And, finally, thank you for the opportunity to present the 
views of our association this afternoon.
    Mr. Porter. Ronny, thank you very much for coming to appear 
and to represent the association before us. We know the 
importance of the priority.
    We also would like to ask you to send our deep respect and 
regards to Dr. Sullivan, who served our country so well as the 
Secretary of Health and Human Services under the Bush 
administration, and we are delighted you could come to 
represent the association and to represent Morehouse today.
    Mr. Lancaster. Thank you, Mr. Chairman. It is my pleasure 
to be here, and it would be my great pleasure to extend your 
regards to Dr. Sullivan, as he has asked, not coincidentally, 
to extend his to you.
    Mr. Porter. Wonderful.
    Mr. Lancaster. Thank you.
    Mr. Porter. Thank you, Ronny.
    [The prepared statement of Ronny Lancaster follows:]

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                                           Tuesday, April 13, 1999.

                  SUDDEN INFANT DEATH SYNDROME FUNDING


                                WITNESS

JUDY KIMMITT RAINEY, ON BEHALF OF THE SUDDEN INFANT DEATH SYNDROME 
    ALLIANCE
    Mr. Porter. Our next witness is Judy Kimmitt Rainey, 
representing the Sudden Infant Death Syndrome Alliance.
    Ms. Rainey, welcome.
    Ms. Rainey. Thank you. Mr. Chairman and members of the 
subcommittee, thank you for allowing me to testify on behalf of 
the SIDS Alliance regarding funding of Sudden Infant Death 
Syndrome.
    My name is Judy Rainey. This is my husband, Terry, and my 
daughter, Sarah, who are with me today, slightly unexpectedly, 
but gladly.
    For the past 22 years, I have worked at the United States 
Senate; for the last 10 years, in the personal staff of Senator 
Bob Kerrey.
    On March 11, 1996, my husband and I were blessed with the 
birth of our beautiful son, Joseph Kimmit Rainey. We had been 
trying for 10 years to have a third child, and one month before 
my 40th birthday I discovered I was pregnant. Our two older 
children, Brian and Mary, who were teenagers by that time, were 
thrilled at the thought of a new baby in our family.
    Twelve weeks after Joe was born I returned to work. I felt 
so fortunate to have found a highly-recommended child care 
provider who was on Constitution Avenue, right across the 
street from the Hart Building, where I worked. She called me 
every day around lunchtime to tell me when Joe was up from his 
morning nap, so I could run across the street and nurse him.
    I thought when I received that call on November 15 at 1:10 
p.m. that she was going to tell me, ``Come, Mama. Your baby is 
awake.'' But instead she said, ``Please come right away. Your 
son is sick.'' Those words were the beginning of my nightmare.
    I thought Joe might have been throwing up or had a fever, 
but something in her voice told me I had to get there quickly. 
I ran out of my office and arrived at her home in less than 
five minutes. I remember when I arrived the babysitter was 
standing at the front door, holding Joe in her arms, his head 
resting on her shoulder. He looked like he was sleeping 
peacefully, and I was relieved that he wasn't crying.
    But when she handed Joe to me, his head fell back and he 
was limp in my arms. I screamed, ``Oh, no. Oh, no,'' and 
immediately ran to the phone and dialed 911.
    The next few hours were a blur to me--giving Joe CPR with 
the help of the 911 operator, the arrival of the paramedics, 
the ride to D.C. General Hospital in a police car, frantically 
trying to track down my husband at his office in Virginia, 
being questioned by a D.C. homicide detective, and just waiting 
and waiting in a small, bare, windowless room at D.C. General, 
until a group of four doctors and nurses came into the room and 
said, ``We did all we could, but we could not save your son.''
    My husband, Terry, said it is the longest walk he has ever 
taken, was to walk down the corridor at the hospital to get to 
the room where our dead son lay. We were told, ``Don't touch 
him. He still has a lot of tubes in him.''
    We looked down at our precious son, lying on his back, with 
a sheet across him up to his chest, hiding all the medical 
devices still left in him, and kissed his cold, bare forehead 
and said goodbye. We walked out of D.C. General in shock and 
drove home to tell our two older children that their baby 
brother was dead.
    The day before we buried our son, I received a call from 
the D.C. homicide detective who was at the scene. He informed 
us that the preliminary findings on Joe's death were 
inconclusive. The medical examiner's office could not figure 
out what killed our son. When I told that to my son's 
pediatrician, she said that it might turn out that Joe died of 
SIDS, or Sudden Infant Death Syndrome.
    At that time I knew virtually nothing about SIDS. I 
immediately went on the Internet and began to learn everything 
I could about what might have killed my son. I learned that 
SIDS was a diagnosis of exclusion. It is the death of an 
apparently healthy infant that remains unexplained even after 
an autopsy has been performed, medical history has been 
reviewed, and a thorough death scene investigation has been 
done.
    SIDS is a frightening disease that knows no geographic, 
economic, or cultural boundaries. It is the leading cause of 
death among infants age one month to one year. It is not 
preventable or predictable, but certain risk factors have now 
been identified, such as sleep position, overheating, and 
smoking.
    Seven years ago, there was little you could tell a parent 
to help them lower the risk of their infants dying from SIDS. 
We have come a long way in just those seven years. The U.S. 
Back to Sleep Campaign, begun in 1992 and led by the National 
Institute of Child Health and Human Development, has resulted 
in a 43 percent decrease in SIDS, the highest reduction in 
infant mortality in 20 years. The simple act of placing your 
infant on their back to sleep, instead of on their stomach, has 
brought the number of deaths from SIDS down from approximately 
4,900 in 1992 to 2,700 in 1997.
    Unfortunately, this message is still not getting out to 
some populations, specifically, lower-income and some minority 
populations, and to child care providers, grandparents, and 
others who take care of infants. We must strengthen our back-
to-sleep message and reach these populations, until we are sure 
that babies are routinely placed on their back to sleep.
    Who here would think of putting an infant in a car without 
using an infant car seat? And, yet, I would guess that a number 
of people here would place a baby on their stomach to sleep, 
either out of ignorance or because that is the way I did it 
when my children were young, and they didn't die. Old habits 
and customs are very hard to break, but we cannot let up on our 
campaign to educate all Americans about back-to-sleep.
    After decades of scientific study, we are beginning to make 
real progress in reducing the number of babies dying of SIDS, 
and are just starting to unravel the mystery. But our work is 
far from over. On behalf of Joe and all other SIDS babies, I 
urge you to support SIDS research and education by funding the 
NICHD and NIH at a 15 percent increase over the Fiscal Year 
1999 budget. As this subcommittee works toward doubling funding 
for the National Institutes of Health by Fiscal Year 2003, we 
believe that it is reasonable to anticipate a doubling of the 
funding commitment to SIDS research through NICHD. We also 
request that Congress continue to encourage MCHB and CDC to 
move forward with their initiatives to help SIDS families by 
expanding the availability of services and promoting 
standardized, thorough, and compassionate death scene 
investigations.
    I thank you for your time and support.
    Mr. Porter. Ms. Rainey, thank you for your testimony.
    We have a 4-month-old grandchild----
    Ms. Rainey. Congratulations.
    Mr. Porter [continuing]. And I worry every day that the 
same thing could happen.
    Also, I have been talking about this for a long time, but I 
really would like to see if we can do something about it, but 
it seems to me that a lot of this is a question of education. 
It seems to me that CDC ought to be able to go on television, 
where you can reach young parents often, with some kind of a 
public service message just to tell them what they should do. A 
lot of people, as you said in your testimony, just don't know. 
I think we do a very bad job of getting out to the American 
people a lot of the knowledge that has been developed through 
research and is known by health professionals, but is not known 
generally by the population. If we could get that out, it seems 
to me that a lot of progress could be made in terms of 
preventing preventable deaths.
    Obviously, we don't know in every case what causes Sudden 
Infant Death Syndrome, but just the act of laying a baby on its 
back is going to prevent a large proportion of that; we know 
that through the research that has been done.
    I think it is wonderful that you came here to testify and 
tell us your story----
    Ms. Rainey. Thank you.
    Mr. Porter [continuing]. And what happened in your family. 
I wish we could do something to bring your son back, but at 
least maybe we can do something to prevent SIDS from happening 
to others in the future. Thank you for coming to testify.
    Ms. Rainey. Thank you very much.
    Mr. Porter. Thank you.
    [The prepared statement of Judy Rainey follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

                                           Tuesday, April 13, 1999.

                         NATIONAL EYE INSTITUTE


                                WITNESS

WALTER J. STARK, M.D., CHAIRMAN, AAO COMMITTEE FOR OPHTHALMIC 
    TECHNOLOGY DEVELOPMENT, ON BEHALF OF THE AMERICAN ACADEMY OF 
    OPHTHALMOLOGY
    Mr. Porter. Our next witness is Dr. Walter J. Stark, M.D., 
chairman of the AAO Committee for Ophthalmic Technology 
Development, testifying on behalf of the American Academy of 
Ophthalmology.
    Dr. Stark, you are a professor of ophthalmology at the 
Johns Hopkins School of Medicine; is that correct?
    Dr. Stark. Yes, sir.
    Mr. Porter. Thank you very much for coming to testify.
    Dr. Stark. Thank you, Chairman Porter. It is my pleasure to 
be here.
    I am here representing the American Academy of 
Ophthalmology whose mission is to support basic clinical and 
applied research that strengthens our ability to provide the 
best care for our patients. I respectfully request that the 
academy's written statement be included in the record.
    Americans fear blindness more than any other disability. 
This is surely the reason for the public support for increasing 
Federal research funds for the National Eye Institute. Your 
subcommittee recognizes the importance of investing in health 
research, and I want to convey my thanks to your work last year 
to secure a 15 percent budget increase for the National 
Institutes of Health. This was a crucial first step toward 
achieving the bipartisan goal of doubling the NIH budget over 
five years and ensuring that the United States remains the 
world leader in promoting and protecting public health.
    Mr. Chairman, the American Academy of Ophthalmology is 
concerned about the virtual halt in the administration's 
momentum toward doubling the NIH budget. The proposal Fiscal 
Year 2000 funding level appears inconsistent with research 
funding goals established last year.
    Of particular concern is the proposed budget increase for 
the National Eye Institute, just 2.4 percent over Fiscal Year 
1999 levels. It is worth noting that in recent years the NEI's 
percentage share of the overall NIH budget has decreased. This 
is a disturbing trend.
    With the support that you have given, we have made 
significant advances in relieving the pain and suffering in 
many eye and blinding disorders. I provided a handout to your 
staff today that highlights just a few of the benefits of NEI-
supported research.
    Diabetes, for example, is the No. 1 cause of blindness in 
working-age adults. NEI-supported studies demonstrate that 
blindness from diabetes can be prevented in most patients by 
laser therapy. It has been estimated that laser therapy for 
diabetic retinopathy saves up to $1.6 billion per year. Mr. 
Chairman, the academy is pleased that last year your effort to 
increase research funding for diabetes was successful. However, 
the academy is concerned that the NEI received only $2,000,000 
of first-year allocation of $30,000,000 last year.It is only 
common sense and cost-effective to invest resources in preventing 
blindness and maintaining the productivity among our working Americans.
    Age-related macular degeneration is a leading cause of 
vision loss in older Americans, including some Congressmen, 
affecting more than 10 percent of Americans over the age of 60. 
Annually, 100,000 eyes go blind from age-related macular 
degeneration, and the problem is getting worse as the 
population ages. NEI is engaged in several basic and clinical 
investigations that will, hopefully, lead to the prevention and 
a cure for all forms of this disease, which robs many patients 
of their independence in the retiring years.
    Glaucoma is a major cause of preventable blindness in aging 
adults and the single most common cause of irreversible 
blindness among African-Americans. Glaucoma research sponsored 
by the National Eye Institute has led to the development of 
three new drug therapies for glaucoma treatment during the last 
five years and the identification of a gene that causes 
glaucoma. More support is needed to combat this, the most 
common disease for which a Medicare patient sees an eye doctor.
    The lower part of the handout details the estimated cost 
savings from the National Eye Institute's supported research to 
be approximately $1.9 billion from just the five diseases 
listed. This subcommittee has made a great investment in eye 
research.
    Mr. Chairman, the American Academy of Ophthalmology 
strongly recommends that the $456.1 million be directed to 
research conducted by the National Eye Institute on eye and 
vision disorders. This represents an increase of nearly 15 
percent over NEI's Fiscal Year 1999 funding levels.
    As the baby-boomers age, it is more critical that 
scientific research be targeted toward finding effective 
treatment and cures, but, more importantly, the prevention of 
blinding and disabling eye diseases. The NEI-supported 
investigations being carried out today give us a better 
understanding of the molecular and the genetic basis for many 
eye diseases which will open new avenues for the design of 
treatment strategies based on gene therapy, transplantation, 
and new pharmacological interventions.
    If we bypass the opportunity to adequately fund eye and 
vision research, we can only expect that the aging population, 
incapacitated by vision loss, to require great reliance on 
Federal support and to have an inferior quality of life.
    I want to thank you for allowing me to appear before you 
today, and I will be happy to answer any questions.
    Mr. Porter. Dr. Stark, thank you for your testimony.
    Obviously, we are very supportive and very pleased with the 
work that Dr. Copferr has done at NEI, and I always find, when 
he comes to testify, there are fascinating, new developments 
that they have worked on. It is a real education for us.
    I also agree with you that there are great cost savings to 
be experienced from an investment in biomedical research. I 
happened to be on a panel earlier this year with Robert 
Rieschauer, who was the Director of the Congressional Budget 
Office for a number of years and a very respected economist, 
who claimed to me that there are no cost savings from any 
investment in biomedical research because people simply live 
longer and get other disease for which they must be treated. 
What is your answer to that contention?
    Dr. Stark. Well, I strongly disagree; the investment, as I 
have illustrated in the handout, keeps Americans in a more 
productive state during their years before retirement, and then 
reduces the cost of medical care as they get older. For 
example, people may live a longer period of time with diabetes, 
but if they are blind, the government is going to have to take 
care of a high percentage of those patients. So you have made 
an excellent investment in reducing blindness in many of these 
patients.
    Mr. Porter. Luckily, on this same panel was Dr. Phillip 
Lee, who was the Assistant Secretary for Health at Health and 
Human Services, and he corrected Dr. Rieschauer's contention. 
Unfortunately, Dr. Rieschauer had already left by this point. 
So we are still in this debate.
    But I very much agree with you, obviously, and appreciate 
your coming to testify today, and we will do the best that we 
possibly can.
    Dr. Stark. Thank you. Dr. Goldberg, formerly of the 
University of Illinois, a friend of yours and constituent, now 
chairman of the Wilmer Institute----
    Mr. Porter. Right.
    Dr. Stark [continuing]. Wants to personally thank you also 
for your efforts in this regard.
    Mr. Porter. Thank you for saying that.
    [The prepared statement of Walter Stark, M.D. follows:]

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                                           Tuesday, April 13, 1999.

                       NATIONAL CANCER INSTITUTE


                                WITNESS

RICHARD BOXER, M.D., MEMBER, BOARD OF DIRECTORS, LYMPHOMA RESEARCH 
    FOUNDATION OF AMERICA
    Mr. Porter. Our next witness is Dr. Richard Boxer, M.D., a 
member of the board of directors of the Lymphoma Research 
Foundation of America.
    Welcome, Dr. Boxer.
    Dr. Boxer. Thank you very much. Chairman Porter, it is an 
honor to testify before you, representing the Lymphoma Research 
Foundation of America, and more importantly, the over 600,000 
American men, women, and children who are living with the 
diagnosis of lymphoid cancers, which include Hodgkins and non-
Hodgkins lymphoma, chronic and acute lymphocytic leukemias; and 
the millions who have died of these diseases or will be 
diagnosed in the future.
    We believe it is critical for this committee to support the 
basic research and clinical trials that will one day allow us 
to speak about lymphomas in the past tense. Your support will 
place this dreaded disease in the history books alongside 
polio, smallpox, and other conquered health problems.
    I am on the board of directors of the Lymphoma Research 
Foundation of America, the Nation's largest organization 
dedicated to providing comprehensive information to both 
support the patients who have lymphoma and their families and 
friends. By the summer of 1999, 72 research projects, totaling 
nearly $2.5 million, will be funded by our organization.
    I did not choose to come here today. My family and I would 
have done anything to avoid me testifying about lymphomas. But 
the disease chose me to be here. I am one of the fortunate 
victims of this disease, for I have been cured. I was diagnosed 
with non-Hodgkin's lymphoma in November of 1995 and underwent 
the removal of my spleen, a portion of my pancreas, seven 
courses of chemotherapy, and a bone marrow transplant, in order 
to successfully treat my cancer. It has taken a tremendous toll 
on my life and my family's life, but it has taught me about the 
other side of healthcare, for I have been treating as a doctor 
patients with cancer for the past 25 years.
    When I developed cancer, suddenly I was wearing the 
mortifying fear and anguish that I had seen wrap my patients' 
faces. I was now a statistic and not a provider. I lived 
because of those patients who came before me and the research 
performed by scientists. What I learned, I now share with my 
patients and my colleagues, with the intent that I have gone 
through this experience for a reason.
    The statistics about lymphomas are staggering. The 
incidence of lymphoma is rising faster than any other cancer in 
America except one. More than 600,000 Americans are living with 
the diagnosis of lymphoma. Sixty percent of all childhood 
malignancies are lymphomas or related diseases such as 
leukemias.
    Approximately 88,600 Americans will be stricken with 
lymphoma cancers this year. The incidence of non-Hodgkins 
lymphoma has risen by 85 percent since the 1970's. And although 
lymphoid cancers represent 7.3 percent of all cancers diagnosed 
and 8.8 percent of all cancer deaths, the lymphoma research 
accounts for just 2.4 percent of the NCI budget.
    I carry a message of hope, for I am the embodiment of the 
hopes and dreams of anyone who has had a lymphoma, for I have 
been cured due to the art and science of medical research, in 
large part funded through the generosity of the American people 
and because of the leadership of Congress.
    I carry a message of fear, for I was struck down, but not 
out, by an insidious disease, and it could happen to anyone. It 
could happen to you or to one of your loved ones. There is also 
the fear of the unknown. What effects will the massive 
chemotherapy that is debilitating visit upon a cured patient in 
the future?
    I carry a message of urgency, for there will be another 
88,600 Americans who will be diagnosed with lymphoid cancers in 
1999, and half will die of their disease. These chilling 
statistics will continue until the answer is found.
    You have the power and responsibility to provide the 
courage and leadership to increase the funding that will 
eventually lead to the discovery of a cure and the prevention 
of lymphoid cancers. Last year Congress took the courageous 
step of declaring its desire to double the NIH budget by 2003. 
The 15 percent downpayment that was appropriated last year sent 
a significant message to the Nation, and particularly the 
research community, that Congress was committed to the 
eradication of cancer.
    Specifically, the Lymphoma Research Foundation of America 
requests that the subcommittee include in its Fiscal Year 2000 
committee report language calling for an increase in the 
appropriations for lymphoma research at the NCI; promote new 
and innovative research models based upon the collaborative 
methods to maximize current lymphoma research funded at the 
NCI; promote research into the incurable low-grade and 
aggressive lymphomas, and coordinate research with the National 
Institutes of Environmental Health Sciences and the CDC, to 
explore the environmental and other factors responsible for 
lymphomas.
    Just as the courageous American soldiers fought in the 
front lines of the battlefield to preserve our freedoms from 
assault by a foreign enemy, and the scientists labor to give 
them the most modern weapons with which to fight, all funded by 
past Appropriations Committees, the front-line doctors and 
research scientists rely upon the members of this subcommittee 
to fund the battle that has claimed more lives than all the 
wars this country has ever fought. The enemy is different, but 
is no less deadly. When will we join together, Democrats and 
Republicans, and declare that enough is enough? When will our 
priorities change to increase our focus on the most basic, 
fundamental needs of all Americans: the freedom from cancer?
    In the name of tens of thousands of American women, men, 
and children who will be stricken with lymphoid cancers, strike 
back. Strike a blow against this killer. Increase the funding 
of the NIH, and specifically the NCI, and express concern over 
the rapidly-rising incidence of lymphomas. Thank you.
    Mr. Porter. Dr. Boxer, you anticipated my question right at 
the end of your testimony, because I was going to ask you 
whether you thought environmental factors played a significant 
role in lymphoid cancers. Obviously, you do, or you wouldn't be 
suggesting research at NIEHS and CDC. My own sense of it is the 
same, that this is a place where we really need to put 
additional resources, so that we can discover the basis of this 
disease.
    The increase in the last two or three decades has been 
absolutely astounding, and it would lead one to believe that 
there is environmental cause for it.
    Dr. Boxer. I believe you are right, sir.
    Mr. Porter. We need to find that out.
    Dr. Boxer. Three people in a row in my neighborhood, 
including myself, all developed lymphomas--three men in their 
forties. So it could be a cluster; it could be a coincidence. 
But, on the other hand, it is just one example of many examples 
around the country where there is the feeling that the 
environment has caused us to become ill.
    Mr. Porter. I lost a very good friend a couple of years 
back from lymphoma, a man who was a classmate of mine at 
Northwestern University, a fraternity brother also, and so I 
know a little bit about the devastating effects of the disease. 
Obviously, we want to do whatever we can to provide help for 
research, both through CDC and NIH. We will do our best.
    Dr. Boxer. Thank you, Mr. Chairman and other members. Thank 
you.
    Mr. Porter. Thank you, Dr. Boxer.
    [The prepared statement of Richard Boxer, M.D., follows:]

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                                           Tuesday, April 13, 1999.

                            MEDICAL RESEARCH


                                WITNESS

DAVID P. BECK, PRESIDENT AND CEO, CORIELL INSTITUTE FOR MEDICAL 
    RESEARCH, ON BEHALF OF THE ASSOCIATION OF INDEPENDENT RESEARCH 
    INSTITUTES
    Mr. Porter. Our next witness is Dr. David P. Beck, 
president and CEO, Coriell Institute for Medical Research, 
testifying on behalf of the Association of Independent Research 
Institutes.
    Dr. Beck, it is good to see you again.
    Mr. Beck. Good afternoon, Chairman Porter, members of the 
committee. Thank you very much for the opportunity to talk with 
you today.
    I am testifying before you on behalf of the Association of 
Independent Research Institutes, also known as AIRI. I serve as 
chairman of the Government Affairs Committee, and I am 
immediate past president of AIRI. I thank you for this 
opportunity to comment once again on the appropriation for the 
National Institutes of Health.
    AIRI is a national organization of 87 independent, not-for-
profit research institutes that perform basic and clinical 
research in the biomedical and behavioral sciences. AIRI 
members' primary purpose is the conduct of biomedical research, 
and we know, as do you, that just as the medical care we 
receive today is based on research done 10, 15, 20 years ago, 
or more, our children and our grandchildren will have the next 
generation of medical care only if we invest in new research 
today.
    Our members include the Foundation of Blood Research in 
Maine, the Southwest Foundation for Medical Research in Texas, 
and Hutchinson Cancer Research Center in Washington, just to 
name a few members.
    Mr. Chairman, we thank you for your past support and we ask 
you again to demonstrate your support for the work of NIH by 
providing a 15 percent increase in funding in the Fiscal Year 
2000, as called for by the Ad Hoc Group for Medical Research 
Funding. Such an increase is an essential step toward realizing 
the goal of doubling the NIH budget by Fiscal Year 2003.
    As a result of your support over the past decade, an ever-
expanding base of scientific knowledge about health and disease 
is being developed, and that has already begun to revolutionize 
both our concepts of scientific inquiry and the practice of 
medicine.
    I want to stress the importance of sustained multi-year 
growth for the biomedical enterprise. Volatility and dramatic 
fluctuations in support levels can be as harmful to the 
enterprise as inadequate funding and growth rates. This 
sustained growth is needed to maintain vital research projects 
in all aspects of biomedical science, but it is also necessary 
in order to recruit the best and brightest of the next 
generation of researchers to do basic biomedical research.
    At AIRI, our researchers have had a success rate 
significantly higher than the average of all competing research 
grant applications. We know what has been accomplished with NIH 
support, and we know how much more can be done with additional 
NIH funding. Here are just a few examples of the biomedical and 
behavioral sciences work in which AIRI institutes, with 
critical support from the National Institutes of Health, are 
taking the lead.
    At the Oklahoma Medical Research Foundation in Oklahoma 
City, Oklahoma, researchers have discovered protein C, a 
critical component of the blood-clotting system. This work has 
led to a full-fledged clinical trial for treating patients with 
septic shock. Early results have been so encouraging that 
trials have been accelerated.
    At the Gladstone Institute for Virology and Immunology in 
San Francisco, California, researchers have discovered that HIV 
infection both diminishes the production of critical white 
cells in the blood and accelerates their destruction. This new 
finding suggests potential new approaches to halting the 
development of immunodeficiency in HIV infection by blocking 
the effects of the virus and T-cell production.
    At the Whitehead Institute for Biomedical Research in 
Cambridge, Massachusetts, scientists have identified how key 
components of the cells' gene-reading machinery coordinate the 
activity of thousands of genes throughout the genome. This 
genome-control map represents a major step forward in 
dissecting the circuitry by which genes are turned on and 
offduring normal and abnormal growth and development. Developing such 
maps for humans could be a major breakthrough in our understanding of 
basic disease processes and for the development of new drugs.
    At the Smith-Kettlewell Eye Institute in San Francisco, 
California, scientists have developed a method for electrical 
diagnosis of blinding eye diseases, a method which evaluates 
hundreds of regions of the retina in the time it used to take 
to evaluate just one. This technique can enhance early 
detection of many eye diseases, and may help prevent the loss 
of sight in many older patients.
    At my own institute, the Coriell Institute for Medical 
Research in Camden, New Jersey, scientists are examining the 
genes in single breast cancer cells and comparing them to 
normal cells in the same pathological specimen, to learn what 
genetic defects might be responsible for this terrible disease. 
We are beginning to see the true range of genetic variations 
that can occur in breast cancer.
    Mr. Chairman, I hope you will be able to support the 15 
percent increase in funding for the NIH to encourage more of 
this pioneering work. I want to close by expressing my 
appreciation for the opportunity to express AIRI's views to you 
today, and I would be happy to answer any questions you may 
have.
    Mr. Porter. Dr. Beck, I think you were here when I gave my 
little sermonette about the budgetary circumstances of this 
year. We will do our best, obviously. We have set ourselves the 
same goal that you support, and we, I think, are going to find 
some bumps along the highway this year, but we are going to do 
the best we can to get there.
    Mr. Beck. We appreciate your vision and your leadership.
    Mr. Porter. Thank you so much for testifying.
    Mr. Beck. Thank you.
    [The prepared statement of David Beck, Ph.D., follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. Our next witness is Dan DiStefano, the project 
creator of WWW.CONGRESSFORKIDS.COM, testifying as a private 
citizen. He is accompanied by our colleague James Rogan.
    Gentlemen, it is good to have you here.
    Mr. Rogan. Mr. Chairman, thank you. I thank you both in 
your capacity as chairman, and on behalf of the entire 
subcommittee, I thank you for having this hearing, and for 
allowing Dan and I to be here with you today to describe an 
innovative program that could bring the Congress to our youth 
around the country.
    Mr. Dan DiStefano, the gentleman beside me, will describe a 
new program that merits the subcommittee's support, called 
WWW.CONGRESSFORKIDS.COM, this program is an Internet site which 
will provide students and teachers with an entertaining and 
informative way to learn about the legislative branch. Using 
the miracle of the Internet, WWW.CONGRESSFORKIDS.COM offers our 
youth access to our institution in a way that will keep their 
attention and teach about the history, activities, and Members 
of this body.
    I would now like to yield my time to my friend, Dan, who 
can describe this proposal in detail. I thank the subcommittee 
for its careful consideration of this exciting program, and I 
am eager to work with each of you to see this concept become a 
reality.
                              ----------                              

                                           Tuesday, April 13, 1999.

                 INTERNET SITE WWW.CONGRESSFORKIDS.COM


                                WITNESS

DAN DISTEFANO, PROJECT DIRECTOR, WWW.CONGRESSFORKIDS.COM
    Mr. DiStefano. Thank you. Thank you, Congressman Rogan.
    My name is Dan DiStefano. I want to thank the members of 
this committee for allowing me the time to introduce you to 
WWW.CONGRESSFORKIDS.COM. Congress for Kids is an educational 
website created with the awareness that we are only months away 
from the new millennium. It is designed in response to the fact 
that most school-age children in America are not adequately 
prepared to take their place as informed, intelligent members 
of our democracy.
    This fact was highlighted in an article that appeared in 
the Los Angeles Times. The article presented a discouraging 
statistic. More high school students can name the Three Stooges 
that are able to name the three branches of government.
    Today kids' attention is more focused on electronic media 
than traditional textbooks and lectures. Congress for Kids 
takes advantage of this reality. It augments and deepens the 
social studies curriculum of upper elementary and intermediate-
level students by making the workings of government literally 
come alive. Congress for Kids brings life to the heart of the 
democratic process by giving students direct interactive 
contact with their elected Representatives and Senators, 
thereby allowing them to actively participate in the process of 
government. With that participation comes involvement, 
education, and the beginning of a lifelong awareness of the 
rights and responsibilities that come with being a citizen of 
this great country.
    In addition, Congress for Kids enables students to explore 
the rich history and lore of the Capitol, our legislative 
process, and Washington, DC itself. Congress for Kids provides 
classroom teachers with an invaluable tool. It is able to 
capture the imagination and enthusiasm of kids and make the 
study of history and government compelling and exciting.
    With the click of a mouse, students can hit a button on the 
screen and be connected or linked to their Congressman. They 
can follow him or her through a typical day on Capitol Hill. 
Another mouse click and students can take a tour through one of 
Washington's incredible sites. Still another click can bring 
them to their Congressman's office. There, in language they can 
understand, students will learn what is happening on the Hill 
and how it relates to them. Another click will help students 
with history and government reports by guiding them to other 
resources on the web or at their library.
    Congress for Kids wants to bring out students' natural 
inquisitiveness, so we have gone to a venue in which students 
are already deeply vested, computer games. We designed a 
variety of historical and government-related games. These are 
constructed not only for their ability to hold and captivate 
students and to maximize information about social studies, but 
to teach and reinforce critical thinking and decisionmaking 
skills.
    Congress for Kids will provide classroom teachers ample 
support intended to enhance its activities. We have included 
follow-up lessons and additional teacher resources. All our 
materials will be designed to correlate to national and State 
standards for social studies.
    In these few moments I have only been able to give you a 
smattering of all the enriching activities that we have 
designed into Congress for Kids. We are requesting $1.1 million 
to bring WWW.CONGRESSFORKIDS.COM to our Nation's students. It 
is a small amount with large returns, when you consider the 
effect it will have on the future of our children.
    By the year 2000, students in American classrooms will be 
more diverse than ever in our history. They represent a 
changing American society. In our test site, the Garvey School 
District, there are over 30 languages spoken among the 7,000 
students, everything from Arabic to Tagalog.
    Garvey is a district in which all its schools receive 
funding under IASA, title I. For many of Garvey's students, 
this is their first experience with democracy. Garvey's 
teachers and administrators take very seriously the 
responsibility for teaching the rich history and the 
understanding of our form of government. They see that in the 
new millennium education is moving toward online and distance 
learning. They understand the importance of preparing their 
students to become leaders and citizens of a strong and vital 
democracy. Congress for Kids can play an incredibly effective 
part in helping all of our Nation's schools achieve this goal.
    Thank you for letting me present it to you today.
    Mr. Porter. Mr. DiStefano, I liked all that I heard. The 
only concern I had was the part where you said explore the 
legislative process, because if we explore the legislative 
process, as Congressman Rogan will tell you, it is like 
watching sausage being made; you don't want to know. 
[Laughter.]
    Mr. Rogan. We could always let the Y2K bug take care of 
that, Mr. Chairman.
    Mr. Porter. That might be the best way.
    I am not quite sure what you want this subcommittee to do. 
Can you tell me specifically?
    Mr. DiStefano. I would like funding for $1.1 million, so we 
can establish the net, so we can build the architecture. There 
is a certain amount of equipment that needs to be built and 
installed in the Garvey School District.
    Mr. Porter. And you are asking, in other words, for an 
earmark for this program to be furthered?
    Mr. DiStefano. Hopefully, I am.
    Mr. Porter. Rather than under an existing program through 
the Department of Education, say, that might on a competitive 
basis award you that money; is that correct?
    Mr. DiStefano. That is possible, yes.
    Mr. Porter. Yes, well, that, as you probably realize, and 
Congressman Rogan realizes, is a very, very tall order. We 
generally, although sometimes it is done, but generally do not 
earmark funds; we provide them through specific programs that 
are authorized by law. And, yet, there are instances where 
earmarking is done.
    I think what we ought to do is perhaps explore this further 
with you to see where you might qualify for Federal funds for 
this kind of endeavor, because it seems to me it is a very 
worthwhile one, and it ought to be encouraged.
    Mr. DiStefano. Thank you.
    Mr. Porter. Thank you for coming to testify today.
    Mr. Rogan. Mr. Chairman, thank you.
    Mr. Porter. Thank you, Congressman Rogan.
    [The prepared statement of Dan DiStefano follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. The Chair is going to move out of order for a 
moment here to accommodate one of our congressional colleagues, 
and call on Betti Lidsky, a volunteer member of the board of 
directors of the Foundation Fighting Blindness. And she is 
accompanied by Ileana Ros-Lehtinen, our colleague from Florida.
    It is good to see you, Ileana.
    Ms. Ros-Lehtinen. Thank you.
    Mr. Porter. We are happy you could come and introduce our 
witnesses.
    Ms. Ros-Lehtinen. Well, what a pleasure. Thank you so much, 
Mr. Chairman, Mr. Bonilla, and staff, and the visitors here.
    What a pleasure it is for me to introduce this remarkable 
family, the Lidsky family. As is so often the case, we find out 
through our constituents more than they find out through us 
what really truly is important in life. Through the Lidsky 
family, the courage they have shown, and the inspiration that 
they have provided for thousands and thousands of individuals 
in the United States who are similarly affected as they are 
with a terrible disease, but a disease that we hope, through 
the help of your subcommittee, a disease that can be cured. 
With sufficient funds and with the help of so many interested 
scientists and researchers who are uncovering a cure for this 
disease that has affected Isaac, their son, has affected three 
of their four children.
    Through Betti and Carlos' efforts, they have really 
mobilized our south Florida community, our State of Florida, 
and, indeed, the whole Nation, in the volunteer work that they 
have undertaken in the Foundation Fighting Blindness. It is my 
pleasure to introduce to you two of the best heroes that they 
have in this terrible disease, this affliction that affects so 
many hundreds and thousands of people. I have been amazed when 
I see them work in the volunteer level and at the national 
level; they have been able to move mountains.
    So, with that, I would like to introduce to you Betti and 
her son, Isaac, Lidsky, and her husband and other daughter is 
here in the audience as well, as well as other individuals from 
the Foundation Fighting Blindness.
    Betti.
    Mr. Bonilla. Mr. Chairman, would you yield for a second?
    Mr. Porter. Mr. Bonilla.
    Mr. Bonilla. Thank you, Chairman.
    I would like to thank my colleague, Ms. Ileana Ros-
Lehtinen, for the wonderful, warm introduction. There is also a 
connection--she is a sister-in-law of Louis Lidsky who is in my 
congressional district in Laredo. And I had not met you before 
today, and I am just delighted, and I appreciate the chairman 
allowing her to go out of order, so that I can hear her 
testimony.
    Welcome.
    Ms. Ros-Lehtinen. Then you know what a formidable family 
they can be. I have learned to just say yes straight off the 
bat. [Laughter.]
    Mr. Bonilla. They are a very strong family.
    Ms. Ros-Lehtinen. It saves all that lobbying.
    Mr. Bonilla. Good family.
                                           Tuesday, April 13, 1999.

                         NATIONAL EYE INSTITUTE


                                WITNESS

BETTI LIDSKY, VOLUNTEER, MEMBER, BOARD OF DIRECTORS, ON BEHALF OF THE 
    FOUNDATION FIGHTING BLINDNESS
ISAAC LIDSKY, BETTI LIDSKY'S SON
    Ms. Betti Lidsky. Thank you very much. Good afternoon, Mr. 
Chairman and committee members. I am really, really honored and 
privileged to have this opportunity to address a committee that 
represents absolutely the most caring and humane government in 
the history of humankind--we are very fortunate--and to speak 
on behalf of the millions of Americans that are losing their 
eyesight.
    Today I sit before you to share a personal story. I face a 
most difficult challenge: finding a cure for a blinding eye 
disease called retinitis pigmentosa. This inherited disease is 
robbing three of my four children of their vision. As parents, 
I am sure you can imagine how devastating it would be to know 
that your children are threatened with blindness. Knowing that 
the hopes and aspirations of Ilana, Daria, and Isaac are 
jeopardized by a real impending darkness, I will fight with all 
my strength to find a cure that will light their way.
    Retinitis pigmentosa, macular degeneration, and Usher 
Syndrome are equal opportunity diseases that each day steal 
more vision from millions of Americans of all ages and races. 
Although they have different names, these genetically-inherited 
conditions all commonly cause the degeneration and death of the 
light-sensitive cells in the retina. These diseases are really 
a life nightmare, forcing those affected to experience their 
vision fading to darkness.
    Unfortunately, my story is all too common. Congressman 
Porter, you have met David and Betsy Brint from Chicago. They 
are friends of ours. The Brints recently became the proud, new 
parents of a baby boy named Alan. However, David and Betsy soon 
noted that Alan did not respond to their loving smiles. Alan 
has a severe form of retinitis pigmentosa. The Brints were 
further disheartened to learn that inadequate research funding 
slows the progress of many promising treatments.
    Although unbearable sadness and desperation often 
overwhelms us all, we are motivated by the knowledge that a 
group of devoted and brilliant scientists--thank God for these 
scientists--are diligently working to give the gift of sight to 
our children and millions of Americans. Ten years ago, these 
very same researchers were still trying to understand what 
caused these diseases. Sightsaving treatments and cures seemed 
out of reach, but what a difference these past 10 years have 
made.
    Today several promising experimental treatments could soon 
advance to human clinical trials. I am here to tell you that 
additional funding for the National Eye Institute could make 
these treatments a reality.
    For example, retinal transplants have the potential to 
restore sight to millions of patients. Scientists have already 
established the safety of this surgical procedure in humans. 
Unfortunately, the pace of research is hampered by a lack of 
funding. Further work is needed to make retinal transplants a 
reality.
    I often imagine the euphoria of bringing my children home 
after a retinal transplant. Little things come to mind--
throwing them the car keys, catching a glance, sharing a smile. 
These thoughts feel so real, so palpable, that I must stop 
myself and remember that it is not yet a reality.
    Retinal transplants are but one promising treatment. A new 
class of drugs called neurotrophic factors has tremendous 
potential to preserve vision. One of these drugs, Axokine, has 
already prevented retinal degeneration in a variety of animal 
models. The National Eye Institute needs additional funding to 
complete the necessary pre-clinical studies that will pave the 
way for clinical trials. Axokine could arrest my children's eye 
disease while they still have useful vision and can pursue 
whatever dreams they desire.
    Gene therapy represents the ultimate cure for these 
blinding eye diseases. A decade ago, gene therapy sounded like 
science fiction. However, today, using gene therapy, laboratory 
researchers have stopped retinal degeneration dead in its 
tracks. Scientists desperately need additional funding to 
quickly advance this potential cure. with increased Federal 
support, gene therapy could enter clinical trials while my 
children can still see.
    Congressman Porter, and committee members, we are in a 
desperate race against time. My children have only today; 
tomorrow just steals more of their vision. My son, Isaac, 
recently testified at a congressional briefing organized by 
Congresswoman Ileana Ros-Lehtinen, a champion of our cause. 
Isaac shared the sadness and frustration he feels knowing that 
sightsaving treatments would be available today if we could 
only fund the research opportunities that exist. It is my 
deepest desire that funding for the National Eye Institute will 
be increased to help make the gift of sight possible for my 
children, for Alan Brint, and for the millions of other 
Americans who each day lose more vision to inherited, blinding 
eye diseases.
    We are very close to the finish line. We need our 
government's support to be successful. Please help us in this 
race to stop blindness.
    I thank you for your time, for your concern, and for the 
rewarding work that you do. And if you have any questions----
    Ms. Ros-Lehtinen. Mr. Chairman, if I could just have Isaac 
say a few words to us? Thank you.
    Mr. Isaac Lidsky. I would just like to reiterate what my 
mother said. The single most frustrating characteristic of 
having one of these diseases is knowing that, due to the 
brilliance of our heroes, these scientists that we have been 
lucky enough to meet through these years, they have treatments, 
and it is really just a matter of time. And I say that not as 
an afflicted optimist, but as someone with a firm faith in 
science.
    Mr. Porter. Well, let me thank both Betti Lidsky and Isaac 
Lidsky for testifying, and Ileana, for your being here and 
providing them such support.
    It might have been this morning, when we had other 
testimony on blindness and diseases of the eye, when I said 
that my wife's mother has retinitis pigmentosa and has been 
legally blind for some years. She has, I think, 3 percent of 
her vision left, and obviously, it afflicts her greatly. So I 
have had some experience with the diseases and its effects on 
at least one individual. I realize how important the research 
commitment is.
    We assure you we are going to do the best we can.
    Ms. Betti Lidsky. We know you will.
    Mr. Porter. It is, as I said earlier, not going to be easy 
to do, but we are going to work on it and see if we can get 
there.
    Ms. Betti Lidsky. Thank you, Mr. Chairman. I have one 
question.
    Mr. Porter. Yes?
    Ms. Betti Lidsky. Can we help you----
    Mr. Porter. You sure can.
    Ms. Betti Lidsky [continuing]. To get----
    Mr. Porter. Good question.
    Ms. Betti Lidsky. How do we help you to get more increases?
    Mr. Porter. What we always get down to is, what are the 
most important priorities for our country? Members of Congress, 
people in this country don't think so, but Members of Congress 
are very responsive to their constituents. If they hear from 
the American people that biomedical research ought to be very 
high on the priority list, they are going to respond to that. 
They are already responding to it, obviously. So, to the extent 
that you can mobilize and get this message into every Member of 
Congress, is the extent to which we are going to be successful.
    Ms. Betti Lidsky. That is my goal.
    Mr. Porter. That is it. It sounds like, when you are given 
a goal, you get there, too. [Laughter.]
    Ms. Betti Lidsky. Thank you.
    Mr. Porter. Thank you for coming to testify.
    Ms. Ros-Lehtinen. Thank you, Mr. Chairman.
    [The prepared statement of Betti Lidsky follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

                                           Tuesday, April 13, 1999.

            NATIONAL INSTITUTES OF HEALTH EPILEPSY RESEARCH


                                WITNESS

TRACEY FLOURIE, PARENT VOLUNTEER AND ADVOCATE, ON BEHALF OF THE 
    EPILEPSY FOUNDATION
    Mr. Porter. Let me thank our other witnesses for allowing 
us to go out of order.
    Our next witness is Tracy Flourie, a parent volunteer and 
advocate, testifying on behalf of the Epilepsy Foundation.
    Mrs. Flourie.
    Ms. Flourie. Distinguished Chairman, my name is Tracey 
Flourie. I am from Delmar, California. Eight years ago I was 
the mother of three perfectly healthy children, two lovely and 
talented daughters and the most precocious and rambunctious and 
normal-in-every-way little boy imaginable. Then, on June 5, 
1991, I watched in horror as my 4-year-old son flung to the 
ground, his face frozen in a twisted grimace, his body writhing 
in convulsions. Before the day's end, dozens more of these 
tonic, atonic, or grand mal seizures would grip this precious 
boy, and a neurologist would pass sentence.
    Skyler Gaston Flourie, my third child, my only son, had 
idiopathic, primary generalized epilepsy seizures which 
affected his entire brain, for reasons we have yet to discover.
    Epilepsy can affect anyone of any gender, any ethnicity, at 
any age, at any time. There were no security measures we could 
have taken to ward off this thief. Good nutrition, childhood 
vaccinations, seatbelts, and bicycle helmets, not even good 
genes, nor all the love in the world, stopped this intruder 
from robbing my son of life as he had known it, of his health 
and safety, his independence and self-confidence, his capacity 
to learn.
    There is no predicting where or when a seizure might 
strike. It is like knowing there is an enemy laying in wait to 
ambush, but not knowing why is it attacking or from which 
direction it will come, or how to negotiate peace with my son's 
own brain.
    Soon the grand mals were joined by other seizure types: 
absence or petit mals which manifesting in blinking and staring 
spells; miaclonics, strong and uncontrolled muscle jerks, and 
the deadliest of all, atonic or drop seizures, where the body 
suddenly and without warning loses all postural tone and hurls 
my son violently to the ground.
    For years this once active and energetic boy was confined 
to a soft surface, his head helmeted to reduce further injury. 
Before long, an amendment was made to the original diagnosis. 
Skyler's seizures were now said to be intractable or 
uncontrollable, no doubt a part of a severe epilepsy syndrome 
which causes learning disabilities, developmental delays, and 
brain damage.
    When every available anticonvulsant medication alone and in 
combination had been tried and failed, we attempted to control 
his daily seizures with more obscure epilepsy therapies--
painful and dangerous steroid injections, IV immunoglobulin 
transfusions, four years on a rigid, high-fat ketogenic diet. 
We have tried experimental drugs, compassionate use drugs, and 
we have imported drugs from three countries outside of the 
United States. Within this little boy is implanted the latest 
advance in epilepsy treatment, a type of pacemaker which sends 
a methodical dose of electric current to his brain. And still 
he has seizures every day and night of his life.
    At times it is difficult to distinguish which are worse, 
the seizures which rack his brain and body or the medications 
he must take to try to control them. The side effect of 
Skyler's current five-drug regime include, but are not limited 
to, liver failure, kidney stones, sedation, depression, 
impaired cognition, decreased coordination, psychomotor 
slowing. Ironically, each drug also has the potential to worsen 
each of his seizure types.
    Medical emergencies and hospitalizations are the hallmark 
of my family's life. We live with the constant threat of status 
epilepticus, a life-threatening condition where a seizure 
simply will not stop.
    Skyler had six hospitalizations last year alone, four of 
which were to the intensive care unit. My two daughters' 
childhoods have been anything but normal. My husband and I have 
grieved for the loss of a healthy son, the loss of Skyler's 
potential, and we all mourn the physical, emotional,and social 
pain Skyler must endure.
    Mr. Chairman, over 2,000,000 Americans have epilepsy. Forty 
thousand of those will lose their lives this year to seizures. 
My son's story is neither unusual nor uncommon. He is but one 
of 750,000 Americans whose seizures remain uncontrolled.
    Without more discoveries into the causes of, and new 
treatments for, epilepsy, Skyler will spend his life dependent 
on family and government support, while his cognitive 
functioning continues to decline. Research alone holds the key 
to his future and the hope of a healthy, productive, and 
meaningful life. And the only possibility for future 
breakthroughs in epilepsy research are dependent on increased 
funding to the NIH and NINDS.
    God willing, my son went to school today, a private school 
for children with learning disabilities. He has already missed 
25 days this year due to seizures. He might work on fractions 
or take a spelling test or pour over his latest library book, 
but also included in his normal school week will be rounds of 
speech, occupational and vision therapy, adaptive physical 
education, assistive technology, and counseling.
    Skyler wants nothing more than to be strong and healthy and 
normal again, like he once was--to be able to learn to ride a 
bike or a skateboard, to play at a friend's house, to bathe and 
sleep and use the bathroom without constant supervision. He is 
an active soldier in our war against epilepsy, and he astounds 
me with his strength and perseverance, with a spirit that 
refuses to break. That he gets up in the morning and goes off 
to school each day, despite night after night of grand mal 
seizures demonstrates a will to conquer insurmountable 
challenges.
    Thank you for allowing me to share this story of my son, 
Skyler Gaston Flourie. I love him, and he is my hero.
    Mr. Porter. Mrs. Flourie, how old is your son now?
    Ms. Flourie. He is 12 years old now.
    Mr. Porter. He is 12? And he has had this since he was 4, 
did you say?
    Ms. Flourie. He was 4\1/2\ when he had his first seizure.
    Mr. Porter. You know, as I listened to you, and listened to 
Mrs. Rainey earlier, and this morning Jim and Jill Kelly talk 
about the effects of diseases on their children, it seems to 
me, if our media in this country could focus on these things, 
instead of on all the scandalous unimportant things that they 
do focus on, we might really get the American people mobilized 
behind things that are important to humankind and to our 
children.
    We are going to do the best we can to provide those 
resources. We know that they are going to help. And the faster 
we can do it, the faster we will make progress.
    You are wonderful to come here to testify today. We thank 
you so much for bringing home to us what it means to face a 
disease like epilepsy.
    Ms. Flourie. Thank you very much.
    Mr. Porter. We hope your son does better.
    Ms. Flourie. Thank you.
    Mr. Porter. Thank you.
    [The prepared statement of Tracey Flourie follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. We have six witnesses remaining on our list for 
this afternoon. We are already past our time, but we are going 
to obviously stay and complete our panel. Right now we are 
going to stand in very brief recess.
    [Recess.]
    Mr. Porter. The subcommittee will come to order.
                              ----------                              

                                           Tuesday, April 13, 1999.

                     NATIONAL INSTITUTES OF HEALTH


                            MEDICAL RESEARCH


                                WITNESS

WILLIAM R. BRINKLEY, DEAN, GRADUATE SCHOOL OF BIOMEDICAL SCIENCES, 
    BAYLOR COLLEGE OF MEDICINE, AND PRESIDENT, FEDERATION OF AMERICAN 
    SOCIETIES FOR EXPERIMENTAL BIOLOGY, ON BEHALF OF THE FEDERATION OF 
    AMERICAN SOCIETIES FOR EXPERIMENTAL BIOLOGY
    Mr. Porter. Our next witness is Dr. William R. Brinkley, 
Ph.D., president of the Federation of American Societies for 
Experimental Biology.
    Dr. Brinkley, it is good to see you again, sir.
    Mr. Brinkley. Thank you.
    Mr. Porter. Please proceed with your statement.
    Mr. Brinkley. Thank you, Mr. Chairman. I want to say, too, 
that it is a great honor, as many have said, to appear before 
your committee this afternoon. One can't help but be awed and 
inspired by sitting here and hearing the testimony and 
understanding what a difficult decision, choice, that you and 
your committee have to make and this wonderful work that you 
are doing. But many of us feel that your vision of doubling the 
funding for the National Institutes of Health in five years is 
a vision that will help everyone with the many diseases through 
the investment in biomedical research.
    I am Dr. William Brinkley, dean of the Graduate School of 
Biomedical Sciences at Baylor College of Medicine. I am also a 
professor, and I am a biomedical researcher with personal 
research interests in the area of cancer biology. I work on the 
mechanisms of cell division and genomic instability in 
cancerous cells. I have been funded by the National Cancer 
Institute, the National Institutes of Health, for this work. I 
am grateful to your committee.
    This year I am also very honored to serve as president of 
the Federation of American Societies for Experimental Biology, 
or FASEB. FASEB was founded in 1912. FASEB is the largest 
organization of life scientists in the United States with a 
combined membership of more than 56,000 researchers.
    It is in my role as FASEB's president that I appear before 
you today, Mr. Chairman, to ask the subcommittee's continuing 
support of your remarkable vision of doubling the NIH. We, both 
as citizens and as scientists, think that this investment is 
fully justified; that it can be reasonably managed, and that it 
represents the best hope for reducing health burdens which 
plague so many Americans, as we have heard here today.
    Mr. Chairman, FASEB recognizes that the NIH doubling effort 
would still be just a wish and a prayer without your personal 
leadership. Many of us look to the meeting of biomedical 
research community which you called on September the 21st in 
1997 as the event which began, a signal event that began to 
make the dream possible for this community and the community at 
large.
    Today we believe support for the dramatic effort to 
increase NIH funding is broad and deep. It is both bipartisan 
and bicameral. This level of agreement is virtually unique in 
the current political climate and is testimony to the 
leadership of this subcommittee in this effort on behalf of the 
American people.
    Mr. Chairman, a half century of sustained public investment 
in the NIH has given the United States the world's preeminent 
medical research enterprise. Scientific investigations 
supported by the NIH have given rise to the biotechnology 
industry, remarkable new products from the pharmaceutical 
industry. These discoveries, as well as those that go on in the 
laboratory of basic scientists everywhere, have improved health 
and reduced suffering.
    The future even looks brighter. Rooted in the deep 
understanding of how genes guide normal and abnormal molecular 
function, physicians will use the new technology to detect more 
precisely the risk and the presence of disease, in order to 
determine the most effective therapies for each individual 
patient. We are, indeed, approaching a new paradigm in 
medicine.
    To meet these emerging opportunities and needs in the 
biomedical research community, FASEB recommends $17.9 billion 
for the NIH in Fiscal Year 2000, a continuation of the doubling 
of 15 percent increase, the second step toward this remarkable 
vision.
    Now, in addition to its efforts in support of funding for 
biomedical research, FASEB also has interest in how this 
increased investment should be structured. Our scientists have 
developed the following policy recommendations, which I will 
very briefly discuss.
    The first has to do with competitive review and 
prioritization. First, FASEB wishes to restate its support for 
competitive merit review as the core tool of the successful NIH 
system of allocating science funding. FASEB agrees, however, 
with the recent study of the Institute of Medicine that, in 
prioritizing funding, NIH should expand its consideration of 
the burdens imposed by disease. And I have been more inspired 
by that as I have listened this afternoon.
    While we would warn against oversimplification of the 
question of disease burden, through use of simple numeric tools 
such as relative morbidity or mortality, FASEB supports 
increased public input into the NIH process and increased 
consideration of disease burdens, along with the less 
quantifiable factors, such as risk to society, for example, or 
degree of suffering.
    Secondly, in the area of planning, during the past year 
some very thoughtful observers have expressed skepticism as to 
whether NIH can effectively absorb such a large infusion of 
resources in a five-year period. FASEB does not share this 
concern or skepticism and believes that NIH can effectively use 
the resources envisioned by congressional leaders such as 
yourself. In order to manage this historic buildup of the NIH, 
however, FASEB believes that the NIH leadership should 
accelerate its planning process to identify cross-cutting 
problems, develop strategies for dealing with these issues, and 
communicate these plans to the scientific community, Congress, 
and the public.
    The second I want to mention is another area of concern to 
FASEB, and that is the declining number of clinical researchers 
and physician scientists in this country. Patient-oriented 
research is a crucial stage in the translation of basic 
research. All the excitement in the world in the laboratory--we 
have to have physician scientists to make that translation to 
the bedside.
    But with increased pressure to contain costs, funding such 
research has been significantly curtailed, and changes in 
medical practice itself have not encouraged more clinical 
researchers. FASEB believes that training research-oriented 
physicians should be given the highest priority in NIH 
planning. FASEB also recommends increased support for 
hypothesis-driven, patient-oriented research, as proposed in 
the NIH Fiscal Year 1999 spending plan and their Fiscal Year 
2000 budget.
    Mr. Chairman, FASEB has previously shared with this 
subcommittee other policy recommendations, and they are 
included in our formal report that we have given to you.
    So, in conclusion, Mr. Chairman, I want to say that, while 
each sector of the research establishment brings its own 
different perspectives to this debate, all are here with one 
overarching goal: progress against disease and disability, 
while FASEB members are practitioners of molecular biology, 
biochemistry, and other basic sciences, our cause is to apply 
our science to the reduction of human suffering.
    The basic message of a patient advocate fighting juvenile 
diabetes, spinal cord injuries, Parkinson's Disease, and other 
diseases such as we heard about this afternoon--we are all on 
the same page. We have the same concern, and that is to reduce 
the suffering through fundamental biomedical research. Without 
adequate funding for the NIH, progress will be slowed and 
suffering will be prolonged.
    Thank you for the opportunity of being here, sir. We urge 
this subcommittee to continue its remarkable work and to find 
the resources for the increase in NIH funding, which we know is 
broadly supported by the public and within Congress. Thank you 
very much.
    Mr. Porter. Dr. Brinkley, thank you for your testimony and 
for your leadership and FASEB's, and in providing us with the 
guidance that I think will ultimately get us to where we want 
to go.
    You are a professor at Baylor College of Medicine.
    Mr. Brinkley. Yes, sir.
    Mr. Porter. And I wonder if you could tell me--I am curious 
about this--how your institution has been affected by the 
changes in healthcare delivery. In many respects academic 
health centers like yours have been hurt by the movement to 
managed care. Has that affected you, and how do you make up the 
resources that you might have lost there?
    Mr. Brinkley. A very important question, Mr. Chairman. It 
certainly has affected all academic health centers. It has 
affected us because, prior to managed care, a large, perhaps 
the largest, component of funding of basic science departments 
came from the clinics within our own hospitals. But now that 
has changed, that funding now goes into another pot, and we end 
up without the support of the clinic and the funding that we 
have had, and we have had to rely more and more on grants. So I 
think the academic health centers have really suffered in many 
ways from this.
    Another area that I think has received suffering that is of 
concern is the--it is a different attitude. It is sort of a 
widening gap between the clinic and the basic sciences, as a 
result of managed care. Managed care is very businesslike and 
is focused on trying to get more patients through, working the 
doctors longer hours, and with the merit being on how many 
souls you pass through the clinic. And this doesn't give these 
bright doctors time for research. I think therein are some of 
the reasons we have a decline in the clinical research and the 
physician scientists.
    Education in the medical school and the curriculum has 
shifted toward producing--and this was important, I think, 
atthe time, and that is producing more family physicians and focusing 
on a sort of managed care environment, whereas students seldom hear 
about research in some many academic health centers anymore. Medical 
students, the brightest in the Nation, are really focused on becoming 
physicians and have very little time and opportunity in many cases to 
engage in research. So I think that is one of the reasons we have this 
decline.
    Mr. Porter. Now this is of great concern to me, because 
what we end up doing is providing increased funding for 
biomedical research, and the grants are made to academic 
medical centers, but they are making up a loss that they are 
receiving at the other end----
    Mr. Brinkley. Right.
    Mr. Porter [continuing]. That ought to be paid out of 
entitlement funds. I keep telling my counterpart on the Health 
Subcommittee of Ways and Means that that must be addressed by 
him; that we can't--that the providing of funding for clinical 
trials and clinical research ought to be done through 
entitlement funds and not through funds meant for basic 
research grants.
    It is a serious problem, and yet, we aren't making a lot of 
progress in this area. We need to work together to impact their 
decisionmaking as well.
    Dr. Brinkley, thank you very much for testifying once 
again. We are going, as you know, to do our best to be where 
you want us to be.
    Mr. Brinkley. Yes. Thank you.
    Mr. Porter. Thank you so much.
    [The prepared statement of William Brinkley follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

                                           Tuesday, April 13, 1999.

  EDUCATIONAL RESEARCH AND BEHAVIORAL AND SOCIAL SCIENCE RESEARCH AT 
                     NATIONAL INSTITUTES OF HEALTH


                                WITNESS

PATRICE O'TOOLE, ASSISTANT DIRECTOR, FEDERATION OF BEHAVIORAL, 
    PSYCHOLOGICAL, AND COGNITIVE SCIENCES; ALSO ON BEHALF OF THE 
    AMERICAN EDUCATIONAL RESEARCH ASSOCIATION, THE AMERICAN 
    PSYCHOLOGICAL ASSOCIATION, AND THE CONSORTIUM OF SOCIAL SCIENCE 
    ASSOCIATIONS
    Mr. Porter. The next witness is Patrice O'Toole, assistant 
director of the Federation of Behavioral, Psychological, and 
Cognitive Sciences.
    Ms. O'Toole.
    Ms. O'Toole. Thank you very much. I appreciate the 
opportunity to appear before the subcommittee today.
    I am testifying on behalf of the Federation of Behavioral, 
Psychological, and Cognitive Sciences, but also on behalf of 
the American Educational Research Association, the American 
Psychological Association, and the Consortium of Social Science 
Associations. And as such, my testimony will be in regard to 
educational research and behavioral and social science research 
at NIH.
    The authorization for the Office of Educational Research 
and Improvement at the Department of Education expires during 
this Congress. In considering the Fiscal Year 2000 budget 
request, questions have been raised about how well OERI has 
served its dual charges of research and improvement during its 
current authorization. The answer is not simple.
    Due to two critical events in recent years, OERI has not 
been able to meet goals established during its restructuring. 
The first was Sharon Robinson's departure from her post as 
Assistant Secretary for Research and Improvement. The second 
was the departure of most of OERI's senior staff at about the 
same time Dr. Robinson left. As OERI was losing its able 
leader, most of the institutional knowledge and expertise was 
also lost. Essentially, OERI went through the middle third of 
its authorization period with what amounted to a sack over its 
head and an arm and a leg tied behind its back.
    Finally, after two years, OERI has a new Assistant 
Secretary, Kent McQuire, who has a wealth of experience in 
administering funding programs for educational research and 
improvement. Now is the time to take advantage of new 
leadership and give OERI the resources it needs to do its job 
well.
    We support the administration's requested funding level and 
agree that the administration's proposed new initiatives are 
reasonable and important. The proposed initiatives fit well 
within the current framework and should be administered through 
the mechanisms now in place.
    We also support the administration's request for funds to 
continue the interagency educational research initiative. The 
union of OERI, the National Science Foundation, and NIH in a 
joint educational research program deserves strong support. We 
urge you to honor OERI's funding request for this initiative.
    We also recommend that the subcommittee add funds to the 
National Institute of Child Health and Human Development, so 
that NICHD can participate in this initiative. NICHD's budget 
included funds for this initiative, but OMB has cut them. Each 
agency should have the funds to do its part.
    Therefore, we urge you to recommend that Congress support 
the administration's request for $540.3 million to support 
OERI. The administration is requesting a 2.1 percent increase 
for the National Institutes of Health for the Fiscal Year 2000 
budget, but under this budget proposal NIH will not be able to 
sustain its current resources portfolio, let alone encourage 
future innovative scientific research.
    We support an increase of 15 percent for Fiscal Year 2000, 
and base this recommendation on two important factors. The 
first is that the pace of discovery in the full spectrum of 
health sciences is accelerating, and we need to keep that 
momentum going. The second is that healthcare costs are at a 
crisis proportion in this country, and one of the best ways to 
control those costs is to find better ways to keep people 
healthy.
    The ultimate purpose of health research, including health 
research in the behavioral and social sciences, is to make the 
citizens of this country healthier throughout their lifespan. 
Some of the most significant advances in science in recent 
years have been from research in genetics and neuroscience. 
Similarly, recent NIH-supported behavioral research has 
produced useful new knowledge, including a better understanding 
of basic behavioral and social processes and how they interact 
with biological processes.
    This understanding is the result of many lines of 
research--studies of lifestyle choices, dietary habits, the 
desire and ability to maintain exercise or medication regimens, 
psychological functioning, and influences of one's social and 
cultural environment on behavior.
    NIH's Office of Behavioral and Social Sciences Research has 
been pivotal in supporting and overseeing the studies. The 
President's budget request for OBSSR for Fiscal Year 2000 is 
$13.2 million, a nominal increase above OBSSR's current budget 
of $12.6 million.
    The Federation supports an additional $10,000,000 increase 
for Fiscal Year 2000 for OBSSR. This increase, combined with 
the President's request, would bring OBSSR's total budget close 
to $24,000,000 and would significantly augment its ability to 
coordinate behavioral and social sciences across institutes.
    A prime example of the application of behavioral 
intervention in conjunction with medication use has to do with 
the deadly diseases that are re-emerging after decades of 
dormancy in this country. Tuberculosis is the example that 
comes to mind. When medications are misused, the patient's 
disease cannot be controlled, and the bacterium that causes the 
disease develops resistance to medication. We face a serious 
challenge with respect to these diseases, and our ability to 
curb them may become the major public health problem of the 
21st century.
    OBSSR sees adherence to medication and treatment regimens 
as an area ripe for collaborative research in Fiscal Year 2000. 
In response, OBSSR plans to develop an RFA to encourage 
research and understanding and improving the adherence to 
treatment. We urge your support for a $10,000,000 increase that 
would enable OBSSR to follow through on these efforts.
    Federal research has a large role to play in contributing 
to the Nation's health because controllable lifestyle choices 
and behaviors impact heavily on the quality of life. Such 
behavioral choices as to smoke or not to smoke, and what foods 
and quantities of food to consume, are among the most important 
choices we make in determining our health. But each of us knows 
how difficult it is to do the right thing. NIH funding has 
provided timely and needed research that has been used to solve 
multi-faceted health problems. To continue successful 
biomedical and behavioral research requires that Congress find 
the resources for expanding NIH's budget without cutting the 
budgets of other important public health programs.
    We understand that the current budget caps make it 
difficult to prioritize needs, but we strongly urge the 
subcommittee to take whatever means necessary to find the funds 
to maintain a high level of support for NIH. We urge this 
subcommittee to recommend a 15 percent increase for NIH because 
the investment in knowledge will result in healthier citizens 
and healthcare cost savings that far exceed the research 
investment.
    Thank you.
    Mr. Porter. I can't think of anything that you said that I 
disagree with. [Laughter.]
    We believe that investment in all research is important, 
not just biomedical research, not only through NIH, but we have 
been urging the majority party, through the Speaker, to look at 
all research accounts for the Federal Government and do our 
best to plus them up. Most are basic research that wouldn't be 
done in the private sector. We think that a commitment to all 
of them actually enhances our ability to make a stronger 
commitment to biomedical research as well.
    So thank you for testifying today. We are going to do our 
best, obviously.
    Ms. O'Toole. Okay, thank you very much.
    Mr. Porter. Thank you, Ms. O'Toole.
    [The prepared statement of Patrice O'Toole follows:]

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                                           Tuesday, April 13, 1999.

                              RURAL HEALTH


                        COMMUNITY HEALTH CENTERS


                                WITNESS

THOMAS M. DEAN, M.D., PAST PRESIDENT, NATIONAL RURAL HEALTH ASSOCIATION
    Mr. Porter. Our next witness is Dr. Thomas M. Dean, M.D., 
past president of the National Rural Health Association.
    Dr. Dean.
    Dr. Dean. Good afternoon. My name is Tom Dean. I am a 
family physician. I have been in practice in a small town in 
South Dakota for about 20 years, and I am here today 
representing the National Rural Health Association. I certainly 
want to thank you, Mr. Chairman, for the opportunity to present 
testimony regarding our recommendations for funding for 
programs that are critical to the Nation's 50-plus million 
people that live in rural areas. NRHA is gratified that the 
House Rural Healthcare Coalition has reviewed these 
recommendations, and 50 Members have signed a letter supporting 
these recommendations.
    As you are well aware, rural areas are unique, and their 
problems are unique. Providing a complex service like 
healthcare in this environment is, indeed, a challenge. It 
occurred to me, listening to the very moving testimony this 
afternoon, that just think for a minute what it would be like 
to confront some of those very difficult problems that we have 
heard about if you lived in a remote, rural area where even 
basic services are very difficult to come by.
    So it is in that context that I would like to offer some 
thoughts about some of the programs that we think are extremely 
important to try to address some of these difficult problems.
    The first one that addresses some of these challenges is 
the National Service Corps. In fact, our membership feels that 
the National Service Corps is the No. 1 funding priority that 
should be considered in our legislative agenda. We would 
support a $40,000,000 increase in that program. In fact, our 
organization is extremely concerned that over the past three 
years, in spite of some serious manpower needs in rural areas, 
the National Service Corps has received no increase in funding 
throughout three cycles.
    As a former National Service Corps physician, who served 
first in the mountains of Eastern Kentucky, and for the past 20 
years on the prairies of South Dakota, I can attest to the 
value of the National Service Corps. I started our practice in 
1978, and we now have a professional staff of six, three of 
which are former NHSC clinicians. I can tell you frankly, and 
without any exaggeration, that if it were not for the support 
of the National Service Corps, that practice would not have 
survived.
    Even with the success of the National Service Corps, it is 
important for the subcommittee to understand that the $4.6 
million rural and innercity residents benefitting from the work 
of Corps clinicians represent only 20 percent of the Nation's 
underserved population. Despite the evidence that the United 
States has more physicians than it truly needs, it is very 
obvious that we still have serious physician shortages in many 
areas. The reality is that there is a marked maldistribution of 
primary healthcare providers in the country, and the National 
Service Corps is one way, one important tool, to try and 
address some of that maldistribution.
    Moving on, another program that is critical to healthcare 
in rural areas is the survival of vulnerable small rural 
hospitals, and the Medicare Rural Hospital Flexibility Program 
addresses this. This program creates an important alternative 
for small, rural hospitals struggling to survive. That has been 
addressed as the critical access hospitals, which is a program 
to provide regulatory relief and more equitable funding options 
for small rural facilities. NRHA urges the subcommittee to 
provide second-year funding of $25,000,000 to ensure that 
critical access hospitals receive the financial support 
necessary to fulfill this goal.
    Third, NRHA requests that the subcommittee provide 
$50,000,000 for rural health outreach, network development, and 
the telemedicine grant program. This program, which was 
reauthorized in 1996, provides important grant opportunities to 
rural communities. Since 1991, over 300 rural communities have 
benefitted from grant-supported healthcare service delivery.
    The NRHA recommends that Congress provide $15,000,000 for 
the rural health research grant program. This program currently 
supports five rural health research centers that provide data 
relevant to policy development, including work on rural 
hospitals, the supply of health professionals, delivery of 
mental health services, functioning of managed care systems, 
and more recently, the impact of the Balanced Budget Act on 
rural healthcare. As I mentioned earlier, many problems of 
rural areas are unique, and without relevant research data, 
good policy development is just not possible.
    Increased funding is also needed for the consolidated 
community health center program. These centers provide primary 
healthcare services for the Nation's rural and urban 
underserved populations. In fact, in many rural communities the 
only healthcare entity providing primary and preventive 
services to residents is a community health center. Overall, 
CHC provides services to 10,000,000 residents in underserved 
areas with about 50 percent of these being rural.
    It is important to note that CHCs have added more than 
1,000,000 uninsured patients to their rolls in the last three 
years alone, as more of our citizens have lost health insurance 
coverage and less charity care has been delivered by other 
providers. The NRHA urges the subcommittee to provide $1.25 
billion for the consolidated community health centers program 
for Fiscal Year 2000.
    Finally, the NRHA opposes the 20 percent decrease in health 
professions education programs contained in the President's 
Fiscal Year 2000 budget. These programs are the main source of 
education and training for healthcare providers, as virtually 
all graduate medical education payments, 99 percent, go to 
urban-based teaching hospitals.
    On behalf of the NRHA, I would certainly thank you, Mr. 
Chairman, for the opportunity to present these requests. There 
is more detail in the written testimony. I think it is 
certainly important that we work together to try to guarantee a 
healthier life for our rural and frontier Americans, and we 
certainly stand ready to work with the committee to reach that 
goal.
    Thank you.
    Mr. Porter. Thank you, Dr. Dean.
    Where is Wessington Springs?
    Dr. Dean. Oh, it is kind of in the middle. [Laughter.]
    It is in the middle of the east half.
    Mr. Porter. The middle of the east half.
    Dr. Dean. Sioux Falls is our big urban center, which is 
kind of a small town by most of the world's standards, but we 
are 125 miles northwest of Sioux Falls.
    Mr. Porter. Okay. The reason I ask is that, when I was a 
small boy, my father every year spent a month with the family 
in the Black Hills. So we would drive through your State and 
take most of a day to go across it, and stop in a little place 
called Kadoka, if you know where that is.
    Dr. Dean. Yes.
    Mr. Porter. I think it is on the interstate now.
    Dr. Dean. Yes, yes.
    Mr. Porter. It sure wasn't then.
    Dr. Dean. No.
    Mr. Porter. As a matter of fact, I have just convinced my 
wife that we are going to take a family vacation. I have not 
been there since the 1940's. We are going to take a family 
vacation there ourselves in the year 2000, which would be the 
100th anniversary of my father's birth, just to commemorate his 
love for the Black Hills, and it is a place my wife has never 
seen, and I haven't seen for a long time. So we loved your 
State.
    I don't have rural areas within my constituency, very 
little at least, and yet we have some very strong advocates on 
our subcommittee, Mr. Bonilla and Mr. Wicker, among others. I 
can assure you that they will be in there making a very strong 
case for funding for the programs in rural health that you 
mentioned.
    Mr. Bonilla is also, along with myself, in two other areas 
that you testified in respect to, have been very strong 
advocates. One is the health professions, and another is 
community health centers.
    While the administration has consistently either zeroed-out 
or knocked down the health professions, we have always put the 
money back in and attempted to provide a sufficient level of 
funding there.
    On the subject of community health centers, we put this at 
a very high priority and have plussed-up the account rather 
dramatically over the last few years, because we know that this 
is the place where many people, the only place where they can 
get access to our healthcare system.
    Dr. Dean. These are part of the safety net that we are 
trying to preserve, yes.
    Mr. Porter. Absolutely.
    Well, your testimony will help us a great deal. We 
appreciate your coming to educate us, and thank you for your 
appearance this afternoon.
    Dr. Dean. Thank you. Please stop in Wessington Springs when 
you come through. [Laughter.]
    Mr. Porter. All right.
    [The prepared statement of Thomas Dean, M.D. follows:]

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                                           Tuesday, April 13, 1999.

                              ORAL HEALTH


                                WITNESS

JOHN A. BOGERT, DDS. EXECUTIVE DIRECTOR OF THE AMERICAN ACADEMY OF 
    PEDIATRIC DENTISTRY
    Mr. Porter. Our next witness is Dr. John A. Bogert, DDS. 
executive director of the American Academy of Pediatric 
Dentistry, and maybe even as important, a resident of the 10th 
congressional district of Illinois.
    Dr. Bogert, it is wonderful to see you.
    Dr. Bogert. At least equally important, Mr. Chairman.
    Mr. Porter. At least.
    Dr. Bogert. I appreciate the opportunity to be here, and 
Chairman Porter, especially I would like to express our 
appreciation for your continued interest in, and commitment to, 
improving the oral health of our country's children.
    While the oral health of our Nation's children has improved 
dramatically over the past three decades, large pockets of 
children with severe dental disease and disability continue to 
exist in our country. Through the careful targeting of Federal, 
State, and private resources, we can make a substantial 
improvement in the lives of many of these underserved children.
    Good oral health is inextricably linked to a child's 
overall health and well-being. Poor oral health is linked to 
slower growth rates for toddlers and poor nutrition in 
children. Afflicted children experience pain and infection, are 
distracted from learning, spend over 1,000,000 sick days in 
bed, and nearly 500,000 children miss school days because of an 
acute dental condition each year.
    The National Institute of Dental Research found that 80 
percent of all cavities occur in only 25 percent of our 
children. These children are more likely to live in low-income 
and/or minority families. In addition to having increased 
incidents of dental cavities, tooth decay is usually more 
severe amongst these low-income and minority children.
    Parents report greater unmet treatment needs for dental 
treatment than any other health service. Children who do not 
receive regular dental care often end up seeking care in 
expensive hospital emergency rooms.
    The majority of U.S. children have ready access to oral 
health services financed through commercial health plans or 
family funds. However, access to dental services remains a 
common and serious problem for millions of low-income American 
children.
    That same sort of experience is not seen with access to 
medical care services. A recent report from the Department of 
Health and Human Services, Office of the Inspector General, 
found that only one in five Medicaid-eligible children receive 
any dental services annually, while four in five Medicaid-
eligible children receive medical services. We believe the 
population of children eligible for the new SCHIP coverage may 
experience similar problems with access to dental services.
    Children with more advanced oral diseases are more likely 
to require the services of a specialist in pediatric dentistry. 
Currently, there are only approximately 3,500 practicing 
pediatric dentists in the United States. Although limited in 
numbers and unevenly distributed, pediatric dentists provide 
approximately 30 percent of oral healthcare services for 
children in the United States and treat a disproportionately 
large share of Medicaid and medically-compromised children.
    In 1980, there were approximately 200 training seats per 
class for specialty training in pediatric dentistry. In 1999, 
that number is 165. The total number of professionally-active 
pediatric dentists has fallen approximately 10 percent during 
the 1990's. General dentists also provide oral health services 
for underserved children, especially general dentists who have 
been trained in general practice residencies. However, training 
of general dentists to provide pediatric services is carried by 
specialists in pediatric dentistry. Therefore, while AAPD 
supports increased training opportunities in general practice 
residencies, this also requires a major increase in training 
opportunities for specialists in pediatric dentistry to provide 
the necessary pediatric training.
    During last year's reauthorization of title 7, Congress 
amended title 7 to include pediatric dentistry as an eligible 
recipient of title 7 primary care training funds. This was a 
very important and long-overdue change in Federal health 
policy.
    The Fiscal Year 1999 appropriation provided $3.9 million 
for general practice residencies in dentistry. This year, with 
the addition of pediatric dentistry, we are asking for an 
appropriation to assure that $8,000,000 is available for the 
two dental programs within the primary care cluster. We believe 
it will require this level of training support to begin having 
an impact on the oral health status of millions of underserved 
children.
    AAPD does not look to government as the sole solution to 
the work power issue. A permanent solution will require a 
collaborative effort between the private practice community, 
the academic community, and Federal and State agencies. Several 
of these initiatives are already underway.
    In June 1998, HCFA and HRSA, in conjunction with the 
national dental organizations, sponsored the First National 
Conference on Medicaid Dental Issues. The findings and 
recommendations of that conference have spurred a variety of 
initiatives at both the Federal and State level to begin 
addressing the disparity in oral health status for underserved 
children.
    AAPD applauds the establishment of the HRSA oral health 
initiative with the personal support of the HRSA Director. This 
initiative has established regional dental issues teams in each 
of the 10 HRSA regions. These teams have begun work through 
their States and their respective regions to address oral 
health services access issues.
    HRSA has also embarked on a major study to determine the 
availability of appropriately-trained dentists to provide oral 
health services to underserved children. We urge HRSA to 
carefully consider the results of this study and to distribute 
primary care training funds to areas of documented need.
    The AAPD Foundation, our philanthropic arm, has embarked on 
a proactive effort to provide additional training opportunities 
for pediatric dentists by forging a collaborative partnership 
between practicing pediatric dentists, corporate entities, and 
the academic community. In fact, the academic community in 
pediatric dentistry, although operating in an austere funding 
environment, has used inventive methods to create 10 additional 
training seats over the next two years.
    Due to the various circumstances outlined above, there is a 
pent-up demand for additional training seats in pediatric 
dentistry. During the most recent application cycle, there were 
nearly 300 qualified dentist applicants vying for specialty 
training in pediatric dentistry, nearly twice the number of the 
available positions.
    As a program newly authorized to compete for training funds 
under title 7, it is likely that a large number of grant 
applications will be received to fund additional training 
positions in pediatric dentistry. We strongly urge HRSA to take 
into account the large and growing numbers of children with 
unmet dental needs, along with the declining number of 
practicing pediatric dentists, when distributing training funds 
in the early funding cycles of this new program.
    Chairman Porter, in closing, I would like to emphasize my 
strong belief that the recommended appropriation would send a 
very strong signal about this committee's commitment to 
improving access to dental services for millions of underserved 
children. Together with the other initiatives I have outlined, 
we have a real opportunity to make serious headway on 
eliminating a disturbing disparity in our children's oral 
health status. Oral disease is entirely treatable and largely 
preventable. We have the science and the technology, but we 
need a skilled and able workforce.
    Again, thank you, Mr. Chairman, for this opportunity. We 
have provided a more extensive written statement, which we 
would request be put in the record.
    Mr. Porter. It will be received.
    Dr. Bogert, what does it cost to train a pediatric dentist?
    Dr. Bogert. Depending on the location and the type of 
facility, about $50,000 a year. That is not including, say, 
capital costs, startup costs for equipment, and so on, but on a 
continuing basis, about $50,000 a year. I would add to that 
answer that there is service component of that training whereby 
those residents in pediatric dentistry would probably be 
providing about that amount of service to underserved children 
during their training. So once you have a startup for a seat in 
pediatric dentistry, it can be self-sustaining. It is the 
startup that is the problem.
    Mr. Porter. Well, if I understood you correctly, you are 
saying the number of training seats is going down.
    Dr. Bogert. Well, it has gone down and now gone back a 
little bit. We were as low as 145 several years ago.
    Mr. Porter. Now is that because the demand was low?
    Dr. Bogert. No. No, the demand has always been high. It is 
through some of the other fiscal constrictures that we have 
found in the system. Most of these training programs are in 
children's hospitals, and you heard previous testimony about 
the impact of managed care, and so on. So there has been a 
constriction in the pool, not a constriction in the demand, for 
those seats.
    Mr. Porter. If I understood what you said correctly, you 
said that it isn't simply enough to put additional funding in 
title 7. You would like either a separate line item or at least 
language in the report perhaps saying----
    Dr. Bogert. We would appreciate report language at least 
that would give HRSA direction and guidance, especially toward 
general practice residencies and pediatric dentistry. We are in 
a primary care cluster there, Mr. Chairman, as you know, with 
some huge entities, and we are pretty small.
    Mr. Porter. All right, thank you, Dr. Bogert. I appreciate 
your testimony today. It is good to see you again.
    [The prepared statement of John Bogert, DDS follows:]

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                                           Tuesday, April 13, 1999.

                         ORAL HEALTH EDUCATION


                                WITNESS

PATRICK J. FERRILLO, DDS, DEAN OF SOUTHERN ILLINOIS UNIVERSITY SCHOOL 
    OF DENTAL MEDICINE, AND PRESIDENT, AMERICAN ASSOCIATION OF DENTAL 
    SCHOOLS, ON BEHALF OF THE AMERICAN ASSOCIATION OF DENTAL SCHOOLS
    Mr. Porter. Next, Dr. Patrick J. Ferrillo, DDS, president 
of the American Association of Dental Schools.
    Dr. Ferrillo.
    Dr. Ferrillo. Good afternoon, Mr. Chairman. Like my 
colleague, Dr. Bogert, I would like to say thank you also for 
what you have done and your concern for the oral healthcare and 
needs especially of our children, but also oral health needs in 
general.
    Mr. Chairman, I am Patrick Ferrillo, Doctor of Dental 
Surgery, endontist and dean of Southern Illinois University 
School of Dental Medicine. On behalf of the American 
Association of Dental Schools, as its chief elective officer, I 
am pleased to have the opportunity to present our Fiscal Year 
2000 funding recommendations for the health professions 
training and research programs that are critical to dental 
education. These programs are increasingly important, as the 
U.S. Surgeon General is expected to issue a report later this 
year on the connection between oral health and systemic health.
    Mr. Chairman, we are very proud of the general dentistry 
residency program, which is a cost-effective primary care 
success story. This training provides graduates with primary 
care training and clinical experience to serve the broad 
community of patients.
    Eighty-seven percent of these students who receive general 
dentistry training remain in primary care practice. Dentists 
who have the benefit of this advanced residency training 
program make fewer referrals to dental specialists, which is 
especially important in the rural and underserved urban areas, 
where logistics and financial barriers can make specialization 
care unobtainable.
    In my school, the Federal investment in this primary care 
training program means that many low-income children see a 
dentist for the very first time. If this program was not in 
existence, I can assure you that many of the children of our 
working poor in the community, as well as those at the poverty 
level, would not have received care.
    My general dentistry residency program provides a 
significant amount of care to the underserved population in 
east St. Louis. My residency program was expanded through the 
Federal startup grant in the early 1990's and has been self-
sufficient ever since.
    I would like to also talk a little bit about the pediatric 
dentistry residency training program that Dr. Bogert has just 
previously mentioned. It is being implemented by HRSA, as a 
result of the 1998 health professions reauthorization law. Both 
general dentistry and pediatric dentistry will have grant 
cycles to expand these training opportunities in Fiscal Year 
2000, assuming there is sufficient funds. These programs are 
essential to meeting the needs of Medicaid and CHIP 
populations, and are the key workforce provisions of a current 
oral initiative between HRSA and HCFA that seeks to improve 
access to oral healthcare.
    To continue to support general dentistry and to meet the 
needs of pediatric dentistry, the AADS urges the subcommittee 
to fund these primary care dental programs at the $8,000,000 
level in Fiscal Year 2000 for providing sufficient funding in 
the primary care cluster.
    Mr. Chairman, I would like to talk about another issue, and 
that is the Ryan White HIV/AIDS dental reimbursement program 
that has been accomplishing two major Federal objectives in 
fighting against AIDS: one, the support for essential oral 
services for patients of limited means, and, two to provide 
clinical experience for dental students and residents in the 
care and management of people living with HIV/AIDS.
    This program represents a partnership between the Federal 
Government and dental education programs in which the 
government partially offsets the cost these programs incur by 
serving a disproportionate share of indigent AIDS patients. 
However, because awards institutions receive from this program 
cover less than 50 percent of the uncompensated cost incurred, 
AADS is concerned about the ability to maintain the current 
level of the services in our communities, especially since oral 
healthcare is always shown to be a highly needed service for the HIV/
AIDS patients.
    Early in the epidemic, dental care was directed toward 
eliminating infection and pain, so not as to worsen the 
patient's already fragile condition. With the advent of multi-
drug therapy, thank goodness, many patients today are living 
long, but yet are requiring an increased scope of dental 
intervention. Patients today need periodontal procedures or gum 
therapy, root canals, advanced restorative procedures such as 
crowns, bridges, and partial dentures. Therefore, there is an 
increased demand for the services provided by this program.
    Fortunately, preliminary results from HRSA's evaluation of 
this program confirms the success in expanding access to care 
and improving training of our future practitioners. AADS would 
like to recommend for Fiscal Year 2000 funding of $9,000,000 
for the Ryan White HIV/AIDS dental reimbursement program.
    I would like to speak on behalf of another program which we 
strongly support, and that's the National Health Service Corps 
scholarship and loans forgiveness programs. In recent years, 
Congress recognized the need to increase dental participation 
in the Health Service Corps. There has been progress in meeting 
the demands for loan repayment awards. However, we urge the 
subcommittee to renew its efforts to encourage the Corps to 
reactivate dental scholarships, expand its oral health 
initiatives, and partner more closely with dental education 
institutions.
    AADS also urges you to continue the support for the title 7 
health professions programs that played a critical role in our 
ability to recruit and retain minority and disadvantaged 
students in dentistry. We are especially urging increased 
funding for the disadvantaged faculty loan repayment program, 
as this is a tremendous tool for us for recruiting graduates 
with high depth back into academia and research, helping us to 
deal with an extremely critical shortage of dental faculty that 
we are experiencing today in this country.
    Finally, Mr. Chairman, on behalf of AADS, I want to express 
our gratitude for your leadership, and this subcommittee's, in 
the area of biomedical research. We endorse the testimony of 
the American Association of Dental Research regarding 
priorities and funding for the National Institute of Dental and 
Cranial Facial Research in Fiscal Year 2000.
    And, again, I thank you for this opportunity to testify 
before you, and I would be pleased to answer any questions that 
you may have for me.
    Mr. Porter. Dr. Ferrillo, I take it you don't disagree with 
anything that Dr. Bogert said?
    Dr. Ferrillo. No, I don't.
    Mr. Porter. Dr. Bogert, I take it you don't disagree with 
anything Dr. Ferrillo has said. [Laughter.]
    So, well, we appreciate very much your coming to testify. 
We certainly will do our best to be there on the concerns that 
you have expressed. Thank you for this advice on how we should 
proceed.
    Dr. Ferrillo. Thank you.
    [The prepared statement of Patrick Ferrillo, DDS follows:]

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                                           Tuesday, April 13, 1999.

                   UNIVERSITY HEALTH-RELATED RESEARCH


                                WITNESS

ROBERT M. CAREY, M.D., DEAN AND JAMES CARROLL FLIPPIN PROFESSOR OF 
    MEDICAL SCIENCE, UNIVERSITY OF VIRGINIA SCHOOL OF MEDICINE
    Mr. Porter. Our final witness today is Dr. Robert M. Carey, 
M.D., dean and James Carroll Flippin professor of medical 
science at the University of Virginia's School of Medicine.
    You have testified before, yes.
    Dr. Carey. Yes.
    Mr. Porter. It is good to see you again.
    Dr. Carey. Thank you, Chairman Porter. I am honored to 
testify on behalf of the University of Virginia School of 
Medicine, located in Charlottesville, Virginia. The School of 
Medicine is one of the Nation's best centers of medicines and 
biomedical investigation, attracting over $100,000,000 per year 
in research funds.
    During the decade of the 1990's, three Albert Lasker Awards 
and two Nobel Prizes have been received on the basis of 
biomedical science performed at the University of Virginia. 
Four of our basic science departments are in the top ten 
nationally. Our vision is to be a leader in discovery, 
dissemination, and application of knowledge that will optimize 
the health of our citizens.
    NIH funding has been absolutely critical to the achievement 
of our vision. For example, our renowned prostate cancer 
program, which is in the process of implementing gene therapy 
to prevent metastatic spread of this disease which kills, would 
not be possible without our National Cancer Institute Clinical 
Cancer Center, two large NIH program project grants, several 
individual NIH RO1-type research grants, and the NIH General 
Clinical Research Center. Because all of these components are 
present in one institution, a working partnership has been 
created between basic sciences, translational researchers, and 
patient-oriented physician investigators. All of these 
components are necessary to create an investigative environment 
that results in a high impact.
    At the University of Virginia School of Medicine, three 
major discoveries, leading to the earlier mentioned prizes in 
this decade, were highly dependent on NIH funds. The discovery 
of G-proteins as a major mechanism whereby cells convert 
external signals into function, the discovery of nitrate oxide 
as a major dilator of blood vessels, and the discovery that 
peptic ulcer disease is due to a bacterium, helico bacter 
pylori, now treatable with a combination of antibiotics--
indeed, every advance in medical science requires two kinds of 
NIH support: program funding to conduct the research itself and 
appropriate infrastructural funding for the environment.
    While the need for program funds is self-evident, 
infrastructure support, which is equally important, is often 
overlooked. Infrastructure support for biomedical science is at 
a crossroads today. Too little attention has been given, 
especially to our research facilities in universities which 
have not kept up with modern technology, and many of which are 
woefully outdated.
    At the University of Virginia School of Medicine, for 
example, only one-third of our research space has been judged 
as excellent. One-third is adequate, and one-third, which is 30 
to 50 years old, is not capable of sustaining a modern 
biomedical research program. Almost all other medical school 
deans could tell you a similar story.
    The problem of quality of research space is compounded by 
the rapid and unanticipated advances in biomedical technology. 
Only a few years ago, the technique of homologous recombination 
in genetics opened the door to genetically-engineered mice. 
This marvelous approach now allows us to eliminate a gene from 
an animal to observe the consequences of its removal. This is a 
powerful tool in determining the function of proteins encoded 
by a gene, thus, realizing the benefits of the human genome 
project.
    These so-called knock-out mice are adding much to our 
understanding of human biology and disease. Studies using these 
animals also form the basis for gene therapy in man. However, 
breeding these mice requires thousands of animals which must be 
housed in a viral-pathogen-free environment. Infection can 
result in the loss of one, two, or more years of work. The 
infrastructure at almost all universities,including our own, is 
insufficient to provide barrier facilities to house these valuable 
animals. This is posing a problem of crisis proportions in medical 
schools and other biological laboratories around the country.
    Support for research infrastructure though the NIH will 
enhance institutional research capacity by renovating outdated 
facilities and building new ones--creating new approaches to 
the support of animal facilities, providing state-of-the-art 
instrumentation and other research equipment, and promoting 
information and computer technology. Infrastructure support can 
be provided by increasing funding to a National Center for 
Research Resources, the research support arm of the NIH.
    Medical innovation and its successful implementation depend 
upon both the funding of promising areas of research and giving 
researchers access to modern laboratory facilities and 
equipment. As dean of one of the Nation's outstanding medical 
schools at the University of Virginia, I believe we need both 
to create a high level of stable research program funding and 
to establish an equitable policy for financing construction, 
renovation, and modernization of biomedical research facilities 
and our other infrastructural requirements.
    I would like to conclude with a resounding thank you for 
your daring insight and for your championing and the support of 
the NIH. With your vision and support, we will continue 
together to improve health and the quality of life for all 
Americans.
    Thank you.
    Mr. Porter. Dr. Carey, thank you for your testimony. I had 
the pleasure, as recently as Monday, of being at your medical 
health center at Charlottesville. I would like to invite myself 
to come down and see your research facilities, if I may. Could 
I impose----
    Dr. Carey. You are hereby invited.
    Mr. Porter. Thank you.
    Dr. Carey. We would love to have you. You just tell me when 
you want to come.
    Mr. Porter. Well, I would really like to do that. I have 
been there before, but never have had a chance to see the 
research facilities, and many of the things you describe to me 
are very exciting, and I would like to take advantage of its 
proximity to Washington and come down and visit you, if I may.
    Dr. Carey. Thank you. It would be our pleasure.
    Mr. Porter. The testimony, the answer to the question that 
Dr. Brinkley mentioned regarding managed care and its effect 
upon academic health centers, I understand your answer might be 
a little different than his. Can you tell us what effect it has 
had on the University of Virginia?
    Dr. Carey. Yes. I wouldn't disagree with what Dr. Brinkley 
said. I would simply amplify on it.
    Academic health centers throughout the country today are in 
a crisis situation. Many are losing tens of millions of 
dollars. If you think of those which come immediately to mind 
as outstanding research-oriented academic health centers, many 
of them are under a severe financial situation today. The 
Balanced Budget Act has created a negative financial situation 
for many of these academic health centers through reduction in 
reimbursements for relative value units of clinical care, and 
by adjusting the DRG, diagnosis-related group, categories. In 
addition to that, indirect medical education has been cut.
    The impact of that on biomedical research and clinical 
research is going to be overwhelming unless it is addressed, 
and I can't overemphasize the acuteness of the situation. The 
funds which come to medical schools from hospitals are going to 
be cut. That will have an impact on research. Also, in general, 
managed care has reduced the amount of professional income 
coming into medical schools from clinical faculty earnings. 
This has thereby reduced the amount of discretionary funds 
available to deans of medical schools to seed fund and provide 
any sort of infrastructural support for research. That is why 
an attention to infrastructure is so important.
    Mr. Porter. Is it fair to conclude, then, that the effect 
on the University of Virginia is the same as the effect on 
Northwestern University and the University of Chicago?
    Dr. Carey. Yes. I am not familiar with their precise 
problems, but I think it is fair to say that all, almost all, 
academic health centers are this year seeing a huge reduction 
in their funding, which results in no discretionary funds for 
support of biomedical research.
    Mr. Porter. I understand. Of course, the problem is I don't 
think we can make it up on the discretionary side alone. It has 
got to be made up on the mandatory side.
    I really thank you for coming to testify.
    Dr. Carey. Thank you.
    Mr. Porter. I am sorry that you had to wait so long. We are 
almost two hours beyond our scheduled time, but we have done 
the best we can.
    Dr. Carey. I am delighted to be here, and we will see you 
in Charlottesville.
    Mr. Porter. Thank you so much.
    Let me thank all the witnesses.
    Our subcommittee will stand in recess until 10:00 a.m. 
tomorrow.
    [The prepared statement of Robert Carey, M.D. follows:]

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                                         Wednesday, April 14, 1999.

                AMERICAN ASSOCIATION FOR DENTAL RESEARCH

                                WITNESS

JOHN M. CRAWFORD, BDS, PH.D., PROFESSOR OF CLINICAL PERIODONTICS, 
    COLLEGE OF DENTISTRY, UNIVERSITY OF ILLINOIS AT CHICAGO
    Mr. Porter. The subcommittee will come to order.
    We continue with our third panel of public witnesses. We 
are going to have 10 panels.
    The staff wants me to remind witnesses of two provisions of 
the House Rules. In addition to their written statement, 
nongovernmental witnesses must submit a curriculum vitae and a 
statement of Federal grant or contract funds that they or the 
entity they represent have received. If you have any questions 
concerning the applicability of this provision or questions as 
to how to comply, please contact the subcommittee staff.
    In order to accommodate as many members of the public as 
possible, we have scheduled over 20 witnesses for each session 
and are still not able to hear from all who want to testify. 
Overall, we will hear from over 200 witnesses in these 10 
panels. As a result, I have to strictly enforce the rule 
limiting testimony to 5 minutes and would ask that, as you 
testify, you keep in mind limitation in consideration for the 
other witnesses that must follow you.
    I would also tell you that our last witness of the day is 
Christopher Reeve, who will be testifying for the committee 
scheduled at 11:30. Based upon our information from yesterday's 
hearing, he probably will be considerably later than that.
    There is presently a vote on in the House of 
Representatives, but considering that we have so many 
witnesses, I am going to not cast a vote and simply proceed 
right now.
    Our first witness is Dr. John M. Crawford, BDS, Ph.D., 
Professor of Clinical Periodontics at the College of Dentistry, 
University of Illinois at Chicago. He is going to testify on 
behalf of the American Association for Dental Research.
    Dr. Crawford. It is nice to see an Illinoisian.
    Dr. Crawford. Thank you. Mr. Chairman, I am here today to 
represent the 5,300 members of the American Association for 
Dental Research. I would like to discuss the year 2000 budget 
for the National Institute of Dental and Craniofacial Research.
    Dentistry is changing rapidly. Our focus is now on health, 
and it is not limited to repair of dental tissues. Our focus is 
the face and the body, rather than just the mouth. This broader 
responsibility is reflected in the name change from the 
National Institute of Dental Research to the National Institute 
of Dental and Craniofacial Research. Thank you for initiating 
this name change which is implicit of the broader scope of the 
institute.
    The Centers for Disease Control have just announced the 10 
most significant public health measures of the 21st century. 
Included in this is fluoridation of the Nation's water supply. 
Can oral science contribute to this list in the 21st century? I 
would like to briefly discuss three areas which I think may, in 
fact, make this list.
    Firstly, the diagnosis and prevention of craniofacial 
deformities. Approximately a quarter of million people in the 
U.S. are born with some sort of defect, and three quarters of 
these affect the craniofacial region. This costs the Nation 
approximately $1,000,000,000 a year.
    The NIDCR-funded scientists are at the forefront in 
analyzing the genetic basis of these diseases; and, given 
sufficient funds, I believe that we are on the verge of 
significant breakthroughs in the diagnosis and prevention of 
these disorders.
    Secondly, linking oral health to systemic health. At the 
turn of the century in 1999, 50 percent of heart attacks, the 
leading killer in the western world, and 25 percent of low 
birth rate babies have no traditional risk factors associated 
with them. But we now have evidence that oral disease, 
particularly gum disease, is a strong risk factor for heart 
attacks and low birth rate babies. In fact, the risk factor for 
gum disease in heart attacks is as strong as high cholesterol 
and smoking.
    Care of low birth babies costs us $5,000,000,000 annually. 
If we can lower the incidence of low birth rate babies by 
treating gum disease, it will mean that 1 in 10 babies in this 
country have a better chance of a good start in life.
    The third area I would like to discuss are the disparities 
between different racial groups and different income groups in 
oral health, which are just as strong as the disparities in 
systemic health. In our inner city dental school in Chicago, I 
see this on a daily basis in our clinics.
    Enormous gains in this area can be achieved by investment 
in behavioral science, in epidemiology and in health services 
research; and, in this, the agency for health care policy and 
research can help us enormously by funding projects that 
analyze dental effectiveness in care. Therefore, I would 
support an increase in funding level to $225,000,000 for this 
agency.
    Let me mention three research projects that we have 
recently had in our Clinic and Research Day at the university 
to illustrate how boundaries between oral science and medical 
science have now really disappeared.
    The first one examined the little molecular motors which 
enable cells to move in organ development and tissue 
development; a second study analyzed how viruses, which need to 
live in living cells, can actually trick the living cells into 
living longer; and the third investigated protein regulation 
and blood clotting.
    These three studies illustrate that when the government 
invests in the National Institute of Dental and Craniofacial 
research it not only invests in oral science but invests in 
projects which investigates very significant systemic problems 
like cancer, tissue development and blood clotting.
    Mr. Chairman, the AADR supports the proposal of the ad hoc 
group for medical research funding which calls for a 15 percent 
increase in the National Institutes of Health for fiscal year 
2000; and specifically we request the sum of $276,518,000 for 
the National Institute of Dental and Craniofacial Research.
    On behalf of the AADR, I thank you for this opportunity to 
testify; and I will be happy to answer any questions that you 
may have.
    Mr. Porter. Dr. Crawford, thank you for your testimony. We 
hope to reach the level that you have suggested. It is going to 
be a difficult, very difficult proposition this year to do so 
within the budget caps, but we are going to do our best to 
achieve it. We thank you for coming here to testify this 
morning.
    Dr. Crawford. Thank you for listening, sir.
    [The prepared statement of John Crawford follows:]

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                                         Wednesday, April 14, 1999.

                 NEW YORK UNIVERSITY SCHOOL OF MEDICINE


                                WITNESS

ROBERT GLICKMAN, MD, DEAN
    Mr. Porter. Next is Dr. Robert Glickman, MD, Dean of the 
NYU School of Medicine. Dean Glickman.
    Dr. Glickman. Good morning, Chairman Porter. I am Robert 
Glickman, the new dean of the New York University School of 
Medicine. It is an honor to be here today to discuss a few of 
the exciting initiatives under way in our school, as well as to 
share my views regarding fiscal 2000 appropriations.
    On behalf of the NYU School of Medicine, I want to begin by 
thanking you and the subcommittee for your leadership and 
increasing funding for the National Institutes of Health and 
for recognizing the importance of strong Federal investment in 
biomedical research. Such investment represents new treatments 
and cures that will eradicate today's disorders and have some 
promise for diseases of the future.
    For fiscal year 2000, the NYU School of Medicine supports a 
recommendation of the Ad Hoc Group for Medical Research 
Funding, which calls for an appropriation of $18,000,000,000 
for the National Institutes of Health. Sustained, stable growth 
in the NIH is necessary to build on past scientific successes, 
address present medical needs and anticipate future health 
challenges.
    The NYU School of Medicine takes pride in the history that 
goes back to 1837 and includes the initiation of and 
participation in many major events in American medicine through 
two centuries.
    I would like to highlight two exciting initiatives that are 
under way at our school and that provide a snapshot of our 
commitment to providing a unique atmosphere of public service, 
the highest quality of medical care for the underserved, as 
well as distinguished research and superior medical education. 
Both of these initiatives are being invested in significantly 
by our school.
    The school is developing a comprehensive program in women's 
cancer. This program will be an integral component of the 
Kaplan Comprehensive Cancer Center and will encompass the full 
spectrum of clinical services, advanced training and some 
fundamental and translational research into those cancers that 
primarily affect the female reproductive tract.
    The components of this program include etiology and 
biology, risk identification and prevention, screening, 
diagnosis and treatment, palliation and rehabilitation and 
psychosocial support. The program proposed will consolidate 
these services in one area that will result in less stress for 
the patient and consultation opportunities among the many 
physicians participating.
    The school is seeking $10,000,000 in support for this 
program from the subcommittee through the health resources and 
service administration's health facilities construction 
account. The school is also working with the Steven Hassenfeld 
Children's Center to launch a model integrated and 
comprehensive treatment program for children with cancer, 
particularly brain tumors. Brain tumors are the leading cause 
of cancer-related deaths in children and adolescents in North 
America and Europe. Current estimates suggests that there will 
be 200,000 pediatric cancer survivors by the turn of the 
century, yet currently there are few comprehensive care 
programs that support children and their families over the long 
term and none that serves a large, economically disadvantaged 
population.
    Over 40 percent of our center's patients are 
underrepresented minorities, and more than half are uninsured 
or insured through Medicaid. This program will connect access 
to specialty care, to social and psychological services for 
children with brain tumors. School-related problems are four 
times more frequent in pediatric cancer patients than in 
healthy children and often include specific learning 
disabilities with underlying deficits in essential cognitive 
processing that limit the survivor's ultimate educational 
attainment and vocational level.
    The school is seeking the subcommittee's support of 
$2,000,000 through the Department of Health and Human Services' 
Office of Minority Health account for this demonstration 
program, which we believe will serve as a national model for 
providing comprehensive care to children with brain tumors.
    Thank you again, Mr. Chairman, for affording me this 
opportunity to describe these programs and to appear before 
you.
    Mr. Porter. Dr. Glickman, thank you for your testimony.
    There is no reason why you might know this, but 2 years ago 
right about this time I was a patient, an outpatient, in your 
medical center in New York City seeing Dr. John Sarno about the 
terrible back problems I was experiencing.
    Dr. Glickman. I hope they are gone.
    Mr. Porter. They are not only gone, they are gone without 
surgery, even though I had 4 months of extreme pain.
    Dr. Glickman. Wonderful.
    Mr. Porter. Dr. Sarno in fact came down and testified 
because we had a panel on alternative therapies, not just for 
backs but generally; and he came down and testified later that 
year. And so I have a great fondness for NYU Medical Center and 
your school. So thank you for coming
    Dr. Glickman. Thank you.
    Mr. Porter. Thank you for testifying this morning.
    [The prepared statement of Robert Glickman, M.D., follows:]

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                                         Wednesday, April 14, 1999.

                         SOCIETY OF TOXICOLOGY


                                WITNESS

STEVEN D. COHEN, D.SC., PRESIDENT
    Mr. Porter. Our next witness is Dr. Steven D. Cohen, 
President of the Society of Toxicology.
    Dr. Cohen. Good morning, Mr. Chairman.
    Mr. Porter. Good morning, Dr. Cohen.
    Dr. Cohen. I, too, thank you very much. I appreciate this 
opportunity to present the views of the Society of Toxicology 
in support of fiscal year 2000 funding for the NIH and 
specifically for the National Institute of Environmental Health 
Sciences, the NIEHS.
    The Society of Toxicology, SOT, is a professional and 
scholarly organization with over 5,000 members in academics, 
industry, and government. Our members include many of the 
world's leading experts in the field of toxicology.
    A major goal of the society is to promote the use of good 
science in the regulation and the development of rules that 
control or deal with environmental risk issues. We believe that 
the combination of sound science and sound judgment is the best 
way to address these environmental risk issues. To this end, we 
work closely with the National Institute of Environmental 
Health Sciences in the conduct and support of environmental 
health-related research. We are appreciative of the outstanding 
research efforts of NIEHS and are supportive of the research 
priorities identified by the Institute's director, Dr. Kenneth 
Olden.
    We have provided a few examples in our written testimony of 
important research that has been supported by NIEHS. Such 
research is helping us to better understand how the environment 
effects our health and has guided appropriate remedial action, 
at least as such areas as air pollution, dealing with lead 
poisoning in children and so forth.
    Exciting new research includes such things as NIEHS' 
environmental Genome Project through which we will eventually 
better understand why some people are more susceptible to 
environmental hazards than others. Also, new, innovative 
transgenic animal models of diseases will permit more efficient 
toxicity testing; and these models are being developed at NIEHS 
through the National Toxicology Program.
    SOT also supports NIEHS' research on the potential adverse 
effects of the very diverse group of chemicals that are 
commonly referred to as endocrine disrupters, and these have 
been much in the news over the past few years. These agents are 
alleged to have an effect on thyroid and reproductive function 
and development. We are pleased that NIEHS is proceeding with 
studies to examine the linkage between exposure to such 
chemicals and diseases affecting women's reproductive health.
    It is important to note that there is diverse scientific 
opinion as to the extent that such environmental agents truly 
do effect human health or the environment. Therefore, such 
studies are very important.
    The Superfund basic research program is administered by 
NIEHS with pass-through funding from the EPA. This important 
collaboration between the two Federal agencies will ensure that 
environmental cleanup decisions for a large number of Superfund 
hazardous wastes sites that are across the country, that such 
cleanups based on sound environmental health science.
    The Superfund program supports basic research on possible 
relationships between environmental contamination and cancers, 
such as breast and prostate, and birth defects and other 
diseases. These programs at 69 universities across the country 
bring together uniquely biomedical scientists and engineers to 
provide the science base needed to make accurate assessments of 
human health and environmental risks and to develop the best 
prioritization for cleanup of these problem sites.
    In conclusion, the members of the Society of Toxicology 
strongly believe that our national investment in biomedical 
research must be increased and sustained over the long term. 
This will permit us to take advantage of the many exciting 
research opportunities that exist in the environmental health 
sciences. The Society strongly supports efforts to double 
funding for the NIH by fiscal year 2003. To accomplish this, we 
urge your committee to support the recommendation of the Ad Hoc 
group for biomedical research funding calling for a 15 percent 
increase for NIH in fiscal year 2000.
    We also urge the committee to provide a corresponding 15 
percent increase for NIEHS, given the enormous role it plays in 
expanding our understanding of how the environment may affect 
our health. Whether it is exploring asthma incidents in 
children, testing the toxicity of environmental chemicals or 
better understanding the genetics underlying environmental risk 
factors, NIEHS supporter research is leading the way to bridge 
the gap between public policy and environmental health science.
    Thank you very much for all you have done for environmental 
health science and for this opportunity to testify. I would be 
happy to answer questions you may have.
    Mr. Porter. Dr. Cohen, thank you very much. Your timing was 
absolutely perfect.
    [The prepared statement of Dr. Steven D. Cohen, follows:]

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    Mr. Porter. Let me ask you a question about PVC polyvinyl 
chloride. Have there been studies as to its effect on human 
health or are there studies going on now?
    Dr. Cohen. PVC I don't believe has been studied as 
extensively as the vinylchloride monomer which is what is used 
to make the polymer, the plastics. You start with the single 
molecule. The vinyl chloride we know is the carcinogen. No 
question about it. The big issue in my field in toxicology is 
that the dose is what makes the poison, and we feel very 
strongly as an organization, as professionals and as scientists 
above all, that it is really the dose that determines it.
    The direct answer to your question is, I don't know that 
there are studies ongoing of the polymer, of the plastic bags. 
I am aware of the controversy.
    Mr. Porter. The question really wasn't a fair one, but I 
thought you might be aware of that.
    Let me tell you that Representative Pelosi and myself are 
working together. We are going to have a special hearing after 
our regular hearings are completed, probably sometime in May or 
early June, on environmental health in children, children's 
health. And we are going to be working with EPA, with NIEHS and 
with CDC to put together a very focused panel on this and try 
to bring some attention to the importance of these issues, 
which is really your field.
    Dr. Cohen. Right. We have been in communication 
specifically with EPA on a number of issues regarding health 
lately, as well as FDA; and certainly we partner with NIEHS. 
And if my organization can help in terms of nominating experts 
who might consult for your panel, assist your panel, we would 
be happy to do so.
    Mr. Porter. Thank you very much, Dr. Cohen.
    Dr. Cohen. Thank you.
                              ----------                              

                                         Wednesday, April 14, 1999.

                            HAYMARKET CENTER


                                WITNESS

ANTHONY COLE, VICE PRESIDENT
    Mr. Porter. Our next witness is Anthony Cole, the Vice 
President of Haymarket Center and a good friend from Chicago--
--
    Mr. Cole. Yes.
    Mr. Porter [continuing]. Who I have known for some time. It 
is nice to see you. Thank you for coming to testify.
    Mr. Cole. Thank you very much, Mr. Chairman. I can just 
tell you I must use my glasses. Some people here would say, 
join the crowd.
    Thank you, Mr. Chairman, for providing Haymarket Center 
with the opportunity to present testimony. As you said, I am 
Anthony Cole, Vice President of Haymarket Center, a 
comprehensive substance abuse treatment facility located on 
Chicago's near west side. We were founded in 1975 by Monsignor 
Ignatius McDermott. Haymarket Center currently offers 
integrated treatment services to an average of 13,000 clients 
annually, making us the largest drug abuse treatment center in 
the City of Chicago in Cook County.
    Over the past 24 years, we have remained committed to 
providing each of our clients with the maximum chance for 
sustained recovery from addiction, a goal which we achieve by a 
continuum of care to every client. This continuum is the 
integration of drug abuse prevention, treatment, health 
services, day care, parent training, vocational education, job 
placement and screening for domestic violence and gambling 
addiction.
    Mr. Chairman, the treatment community is working to better 
understand which treatment methods are most effective to 
particular subgroups of abusers and addicts. Haymarket, 
therefore, encourages the subcommittee to continue to fund 
knowledge, development and application programs through the 
Center for Substance Abuse Treatment, which is expanding, and 
enhance treatment models for high-risk and hard-to-place 
populations.
    Haymarket recognizes this subcommittee receives no credit 
for savings to taxpayers resulting from increased investment in 
treatment. However, research consistently demonstrates the cost 
effectiveness of treatment, as well as our unnecessary costs 
associated with substance abuse, particularly for addicted 
mothers, produces hundreds of millions of dollars in savings 
resulting from the delivery of drug-free babies. In fact, 
Haymarket Center has delivered over 500 drug-free babies during 
the past 10 years.
    According to a study released in January of 1999 by CSAT, 
every man, woman and child in America pays over $1,000 a year 
to cover the $276,000,000,000 total national costs of untreated 
substance abuse. These costs are associated with lost 
productivity, law enforcement, health care and social welfare.
    Haymarket understands that the Federal Government has 
limited substance abuse treatment and prevention 
resources.While Haymarket Center never turns away an individual seeking 
treatment, we also focus our limited Federal resources on high-risk 
populations such as pregnant and postpartum women and their children.
    Due to the establishment of an on-site health clinic, 
Haymarket has been able to address the variety of medical 
problems which impede our client's treatment progress. We urge 
the subcommittee to encourage CDC and HRSA to continue to work 
with community-based organizations such as Haymarket. Our work 
with these agencies controls the spread of infectious disease 
and reduces chronic disease and other risk factors through the 
integration of preventive and primary health care into 
substance abuse treatment.
    Finally, Haymarket is pleased to report to the subcommittee 
that we have embarked on an exciting new collaboration with the 
Chicago Job Corps Center to integrate vocational education and 
job placement services with substance abuse treatment. The 
collaboration will screen new Job Corps participants for 
possible referral to Haymarket. It would also link graduates of 
Haymarket treatment programs to job training and vocational 
education services available at the Job Corps Center.
    We thank the subcommittee for its past support of this 
effort and ask that the subcommittee urge the Department of 
Labor to continue to encourage Job Corps Centers to coordinate 
with community-based organizations such as Haymarket Center.
    Thank you again, Mr. Chairman, for this opportunity to 
testify. I hope that when you are in Chicago this year that you 
will find the time to visit again with Father McDermott and the 
Haymarket Center clients.
    As a result of yours and this subcommittee's support, we 
are expanding and improving our capacity to help individuals 
successfully recover from the disease of addiction.
    Mr. Porter. Well, you certainly are. When I visited, I was 
very impressed with the work that you are doing. You are 
continuing the kinds of success rates that you have had in the 
past, I assume. And Father Mac is still active?
    Mr. Cole. Seven days a week.
    Mr. Porter. I figure, he is wonderful.
    You are doing a terrific job there; and, obviously, we want 
to do what we can to provide the resources for you and others 
like you that are doing what you are on the front lines of drug 
treatment and child abuse and so many different things.
    And, Anthony, this is a very exciting development with Job 
Corps. We think Job Corps is one of the best programs to move 
people from very high-risk situations into productive, good 
lives; and I think that collaboration is a very, very important 
development that you ought to export to other communities, as 
you said in your testimony.
    Mr. Cole. Thank you very much, Chairman.
    Mr. Porter. Thank you for coming to testify.
    Mr. Cole. Yes.
    [The prepared statement of Anthony Cole follows:]

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                                         Wednesday, April 14, 1999.

                        AMERICAN TRAUMA SOCIETY


                                WITNESS

HARRY TETER, DIRECTOR
    Mr. Porter. Our next witness is Harry Teter, the Director 
of the American Trauma Society.
    Mr. Teter. Good morning, Mr. Chairman. I appreciate the 
opportunity to be here with you this morning and to talk about 
the interests of trauma and American Trauma Society and the 
problems that we are also facing.
    I am Executive Director of the American Trauma Society. We 
are a membership organization. We have roughly 210 of the 
Nation's trauma centers as our members. We have about 2,500 of 
the trauma nurses and doctors that are on the front line of 
fighting trauma every day. As you know, Chicago, too, has one 
of the great trauma centers at Cook County that has led much of 
the work in developing trauma systems across the country.
    We are very happy to be here to make certain comments and 
recommendations regarding the budget.
    I want to say, first off, how pleased we were with the IOM 
study on injury. It was an excellent job. I know that this 
committee and the Congress directed that this be done. I truly 
think you got your money's worth on this one.
    I also want to thank you very much for the support that you 
have given to research at the National Center for Injury 
Prevention and Control and, specifically, the cost-benefit 
study that will soon be started on trauma services.
    We are very much aware in this world of managed care, et 
cetera, that the great shift from payments for services to 
payment for value we believe that will not harm us, ultimately, 
but this study is critical to show the world where the value is 
coming from. And this will be done objectively, and I think it 
is going to be a seminal study. I really appreciate the support 
this committee has given for that study.
    I also would like to thank you for the support of the 
National Center for Injury Prevention and Control. This is 
where the real science of injury is being examined. I believe 
they are the closest thing we can have to an institute, a 
national institute; and I would urge and hope that they would 
be funded and increased just as the centers are done.
    I will soon be able to provide for you a compilation of the 
research being done, not only by this center in Atlanta but by 
the 10 national centers throughout the country that look into 
injury issues; and I will provide that for you within 30 days.
    We do urge that this program, as I say, be funded and 
increased commensurate with the NIH; and I again think that the 
facts and certainly this study justifies that action, because, 
as they point out here, the enormous problem is that injuries 
in this country justifies us looking at it at all levels.
    I also want to thank you for your consideration of funding 
for the national Trauma Systems Development Program. This was a 
program that was renewed last year by the Congress.
    I think, again, the trauma systems are critical to saving 
lives in this country; and I would urge that that program be 
funded at the authorized level of $6,000,000.
    We are very happy with the emergency medical services for 
children and, again, think that these programs combined really 
attack two things--the proper care of the trauma victim and the 
prevention of trauma so we don't even have to get into that 
care system.
    I want to share with you a new program the American Trauma 
Society is doing and urge your help, if we can, on this. It is 
the Trauma Information and Exchange Program. It is to link the 
trauma centers in the country, to take the information that we 
gain from our trauma registries, from the records we keep 
there, to basically improve the quality of trauma care by 
benchmarking, by looking at ways we can better manage trauma.
    This is very critical for us to get there, especially in 
the days when every procedure is being questioned in our care 
of the trauma victim. As you, I am sure, are well aware, when 
we get a trauma victim and start the care, it is very difficult 
to sit back and get second opinions and to wonder whether this 
or that has to be done. We have to save life and this study, 
this work we are doing, I think will convince those that the 
procedures at all the trauma centers are not excessive but 
indeed are well managed and are for the best care of what we 
know to be roughly 8,000,000 plus a year that land in the 
serious area of trauma. We must look after them.
    The American Trauma Society is very unique in that we have 
all the disciplines of trauma. Our trauma registers are the 
people in the hospitals that train on keeping records and 
collecting proper data, so that this trauma information program 
I think will be an extremely important for the country and will 
be a resource to you, to anyone who is interested in the care 
of the trauma victim.
    I would also like to point out another study being done and 
that is for the care of the trauma victims' families. We have 
done a great deal for the care of trauma, but we have yet to 
really address the needs of the families of trauma victims. 
This is a new project the Trauma Society is trying to take on, 
to find out the way we can best help from the minute a family 
has to be notified of a horrific incident, where they are 
called to a hospital, and being able to provide support for 
them.
    The doctors and the nurses who are in the battle to keep a 
life saved must then often have to deal with the families, and 
they need the right talents, the right way in which to do this. 
If not done properly, families disintegrate rapidly in these 
issues, especially with the loss of a life of a young one.
    We would be very happy to talk to the substance abuse and 
mental health services agency, and we would urge consideration 
be given to a small study with them on the effects this has on 
doctors and nurses and how we can do this job better. We have 
just recently had a meeting on this, and it has been very 
powerful.
    But I really believe that the work being done in trauma is 
showing wonderful results. Again, verified by this, we know 
that we need to do more. We are quite willing to do it. It is a 
partnership of all of us, and I really thank you today.
    Mr. Porter. Thank you very much, Mr. Teter. It is 8,000,000 
victims and 200,000,000 more watching ER and Chicago Hope who 
are aware of the good work that you do through those programs.
    [The prepared statement of Harry Teter follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. You should know, I am sure you do, that Mr. 
Dickey, who was originally a great antagonist to injury 
control, is now the great protagonist.
    Mr. Teter. We appreciate the epiphany.
    Mr. Porter. He really has become a very, very strong 
supporter. It is interesting how people's minds can be changed 
with information and communications. And it has been very good 
between CDC and Representative Dickey, and he has become a very 
strong supporter.
    Mr. Teter. We certainly hope that all the committee will 
see the value in that, the work being done there.
    I found it interesting to see the Nation finally believing 
prevention works. And I cite two examples of recently in the 
Washington Post where they said, no question about the work 
done in fire, smoke detection has saved countless lives and 
likewise in the violence area. We are seeing the violence go 
down in homicides, especially to men.
    So the work they are doing at the center needs this urgent 
support. This is why we ask that the $20,000,000 be added to 
the budget.
    Mr. Porter. Thank you very much for your testimony.
    Mr. Teter. We thank you, sir.
                              ----------                              

                                         Wednesday, April 14, 1999.

                        AMERICAN CANCER SOCIETY


                                WITNESS

GERALD LYNN WOLLAM, MD, VICE PRESIDENT AND PRESIDENT-ELECT
    Mr. Porter. We are now only 15 minutes behind our schedule, 
unfortunately; and, again, I would ask that witnesses stick to 
their time limit, if they possibly can.
    Dr. Gerald Lynn Woolam, the Vice President and President-
Elect of the American Cancer Society testifying on behalf of 
the Society. Dr. Woolam.
    Dr. Woolam. Good morning, Chairman Porter.
    The American Cancer Society thanks you and the members of 
the committee for your continuing support for the programs 
which we think will help us eventually to win the war on 
cancer.
    Cancer will soon be the leading cause of death in this 
country, and that is largely because of the unprecedented aging 
and changing demographic profile of our Nation. Older Americans 
account for 61 percent of all the cancers, and that is 61 
percent of all the cancers translates into an astonishing 36 
percent of our overall health care costs in this country. So 
these changes are going to require us to make tough choices 
regarding allocating resources for health care in the future.
    Similarly, unless we address the burden of cancer among 
populations who are not benefiting from current scientific 
advances the minorities, medically underserved and uninsured 
Americans health costs and economic burden will also continue 
to escalate among those groups.
    The good news is that there are a variety of proven 
activities and programs that can make a difference. With your 
leadership, we can chart a new course, one that focuses not 
just on late-in-the-game, beat-the-buzzer kinds of cures but 
increasingly on prevention and earlier detection programs as 
well as access to state-of-the-art treatment, while continuing 
to fund adequate research for cancer cure. The investment we 
ask you to make today pales in comparison to the human and 
economic costs of status quo funding.
    My written testimony details our funding request, but I 
would like to highlight some of those areas of most pressing 
concern.
    First, we must close the gap between those with access to 
high-quality health care and those who unnecessarily suffer and 
die because of lack of access and information. Congress must 
give priority to those agencies and programs which target the 
poor and medically underserved, strengthen and expand our 
public health infrastructure at the community level and ensure 
facilitated access to quality care.
    Second, we must improve data collection and surveillance 
efforts by enhancing the existing programs such as the National 
Program of Cancer Registries, NPCR, and other programs at NCI, 
the National Center for Health Statistics, the Department of 
Defense, and the Indian Health Service. This information gives 
us the tools to determine patterns, monitor trends, guide 
research and develop and target effective interventions.
    The single most important area for long-term savings and 
improved health is a greater focus on prevention and early 
detection of cancer. We know that over two-thirds of cancers 
are preventable and yet we currently invest less than 1 percent 
of our health care dollars on these front-end strategies and 
that includes tobacco, diet and exercise.
    Tobacco use is the most preventable cause of disease, 
disability and death in the United States; and it accounts for 
about a third of all U.S. cancers. But the multistate 
settlement agreement with the tobacco industry which recently 
occurred does not completely take care of this problem. The 
Federal Government continues to have an important role and a 
responsibility to prioritize tobacco-controlled efforts by 
providing increased funding for the CDC's effective national 
tobacco control programs.
    More than half of all cancers occur in sites that are 
accessible to screening, and regular screening of all Americans 
would significantly reduce death from breast, colorectal and 
cervical cancers. Critical programs which we support in this 
area include the CDC's national breast and cervical cancer 
early detection program and colorectal and prostate cancer 
awareness initiatives.
    Finally, our cancer research efforts are paying off with 
remarkable breakthroughs in our understanding and ability to 
combat this disease.
    We support the goal of doubling the NIH budget within the 
next 5 years, funding more grants, developing new treatments 
and prevention strategies. Our Nation's challenge is to reduce 
the gap between what is known through scientific discovery, 
what is practiced by health care professionals and what is 
experienced by patients; and, of course, we stand ready to work 
with you to develop an action plan and appropriate policies to 
move to a world when the burden of cancer is reduced through 
research, prevention and control.
    Thank you again for letting us testify.
    [The prepared statement of Gerald L. Woolam, M.D., 
follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. Dr. Woolam, I certainly don't disagree with 
anything that you said. I very much agree that if we develop, 
through research, new approaches to treatment and they aren't 
known or practiced out there in society, we haven't done 
anything. So, obviously, it is very important that we work on 
the dissemination side. It is very important that we work on 
access. I wish we had in our subcommittee more jurisdiction 
over that subject, but we do have jurisdiction, for example, 
over community health centers, and we have put it at a very 
high priority and plused up funding very greatly there when 
and, very often, particularly in rural areas, the only 
available care is through a community health center for people 
who otherwise wouldn't be treated. So we definitely agree with 
your priorities.
    I wish that the Congress had come to grips with the whole 
tobacco issue. I hope that the administration is going to 
independently, through the Department of Justice, proceed 
against tobacco companies on the Medicare side, because I think 
a great deal of progress can be made if we can bring to bear a 
lot of pressure on the industry; and, unfortunately, we haven't 
done a very good job of that yet.
    Mr. Woolam. We haven't given up.
    Mr. Porter. Good, let's work together on that. Thank you 
very much for your testimony.
    Dr. Woolam. Thank you very much, Mr. Chairman.
                              ----------                              

                                         Wednesday, April 14, 1999.

        AMERICAN LUNG ASSOCIATION AND AMERICAN THORACIC SOCIETY


                                WITNESS

EDWARD R. BLOCK, MD
    Mr. Porter. Dr. Edward R. Block, MD, representing the 
American Lung Association and American Thoracic Society. We 
just said some things that you probably like to hear.
    Dr. Block. Yes.
    Good morning, Chairman Porter. I am Edward Block. I am 
Professor of Medicine at the University of Florida College of 
Medicine; and I am also Associate Chief of Staff of Research at 
the Gainesville, Florida, VA medical center. I am also 
President of the American Thoracic Society, the medical section 
of the American Lung Association; and I am here this morning to 
speak to you on behalf of those two organizations.
    I first want to thank you and the subcommittee for the 
generous support that you have shown for research. Your support 
is making research possible. It is making possible today's 
scientific discoveries and tomorrow's cures.
    I also want to share with you a concern that is held by the 
entire research community. The legislative rider that was 
slipped into last year's Omnibus appropriations bill making 
federally funded research data subject to Freedom of 
Information Act inquiries is bad public policy. This 
legislation rider will compromise patient confidentiality, 
increase research costs, stifle public/private research 
cooperation and could possibly lead to harassment of 
researchers.
    The American Lung Association and the American Thoracic 
Society strongly urge Congress to repel this legislative rider. 
The American Lung Association and the American Thoracic Society 
realize that our request of a 15 percent increase in NIH 
funding and our programmatic, excuse me, that our request of a 
15 percent increase in NIH funding and our programmatic 
increase requests at CDC are impossible under the current 
budget caps. We do pledge ourselves to continue to express our 
strong concern with the budget caps to other Members of 
Congress.
    You have a copy of our written statement and our funding 
recommendations. I would briefly note our call for Federal 
action at NIH and CDC to respond to the growing problem of 
asthma in the United States. While we were pleased that the 
President's budget, which I learned at breakfast this morning 
you don't pay too much attention to anyway, includes funding 
for asthma, we are concerned that the CDC does not play a 
central role in the President's administration response to 
asthma. We strongly urge this subcommittee to provide 
$20,000,000 for CDC to respond to asthma in the United States.
    I would also like to note and acknowledge the recent 
investment into tuberculosis that has been made at the National 
Institutes of Allergy and Infectious Disease and at the CDC. 
Continued resources need to be provided for NIH and for CDC to 
develop new tools to respond to the growing problem of global 
TB and to prevent the development of widespread, multidrug-
resistent tuberculosis in the United States.
    In the few remaining moments, I would like to talk about 
one of my patients named Joyce and how the decisions you make 
here will affect her life.
    Joyce is a 56-year-old mother who suffers from primary 
pulmonary hypertension. This is an uncommon disease that causes 
high blood pressure in the blood vessels of the lung. It 
affects women twice as often as men. Three quarters of people 
with this disease will not survive 5 years. We don't know what 
causes it, and we don't have a cure for it.
    Since being diagnosed, Joyce has had to quit work as a 
hospital administrator. She is no longer able to enjoy the 
outdoors, even to take walks with her friends.
    Her therapy is epoprostenol. This is a vasodilator medicine 
that is administered continuously by a small pump into a large 
catheter that is inserted into her chest. This treatment costs 
her over $60,000 a year. After just about 3 years of treatment, 
Joyce is now on Medicaid. She is housebound. She is tethered to 
a pump, which keeps her alive but doesn't cure her; and her 
only hope of getting any relief is through a lung transplant.
    Recently, investigators supported by the National Heart, 
Lung and Blood Institute have localized the gene defect that 
causes primary pulmonary hypertension, Joyce's disease. Now 
this is a major step forward towards a cure, but it is only the 
first step. Understanding how the gene defect causes pulmonary 
hypertension, using this understanding to target a cure and 
then implementing the cure, are the next vital steps.
    For Joyce, it is a race, and in all likelihood researchers 
will probably not find a cure in time for her. Joyce's only 
hope is to wait for someone to die and give their lungs to her. 
That is a macabre hope. My hope is that, with research support, 
scientists will turn the discovery of the gene defect into a 
cure for pulmonary hypertension, so that the next patient I see 
with this disease will not have to quit their job, will not be 
forced onto Medicaid, will not become homebound and will not be 
waiting for the current owner of a healthy set of lungs to die 
so that they can live.
    Joyce's plight is not that different from patients 
suffering from asthma, cystic fibrosis and lung cancer. For 
each of these diseases, science has identified gene defects but 
has not yet developed a cure. Nor is Joyce dissimilar from the 
30,000,000 Americans with chronic obstructive pulmonary 
disease, a disease for which we have a better understanding of 
the cause but do not yet have an effective therapy or cure.
    Mr. Chairman, to help bring hope to Joyce and cures to all 
Americans who suffer from chronic and acute lung disease, I 
urge you and the subcommittee to provide a 15 percent increase 
for the National Institutes of Health. And I thank you for the 
opportunity to testify this morning.
    Mr. Porter. Dr. Block, thank you for your very articulate 
testimony.
    [The prepared statement of Edward Block, M.D., follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. I want to tell you that the provision on 
Freedom of Information that was inserted in the Omnibus bill is 
a great example of why Omnibus bills should not be tolerated by 
the Congress, because the negotiations had at that point passed 
to the leadership and the representatives of the President, and 
the provision never would have survived the normal process of 
going through conference and having a normal bill.
    And that is one of the exact reasons why we want to get a 
budget resolution early, and we are going to get one today, we 
think, and get our allocations and get our bills out early and 
do them in the normal way separately so that we don't have this 
kind of insertion happen in the process, where nobody even 
knows that the provision is going in. And I am hopeful that we 
can follow the normal process. It is going to be difficult to 
achieve our goals, but I think in the end we will, as I said, 
this morning.
    That was all, by the way, in confidence. You weren't 
supposed to mention that.
    Dr. Block. It was a confidential environment, I understand.
    Mr. Porter. Thank you, Dr. Block.
    Dr. Block. You are welcome.
                              ----------                              

                                         Wednesday, April 14, 1999.

                           DIABETES RESEARCH


                               WITNESSES

FREDERICK J. SPERLING
SUSAN SPERLING
    Mr. Porter. Our next witness is Frederick J. Sperling, a 
private citizen, who I know very well since he is one of my 
constituents; and I met with him in a group in his home.
    Welcome, Fred.
    Mr. Sperling. Thank you. My daughter, Susan.
    Mr. Porter. He is going to tell us about Susan in a minute.
    Mr. Sperling. Thank you. Chairman Porter, Representative 
DeLauro, Representative Hoyer, and Representative Cunningham, 
sitting next to me is my 10-year-old daughter Susan who was 
diagnosed with insulin-dependent diabetes just over 3 years ago 
now.
    I still remember that terrifying day after she was 
diagnosed when she was in intensive care and we feared for her 
life. After she overcame that threat, we learned about the more 
insidious threat posed by diabetes.
    As you know, Mr. Chairman, diabetes, which afflicts more 
than 16,000,000 of our fellow Americans, is the leading cause 
of blindness, kidney failure and amputation and a major 
contributor to stroke and heart disease. On average, diabetes 
shortens life expectancy by over 15 years, and yet by any 
objective measure diabetes has not received its fair share of 
the NIH research budget.
    Mr. Chairman, you have been outspoken in recognizing that 
funding decisions should be based, among other factors, on the 
number of people affected and the costs to our society. Our 
Nation today spends more than $137,000,000,000 every year on 
diabetes and its complications, and the Federal government 
alone spends more than $40,000,000,000 on diabetes. That 
accounts for 1 out of every 4 of Medicare dollars. But only 
approximately 1 percent of that $40,000,000,000, less than 3 
percent of the NIH budget, is spent on diabetes research.
    To put this in perspective, diabetes kills twice as many 
people each year as breast cancer and AIDS combined. Yet 
diabetes receives less than 1/7th of the research dollars 
devoted to those two diseases.
    The last decade has been nothing short of a disaster for 
diabetes research. While the NIH budget increased by more than 
100 percent, funding for diabetes research increased by only 35 
percent. Now, Mr. Chairman, because this was less than the rate 
of inflation for biomedical research, funding for diabetes 
research is actually worse off now than it was a decade ago.
    If funding for diabetes research had only kept pace with 
the growth of the overall NIH budget, nearly $1,000,000,000 
more would have been devoted to diabetes research over the past 
decade; and although this is a time of extraordinary 
opportunity for diabetes research, the sad fact is that many 
researchers have left the field because of a lack of adequate 
funding.
    The recently released report of the congressionally 
established Diabetes Research Working Group characterizes the 
government's commitment to diabetes research as, in its words, 
trivial. Why is this so? I think there are many reasons, 
perhaps among them because diabetes reeks its havoc slowly over 
years and decades, rather than immediately. Perhaps also, Mr. 
Chairman, because the members of the diabetes community have 
been too quiet and well behaved. They haven't disrupted 
meetings with tactics like shouting and spilling blood, as 
advocates for research and other diseases have done.
    I hope we can all agree that those are not the methods that 
should dictate the biomedical research priorities for our 
country. It should be the objective standards that you have 
addressed over the years so eloquently.
    Even if you put aside the untold suffering and the 
shattered lives caused by diabetes, if you only consider the 
economic cost to our society, the dividend in saved lives and 
dollars the cure would yield makes diabetes perhaps the best 
research investment that NIH could possibly make.
    Many people look to insulin as if it were a cure. You know, 
Mr. Chairman, that it is, at best, a holding action. It is not 
a cure, and the numbers bear this out.
    On behalf of my daughter, Susan, and the more than 
16,000,000 other Americans who are at risk due to the serious 
complications that all too often occur, I ask that you 
implement the recommendations of the Diabetes Research Working 
Group. Their recommendation was that diabetes research be 
funded for the coming fiscal year at $827,000,000, rising to 
$1,017,000,000 by fiscal year 2004. And their report, compiled 
by the leading researchers in the field, not just in diabetes 
but in immunology and related disciplines, is the hard science 
upon which funding decisions should be made.
    Mr. Chairman, with adequate funding, the scourge of 
diabetes could be laid to rest within a decade. If our Nation 
can send people to the moon and bring them back safely, surely 
we can do this as well.
    To my continual amazement, through all the travails of the 
last 3 years, all the injections, all the rest, my daughter has 
never once asked why me or complained that it is not fair. But 
she does have a dream. Her dream is to be among the first 
generation of people who have had diabetes and have been cured. 
And this can truly happen, not just in some distant time but in 
the coming decade.
    I have a dream, too. My dream is that we find a cure for 
her and the millions of others in our Nation who fight the 
battle of diabetes every day, before it takes its relentless 
toll and cut shorts their lives; and we ask nothing more than 
that you and this committee follow your own objective standards 
and, based on the number of people affected and the costs to 
our society, that you devote the resources necessary to find a 
cure for diabetes that is tantalizingly within our reach.
    My daughter, Susan, has a few concluding remarks, Mr. 
Chairman.
    Ms. Sperling. Along with millions of other people, I ask 
you to give diabetes research full funding so diabetes, which 
is so close to a cure, can finally be cured.
    Mr. Sperling. Mr. Chairman, thank you very much for this 
opportunity to testify; and thank you for your commitment and 
the commitment of this committee.
    [The prepared statement of Richard Sperling follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. Well, Fred, and, Susan, you make the case very, 
very compellingly. Obviously, there is a long way to go.
    I will tell you, as I did before, that we will do the very 
best we can to move in the direction you want. Certainly, as I 
say, the presentation that you just made is a very compelling 
one; and I know that this subcommittee is committed to 
providing the maximum amount of funding.
    I personally, as you know, have an interest in this as 
well. My wife has diabetes, was diagnosed about 2 years ago. 
And I want to see Susan cured. I want to see my wife cured. I 
want to see everyone who has this terrible disease cured. And 
if money and resources and committed researchers can do it, we 
want to provide them the resources they need.
    So thank you for coming to testify. Thank you, Susan.
    Mr. Sperling. Thanks again, Mr. Chairman.
    Mr. Porter. It is good to see you both.
                              ----------                              

                                         Wednesday, April 14, 1999.

                 FRIEDREICH'S ATAXIA RESEARCH ALLIANCE


                                WITNESS

RONALD J. BARTEK, PRESIDENT
    Mr. Porter. Our next witness is Ronald J. Bartek, 
President, Friedreich's Ataxia Research Alliance.
    Mr. Bartek.
    Mr. Bartek. Thank you, Mr. Chairman. And I would like to 
thank you, the subcommittee and your staff for this Herculean 
effort of holding these hearings this week and permitting us 
all the opportunity to represent our patients, our patients' 
families, our research scientists in supporting your efforts.
    I do so first as a parent, a parent of a 13-year-old boy, 
Keith, who is afflicted with this devastating disease, 
Freidreich's ataxia; also as cofounder, along with my wife, and 
President of the Friedreich Ataxia Research Alliance, a 
nonprofit organization we established recently to help support 
the research into this disorder.
    Mr. Chairman, this is the same disease that afflicts the 
brave young woman who testified from her wheelchair yesterday, 
Erin from the Chicago area. She spoke primarily of the problems 
she has encountered in coping with this disorder in the school 
system. It is also the disease that afflicts other families 
here in the room, one of which is from Mrs. DeLauro's district; 
and Mrs. DeLauro was kind enough to meet with them yesterday.
    Like many of the diseases you were hearing about this week 
and have heard about many times before in your experience, this 
is a brutal, relentless and devastating disorder. It is a 
recessive, genetic disease. It is neurological. It is 
degenerative. The symptoms grow worse and worse as time goes 
on.
    The onset of those symptoms, unfortunately, is between the 
ages of 5 and 15 generally but quite often even earlier than 
that. The disorder has devastating impact throughout the 
system, throughout the body. It is from head to toe literally. 
It impairs vision, hearing, speech, as you could hear from 
Erin's voice yesterday. It brings on a very aggressive form of 
scoliosis, a curvature of the spine. It leads to diabetes, like 
that afflicts Susan and your wife. It also carries with it a 
very grave heart disorder which is one of the most troubling 
and devastating of its symptoms. It leads also to loss of 
muscle strength and coordination in the arms and the legs, 
which leads, like in Erin's case, to a wheelchair usually by 
the mid to late teens.
    Mr. Chairman, members of the committee, we have no 
treatment, certainly no cure for this devastating disorder. It 
therefore leads to death at an early age. Usually, our patients 
die by early adulthood.
    I will say that we are without a treatment but not without 
hope. We have tremendous hope in this community. We are one of 
the many beneficiaries, by the way, of the Decade of the Brain, 
of which you have been a champion. That decade has permitted us 
to find our gene. We did that only 3 years ago.
    I know that you are a past recipient of the Decade of the 
Brain Award; and, as such, you know full well what importance 
that gene identification carries. It has permitted us, for 
example, to determine and identify the protein that a healthy 
copy of that gene produces and an unhealthy copy doesn't. It 
has permitted us to determine that it is the mitochondria, the 
power plant of the cell, where this protein is to operate but 
not available in our patients.
    It has permitted us to determine that there is an 
overdeposit of iron in these cells, in the mitrochondria of 
these cells, and that exudate of stress or free oxygen radicals 
like in many other disorders and, in fact, in aging itself is a 
powerful factor.
    Our hope, of course, is that, having determined all of 
these factors in disease, we can approach, and we are beginning 
to approach, the point of clinical trials, and in an effort to 
identify how we might be able to show how this protein well 
functions, how we might be able to address that excessive iron 
deposit, how we might be able to chelate it or remove it, how 
we might be able to bind these free oxygen radicals, which 
obviously would be applicable across the spectrum of disease, 
or how some combination of these types of therapies might 
stall, might slow, might stop this disease, so that then we can 
follow with a very promising progress in terms of gene 
therapies or regenerative therapies that will permit us to 
restore function, to return the regenerate muscle and nerve 
fiber to restore these functions.
    Our message to you, Mr. Chairman, and the subcommittee 
today is very simple. We are very appreciative of your constant 
support. Our hope, as I have just expressed, is fully dependent 
upon that support. We are deeply grateful for your 
championship, for your leadership, and as effective as it has 
been in this effort to double the NIH budget in a 5-year 
period. We know, as you do, fully that that impact of that 
effort is already being deeply felt at the NIH and throughout 
the scientific community.
    We know, too, that funding levels because of that 
redoubling effort have gone up from 29 percent in 1998 to 35 
percent in 1999. Unfortunately, with the President's budget 
request below a 2 percent increase for this year, they would 
have to drop back to below 1998 levels, to 26 percent. No 
rocket science here. We would all suffer. Everyone before you 
this week would suffer the consequences.
    We would like to say that not only, therefore, from our 
perspective are you doing the right thing, Mr. Chairman. You 
are doing it the right way, as previous witnesses have 
testified. We think you are absolutely right in insisting that 
scientists make the scientific call, the scientificjudgment and 
that NIH refine its priorities and work with patient groups and work 
with the public to clarify those priorities.
    We would like to report, too, that we take that approach 
because we feel that a rising tide lifts all ships, that we 
will try to trim our sails to be ready to take that tide to 
sea. Our disease provides an excellent model of how that can 
work.
    We appreciate your insistence that the NIH work across 
institutional lines, work across disciplinary lines. Our 
symptoms cut across many of those institutes and many of those 
disciplines.
    The NIMDS, our principal institute, is funding an 
international scientific conference at the end of this month 
that will gather 60 of the world's leading scientific 
investigators into disease. Those participants and the funding 
is coming from places like the Office of Rare Disorders. Half 
of it comes from them. Some contributions and certainly some of 
the key participants come from the other institutes the 
Diabetes Institute, the Heart and Lung Institute, the Child and 
Health Development Institute, the Human Genome Research 
Institute.
    This is a wonderful and collaborative approach that the 
NINDS is fostering. We think your insistence has worked. They 
are operating aggressively in all of these fronts. They are 
working very embracingly with us, and we appreciate that.
    In conclusion, Mr. Chairman, we are extremely hopeful. We 
are excited. We know that that excitement and that hope depends 
on your continued support. We encourage you to preserve and 
prevail in this effort to double the NIH budget.
    We are small but increasingly active. We pledge our 
constant support in that effort. We will continue to work with 
our patient families, our scientific community, to assemble the 
science, to have our patient families contact their elected 
officials to seek their support for your efforts. We would be 
eager to hear about anything else we might be able to do in 
this regard.
    Mr. Porter. Thank you very much for your testimony Mr. 
Bartek.
    [The prepared statement of Ronald Bartek follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Ms. DeLauro. Mr. Chairman?
    Mr. Porter. Ms. DeLauro.
    Ms. DeLauro. May I make a comment?
    I want to thank you, Mr. Bartek, for your testimony and for 
just laying out what was, in fact, a goal of this committee. 
That is the utilization of the resources that the committee 
provides and the collaborative effort that then can exist at 
the NIH to bring to bear the kinds of research and the kind of 
treatments that they can discover, if you will, to address 
Friedreich's ataxia and I think other diseases.
    I think you highlighted this collaborative approach in a 
way that was very, very forceful. I was delighted to meet 
yesterday with Mary Body and with Sam and with Alex, who are 
here this morning.
    Ms. DeLauro. And you give us great hope, and you energize 
us when you talk the way you have and when you get a chance to 
meet with people like the Bodys and you understand their 
commitment and their hope with the process at the moment. So 
you have a receptive ear with this subcommittee. We will tell 
you that we will do our best so that we could help to try to 
make a difference.
    Mr. Bartek. Thank you very much, Mrs. DeLauro. We recognize 
as you do and as the full subcommittee does that we cannot come 
before you and ask that more funds be put against Friedreich's 
ataxia research. We realize it wouldn't make any sense.
    Not only does a rising tide lift tall ships, but we can't 
mandate or plan scientific breakthrough. We don't make such 
breakthrough where we plan to make it. We make it where we can. 
We hope there will be insights driven by Parkinson's and 
Huntington's that have impacts and insights for us and vice 
versa.
    Dr. Varmus testified here last year that Friedreich's 
ataxia is one of those mature bodies of research, insights in 
which can make powerful impact on the more common disorders. 
That is the approach we would like to foster.
    Mr. Porter. Thank you, Mrs. DeLauro. We appreciate that.
    Mr. Bartek, thank you very much for testifying.
    Mr. Bartek. Thank you, Mr. Chairman.
                              ----------                              

                                         Wednesday, April 14, 1999.

                    ILLINOIS COMMUNITY COLLEGE BOARD


                                WITNESS

JOSEPH J. CIPFL, PH.D., PRESIDENT AND CEO
    Mr. Porter. Our next witness is Mr. Joseph J. Cipfl, Ph.D., 
the President and CEO of the Illinois Community College Board.
    Joe, it is nice to see you.
    Mr. Cipfl. Hello, Mr. Chairman. Good morning, Chairman 
Porter and Members of the committee. I certainly want to thank 
you for giving me the opportunity to share with you at least a 
few moments this morning information to what I believe about 
one of the greatest assets of American education, and that is 
the community colleges of our nation. As president and CEO of 
the Illinois Community College Board, I am responsible for 
administering the 49 community colleges of Illinois. I would 
want to indicate to you this morning that Illinois is an 
excellent example of what is happening with the community 
colleges across this nation.
    Right now, Illinois community colleges are enrolling one 
million students on an annual basis. That is literally one out 
of 11 Illinoisians. 63 percent of the students that are 
attending Illinois public higher education today are enrolling 
in public community colleges. Another very interesting and 
vital statistic is that the average age of those students is 31 
years of age. Obviously, we are living in a technological 
revolution that is affecting the process of teaching and 
learning, and individuals are returning to our colleges in 
numbers that, a few years ago, we would never have been able to 
predict.
    When we take a look at our Nation, community colleges are 
enrolling approximately 5.4 million credit students and are 
serving approximately 5 million non-credit students. 44 percent 
of all United States undergraduates are enrolled in community 
colleges. We are, now at this point in time as we approach the 
new millennium, the largest sector of United States public 
higher education as well as Illinois public higher education.
    I want to share with you this morning that the community 
colleges not only provide the largest sector of higher ed, but 
they are the key providers necessary to maintain a skilled work 
force in our nation. According to a recent study by the 
American Society for Training and Development, by the first of 
next year, 89 percent of the jobs in the United States will 
require post-secondary levels of literacy and math skills; but 
only half the new workers coming into the work force are likely 
to have these skills. The skills-gap created by this situation 
will lead to increasing disparity in wages unless corrective 
action is literally taken now.
    Community colleges provide a credit generating work force, 
training courses, and work in hundreds of occupations.
    They also offer flexible, customized noncredit training for 
businesses, industry, and for our government. In fiscal year 
1998, business and industry centers in our Illinois community 
colleges provided customized training to 3,100 businesses. This 
is in one year. And 122,921 employees and the centers helped 
create or retain over 165,000 Illinois jobs.
    Educating and training the future work force occurs in an 
increasingly complex and constantly changing environment that 
colleges must daily adapt to. New technologies demand extensive 
training and retraining of teachers to operate and thrive in 
the classrooms of tomorrow. Community colleges are perfectly 
situated to efficiently and effectively recruit and train new 
teachers and retrain existing ones. Of students graduating from 
teacher education programs at public universities both in 
fiscal years 1997 and 1998, two-thirds each year have taken 
courses in the community colleges and 40 percent had attended a 
community college before the baccalaureate degree granting 
institution.
    I also want to indicate this morning that technology is 
allowing us to overcome the boundaries of space and time which 
limit access to education and training. Technology offers 
enhanced learning opportunities for all when it is available 
and when it is usable. In Illinois, we are implementing a 
statewide telecommunications-based, fully interactive distance 
learning system. Equipment purchases and remodeling activities 
will result in making nearly 375 individual interactive sites 
operational by the end of the current fiscal year.
    During the past year in Illinois, 800 courses with 
enrollments of seating 16,000 students were offered via 
telecommunications. Unfortunately, purchasing and operating 
costs for these systems remain high. To maximize the benefits 
achievable through distance learning and networks, higher 
education institutions also need access to the Universal 
Service Fund program. We also urge legislation to ensure that 
students who take courses through distance learning have access 
to student financial aid.
    Access to financial assistance is crucial even at community 
colleges which offer a more affordable avenue to higher 
education. In Illinois, nearly two-thirds of all minority 
students and public higher education students attend a 
community college. Illinois community colleges also annually 
serve 11,000 students with disabilities and 38,000 students 
with limited proficiency in English. Our community colleges are 
especially productive in helping those students with multiple 
barriers overcome them. Nationwide, our tuition fees are less 
than $1500 per academic year.
    Pell Grants and Hope Scholarship tax credits make the 
difference for thousands of low-income community college 
students. In Illinois, over 55,000 community college students 
received Pell Grants last year. Nationally, in 1995 and '96 
over 1.25 million community college students benefited from 
Pell Grant awards. This morning, I encourage the subcommittee 
to provide a $400 increase to the Pell Grant to the maximum 
Pell Grant.
    I also, this morning, want to urge you to fund the 
Strengthening Institutions Program. And, Congressman Porter, I 
know how supportive you have been of this undertaking. It is 
Title III of the Higher Education Act. It would return it to 
its former level of $80 million. This program works efficiently 
to assist needy institutions to serve large numbers of 
disadvantaged students. And also, I encourage the funding of 
the Carl B. Perkins Vocational and Technical Education Act, and 
this year I urge you to help even more students by adding the 
$125 million to the programs. Let institutions take advantage 
of the opportunities under the reauthorization.
    And finally and I will conclude, I encourage you to fund 
the new Child Care Access Program created by the 1998 Higher 
Education Act of 45 million. I would just simply state that 
community colleges are phenomenal educational happenings. Right 
now, I just had conversations with leadership in China wanting 
me to come there in October to talk about what community 
colleges are doing for Illinois and doing for our Nation. I 
would indicate the community colleges are not simply a place 
but rather our community colleges are a process, process by 
which we enable, we empower, we elevate, we energize and we 
equip. Thank you.
    Mr. Porter. Joe, that is a great message and the statistics 
that you cite are just phenomenal. I had some idea but nothing 
as large an impact as community colleges are having on our 
educational system. It is just incredible, particularly in 
Illinois, I guess.
    Mr. Cipfl. The individuals coming to our college, the 
average age is 31. I was walking down one of my colleges, and I 
heard a voice behind me say, Hey, sonny. Been a few years since 
I have been called sonny. She said to me, Do you think I am too 
old to enroll in a computer class? I said, Well, dear, how old 
are you. She said, I am 92 years of age. I got her enrolled. I 
want you to know she is doing pretty well too.
    Mr. Porter. That is great. Nice to see you. Thank you so 
much.
    [The prepared statement of Joseph Cipfl follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

                                         Wednesday, April 14, 1999.

             ILLINOIS AREA HEALTH EDUCATION CENTERS PROGRAM


                                WITNESS

RICHARD A. WANSLEY, PH.D., EXECUTIVE DIRECTOR
    Mr. Porter. The next witness is Dr. Richard A. Wansley, 
Ph.D., Executive Director, the Illinois Area Health Education 
Centers Program. Dr. Wansley.
    Mr. Wansley. Thank you. Good day. I am testifying on behalf 
of my colleagues associated with Area Health Education Centers, 
AHEC programs, and Health, Education and Training Centers, 
HETCs. Currently there are 37 AHEC programs located in 41 
states with over 160 community-based centers. The mission of an 
AHEC is to improve the distribution of health care 
professionals through community academic partnerships in order 
to increase access to quality care with a particular focus on 
primary health care for underserved communities. HETCs have a 
similar mission but are uniquely centered on public health 
matters associated with extremely underserved areas within our 
country, especially areas found along our Nation's border with 
Mexico.
    AHECs play an important role in national and local 
strategies to ensure accessible quality health care for people 
in our country. The service education linkages support a 
variety of interventions. These strategies include community-
based training for health profession students and medical 
residents with a special emphasis on clinical education sites 
and shortage areas and medically underserved areas.
    In Chicago, our AHEC manages a community medicine clerkship 
for over 200 medical students each year and provided over 4,000 
weeks of clinical education of community sites for around 750 
other health profession students and medical residents last 
year. One of those clinical education sites is Haymarket Center 
that was represented by testimony earlier this morning. The 
Florida AHEC, a larger and older model program, coordinates 
over 900,000 hours of health profession student training each 
year.
    AHECs also developed health careers for recruitment 
programs and underserved rural and urban areas focusing on 
minority and other populations underrepresented in the health 
professions. Our program administers the national award-winning 
Chicago Health Corps/AmeriCorps project where corps members 
commit to a full year of service in community health. Since the 
beginning of the project, about 80 percent of former members 
have pursued a health professions education.
    A South Texas AHEC program has conducted health career 
awareness and preparatory programs for over 30,000 elementary, 
middle, and high school youth, and college undergraduates. Our 
programs facilitate continuing professional education and 
develop the skills of clinical preceptors who practice in 
remote areas in our states.
    The Pennsylvania AHEC carried out continuing education for 
over 4,900 primary health care professionals last year. Our 
Illinois program partnered with NIH, CDC, FDA and the Chronic 
Fatigue and Immune Dysfunction Syndrome Association of America 
to expand the satellite broadcast audience of primary care 
providers who learned about management of chronic fatigue. 
There are over a thousand participants associated with 75 AHEC 
downlink sites located across the nation for this program.
    AHECs promote improvements in health care and other 
strategies to prevent disease through special projects and 
community workforce planning and policy analysis. In Illinois, 
we sponsor a health profession student project that aims to 
increase the percentage of Asian American children who are 
immunized against hepatitis B infection.
    As to health policy and workforce planning, AHEC staff 
members around the nation serve on local and statewide policy 
related committees and task forces that are designed to improve 
health in their communities. For example, I chair the Illinois 
Primary Care Medical Education Advisory Committee, an 
organization established by the Illinois general assembly, that 
reports on policy-related recommendations to the general 
assembly and the governor.
    The fiscal characteristics of AHEC projects are such that 
there is a substantial contribution of non-Federal matching 
funds. Indeed, one of the great successes of this Federal 
initiative has been its ability to financially sustain itself 
without depending entirely on Federal funds. Federal funds help 
leverage financial support from sources that include the public 
sector such as state, county, and city government as well as 
private funders such as local and national foundations.
    Our current estimate is that for every one dollar invested 
by the Federal Government, the national AHEC programs raise 
another eight dollars in support. We believe that it is 
essential that the national AHEC program and HETCs be able to 
continue their support for education programs that help improve 
health care for people who have the greatest need for services. 
Given the outstanding progress of our programs over past years, 
we urge you, Mr. Chairman, to increase the current annual 
appropriation of $29.5 million for AHECs and $3.8 million for 
HETCs by at least four percent.
    In the Health Professions Act of 1998, Congress indicated 
that every state should have an AHEC program. My colleagues and 
I estimate that meeting this goal and sustaining the commitment 
to maintain model AHECs and HETCs would require appropriation 
of $50 million. However, a four percent increase would permit 
continuation of the current basic AHECs and HETCs as well as 
limited growth of new projects in new states or areas of 
states. Mr. Porter, I thank you for your consistent support 
over the years, and I would be happy to respond to any 
questions or comments. Thank you.
    Mr. Porter.  Thank you, Dr. Wansley.
    [The prepared statement of Richard Wansley follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter.  What does the President's budget have?
    Mr. Wansley. The current budget?
    Mr. Porter. Yes, the current and the proposed.
    Mr. Wansley. I am not sure what the proposed budget is.
    Mr. Porter. I can find it. I thought you might know that.
    Mr. Wansley. No, I don't know.
    Mr. Porter. Is there an importance to physical location of 
the centers?
    Mr. Wansley. Is there an importance to the physical 
locations?
    Mr. Porter. Yes.
    Mr. Wansley. The locations of the centers themselves are 
predominantly administrative offices for the education 
programs.
    Mr. Porter. There really isn't any significance to where 
they might be located?
    Mr. Wansley. Not particularly. They do need, however, to 
have a consistent involvement with the community that they are 
impacting in their areas through the purposes of an advisory 
committee as well.
    Mr. Porter. You have educated us all a great deal on AHECs 
and we appreciate your coming to testify and we will obviously 
do our best to respond. Thank you.
                              ----------                              

                                         Wednesday, April 14, 1999.

                 INFECTIOUS DISEASES SOCIETY OF AMERICA


                                WITNESS

DR. JOHN G. BARTLETT, M.D., PRESIDENT
    Mr. Porter. Dr. John G. Bartlett, M.D., president, 
Infectious Diseases Society of America.
    Dr. Bartlett. Congressman Porter, Members of the 
subcommittee, the Infectious Disease Society represents about 
5,000 doctors and scientists devoted to patient care, 
education, research, and community health in the field of 
infectious diseases. We appreciate the opportunity to appear 
before your committee.
    I would like to talk about infectious diseases. It is a 
field that is quite deceptive and, in many ways, unique 
compared to other disciplines in medicine. For example, despite 
impressions to the contrary, infectious diseases are actually 
increasing as a cause of death in the United States. Secondly, 
infectious diseases are the most unpredictable discipline in 
medicine, and third, infections may occur in explosive fashion 
over large areas involving millions of people.
    Let me expand on these points. First, the progress in 
infectious diseases over the years has been substantial. The 
diseases at the turn of the century are no longer problems. And 
this is due to the results of having vaccines and antibiotics 
and gumshoe public health efforts. Nevertheless, despite those 
remarkable accomplishments earlier, there has been an increase 
in deaths ascribed to infectious disease from 1980 to the 
present. The increase in mortality is about 60 percent due to 
infectious disease. And at present, the infectious disease 
represents the largest cause of death in the world, and the 
third leading cause of death in the United States. And these 
numbers seem to be getting worse rather than better.
    The second point I made is infectious diseases are turning 
out to be major causes of conditions that are traditionally not 
thought to be infection. For example, studies in the past year 
have shown that Helicobacteria bacteria, a bacterium, is a 
major cause or the only cause of stomach ulcers. It is now 
believed that hepatitis C rivals alcoholism as the major cause 
of cirrhosis in the United States and that hepatitis B is the 
major cause of cancer in the world.
    There are now at least six viruses known to cause cancer. 
New information about a bacterium called chlamydia pneumonuiae 
suggested it may cause cardiovascular disease and further 
suggests the very provocative possibility that antibiotics 
would prevent heart attacks.
    Many of us feel that medicine is evolving in a fashion 
which nearly all disease is either infectious disease, 
genetics, or bad luck. So if you get hit by a bus, that is bad 
luck, but everything else would possibly be either genetic or 
infectious.
    The third point is that infectious diseases can cause 
explosive morbidity and mortality, and these events are largely 
predictable. We know, for example, that the major pandemic of 
influenza is likely to return. It will be a new strain, one in 
which the population has no immunity and it could be like 
Spanish flu of 1918, Asian flu of 1957, or Hong Kong flu of 
1968. Remember, in 1918 the average age of death was 34, and 
the average length of life decreased 11 years as a result of 
that epidemic.
    It must be remembered that epidemics of infectious diseases 
at any place in the world are likely to have a direct impact on 
the United States due to international travel, and as we speak 
right now, there is a new strain of influenza just discovered 
which is called H9N2 in two children in Hong Kong and a 
mysterious viral infection that has killed over a hundred in 
Malaysia.
    So how is our country prepared to deal with these problems? 
Well, CDC and National Institute on Allergy and Infectious 
Disease have been, and will continue to be, our major resources 
for dealing with infectious diseases. These two agencies have a 
somewhat different mission. The CDC represents the world's most 
renowned organization for epidemiologic investigation, disease 
control, and policy formulation. This is generally viewed as 
the agency with the greatest experience, resources, facilities, 
and technical know-how of any public health institution in the 
world. They respond to a diverse array of public health threats 
that may occur any time at any place.
    The NIH and specifically NIAID, the Institute of Allergy 
and Infectious Diseases, serves a different function. It is an 
agency that is largely responsible for orchestrating our 
efforts in scientific discovery and the training of future 
scientists in the field.
    In preparing for this testimony, I counted 21 new microbes 
that have been discovered in the past 25 years and found that 
at least 17 were by NIAID or CDC funded investigators. I am not 
talking about weird things. I am talking about common and 
important diseases such as Borrelia burgdorferi, the cause of 
Lyme disease; or chlamydia pneumoniae, a very important cause 
of pneumonia and possibly cardiovascular; hepatitis C 
bartonella, cause of cat scratch disease; legionella, cause of 
Legionnaires disease; a virus that causes Kaposi sarcoma, the 
most common tumor in patients with AIDS; and the most common 
form of diarrhea that we recognize at the present time.
    Then once these new bugs are discovered, there is usually a 
rather predictable cascade of events. I described the clinical 
problem and then you get a diagnostic test and then you have 
the evolution of methods to deal effectively with the problem 
here with antibiotics or vaccines.
    So let me finish by mentioning the really hot spots 
ininfectious disease at the present time. Bioterrorism is one. We 
support the proposed expansion of responsibilities for the CDC and NIH, 
but we want to emphasize the need for funding that will build public-
private partnership. So in the event of an Anthrax attack, for example, 
the first responders are going to be physicians in practice and local 
laboratories, and we will use private hospitals. This type of attack is 
likely to require medical care for hundreds or thousands and 
prophylactic antibiotics for tens of thousands or possibly hundreds or 
even millions. The major resource for dealing with medical care of this 
magnitude is, by necessity, primarily from the private sector. So what 
we would emphasize is that meaningful preparations for bioterrorism 
must include incentives to involve the private sector including the use 
of professional societies such as mine, the IDSA.
    Another hot spot is antimicrobial resistance. Many of the 
bacteria that were easily treated 20 or 30 years ago are now 
becoming therapeutic challenges due to resistance, a scenario 
that has gotten a lot of press. It is probably the price of 
progress, but it also represents a problem in what many of us 
perceive as abuse of antibiotics in both patients and industry.
    Mr. Porter. Dr. Bartlett, I have to ask you to conclude 
your statement, please.
    Dr. Bartlett. Okay. The only other category in which I 
would like to emphasize as a hot spot would be in the area of 
vaccine which has been the source of remarkable progress in the 
past, and in aids for HIV infection which is now obviously a 
very important content area. So what I want to say in 
conclusion is that we have tried to summarize the issues on 
infectious disease and would like to emphasize the need in 
future planning to take advantage of our lessons from history. 
We know that infectious diseases are absolutely unpredictable. 
They are potentially devastating and very important. Thank you. 
I would be glad to answer questions.
    Mr. Porter. Thank you, Dr. Bartlett.
    [The prepared statement of Dr. John Bartlett, M.D., 
follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. Let me ask one question. I think you said the 
mortality increase from 1980 is 60 percent?
    Dr. Bartlett. Mortality increase ascribed to infectious 
diseases has increased by 60 percent.
    Mr. Porter. That is worldwide?
    Dr. Bartlett. No, that is in the United States.
    Mr. Porter. What would be the principal causes of mortality 
in the United States? Let's say three diseases?
    Dr. Bartlett. The major three would be AIDS, pneumonia, and 
something we call sepsis which is a bacteria in the 
bloodstream. All three are major causes of increase in 
mortality.
    Mr. Porter. Well, this is a very, very important subject 
obviously. We very much appreciate your coming to testify and 
to educate us, Dr. Bartlett. We certainly will do the best to 
provide funding in the areas that you have mentioned. Thank you 
so much.
    Dr. Bartlett. Thank you.
    Mr. Porter. The subcommittee will now stand in recess for a 
vote.
    [Recess.]
                              ----------                              

                                         Wednesday, April 14, 1999.

         INTERSTATE CONFERENCE OF EMPLOYMENT SECURITY AGENCIES


                                WITNESS

JOSEPH WEISENBURGER, PRESIDENT
    Mr. Porter. The subcommittee will come to order. We 
continue our public witnesses with Joseph Weisenburger, 
President of Interstate Conference of Employment Security 
Agencies. Mr. Weisenburger.
    Mr. Weisenburger. Good morning, Mr. Chairman, committee 
Members. My name is Joe Weisenburger. I am the Deputy 
Commissioner of the New Hampshire Department of Employment 
Security and president of the Interstate Conference of 
Employment Security Agencies, a national association of the 50 
State employment security agencies that run this nation's 
unemployment insurance programs and public employment service. 
Thank you for the opportunity today to provide our view.
    This is a very dynamic economy that we are in right now. 
Most people would think that employment is very stable, but in 
fact employment is not particularly stable. This year 16.7 
million American workers, one out of every seven American 
workers, filed a claim form for employment benefits. The number 
of employers that support the unemployment insurance system and 
the public employment services has grown to six and a half 
million employers, those who pay taxes to support the system. 
The workload for the system has been consistently high.
    This year's appropriation, the one we are operating under 
right now, as determined by the U.S. Department of Labor is 
$360 million short of what is necessary to run our programs 
under today's workload. The President's budget for the next 
year freezes the unemployment insurance program at the same 
level. That means that States will now have to absorb cost-of-
living increases for salaries and benefit increases, high cost 
of technology and the overhead costs within that limited budget 
without any assistance from our Federal partner. This is going 
to only exacerbate the problems that we have in administering 
our programs. We are concerned that the foundation for the 
unemployment insurance program is eroding and that we will not 
be prepared when this country falls into a recession.
    At the same time in the President's budget, he requests $40 
million, a one-time appropriation to improve the wage records 
of the unemployment insurance program. There is nothing wrong 
with the wage records in the unemployment insurance program. 
This is a process to improve the wage records for use by the 
Social Security Administration and by the Department of Health 
and Human Services and its child support enforcement division. 
We think it is inappropriate to use fewer dollars, those paid 
by employers dedicated to the employment security system, to go 
to supporting another program at the same time that our 
programs are hurting for resources. So we request that you 
would divert that $40 million to the base funding for the State 
programs to providea very modest cost-of-living increase for 
the States.
    In the President's budget, he also included $71 million for 
integrity programs. Those are activities that the states have 
let slide because we have been underfunded, and it is very 
important that those programs be maintained, so we support the 
President's initiative to reestablish the integrity programs in 
the unemployment insurance program. And we urge you to support 
the President's request there.
    Regarding the public employment service, it too is very 
busy. This year 18 million workers, one out of every seven 
American workers, registered for work with the public 
employment service. Three million found jobs as a result of 
that service. This means that 15 million American workers left 
our system without a positive outcome. Our budget has been 
frozen for the last five years. The States have again had to 
absorb the cost of living and cut back on services.
    The public employment service is a revenue generator for 
the Federal Government. Every time we place somebody into a 
job, that individual is paying Federal and State taxes. In many 
cases, it cuts back on benefit outlays such as unemployment 
benefits, food stamp payments, or welfare recipiency so we know 
the public employment service is a good investment. 
Additionally, in the Workforce Investment Act that the Congress 
passed last year, the Department of Labor and we agree that the 
employment service is the glue that will hold this one-stop 
workforce development system together, a Congress-envisioned 
collaboration partnership leveraging resources down to the 
local levels. Without a strong public employment service, that 
partnership is going to be very difficult to maintain. We urge 
an increase to the allocation for the public employment service 
from $761 million to $811 million so that the employment 
service can play its role in these one-stop systems.
    In the President's budget, he also includes $53 million 
targeted to reemployment services for UI claimants. This is a 
very important proposal, and we support it very strongly. It 
means that we will be able to focus on UI claimants, getting 
them back to work more quickly, saving employer tax dollars, 
and saving trust fund revenues. So we strongly urge you to 
support the President's request for $53 million for the public 
employment service.
    Finally, I would like to talk just a moment about the 
government performance and review. I hear the buzzer, I will 
stop now and respect your request to keep within five minutes.
    Mr. Porter. Mr. Weisenburger, thank you for your testimony. 
Very impressive. You didn't use a single note. Went right 
through it. I am going to withhold questions because we are so 
far behind our scheduled time, but let me thank all the 
witnesses who have appeared and thank you for your testimony 
today.
    Mr. Weisenburger. Thank you.
    [The prepared statement of Joseph Weisenburger follows:]

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                                         Wednesday, April 14, 1999.

                          NEW YORK UNIVERSITY


                                WITNESS

PETER LENNIE, PH.D., DEAN FOR SCIENCE, PROFESSOR OF NEURAL SCIENCE
    Mr. Porter. Next is Dr. Peter Lennie, Ph.D., Dean for 
science, Professor of neural science at New York University. 
Dr. Lennie.
    Mr. Lennie. Thank you, Mr. Chairman. I am speaking on 
behalf of New York University as its dean for science. I 
appreciate this opportunity to discuss a project that will 
enhance national welfare by advancing the scientific 
understanding of the brain, its development, and activity.
    I would like to thank the committee for its willingness to 
support basic research. In particular, we applaud the 
committee's previously stated support of, and I quote, 
``research in the area of brain development, mechanisms that 
underlie learning and memory, the acquisition and storage of 
information in the nervous system, and the neuroprocesses 
underlying emotional memories as they relate to the 
intellectual development and cognitive growth.'' This is an 
area of exceptional significance, indeed, one in which NYU has 
great strength; and I thank the subcommittee for supporting the 
research being conducted in this field.
    I would like to say a little bit about investments in 
research that will greatly increase our understanding of how 
the brain matures and functions. At NYU, we are promoting such 
research by establishing a center for cognition, learning, 
emotion, and memory studies. To establish this center, NYU 
seeks support to expand its working cognitive science, visual 
science, computational neural science, and related programs. We 
seek to attract investigators from the range of contributing 
disciplines and to provide the technical resources needed to 
create a world-class scientific enterprise.
    Research in our center will substantially increase what we 
know about the neural mechanisms that underlie aspects of human 
behavior that are important for education, health services, and 
labor training and deployment. Researchers at the center will 
examine newer mechanisms of learning and memory. They will 
probe fear and its impact on learning and performance and they 
will study perception and information processing in the brain. 
There are enormous potential applications for early childhood 
intervention, teacher training, educational technologies, job 
training and retraining, and diagnosis and treatment of mental 
and memory disorders.
    I would like to offer you some examples. The center's 
research will help us better understand how children learn at 
different stages with different cognitive styles and how 
parents and teachers can accommodate these styles to stimulate 
interest and increase retention. The research need is clear. 
Many educational reforms are being introduced without an 
advantage of the understanding of the fundamental processes 
that lead to learning.
    Second, our research in the cognitive processes that affect 
attention and memory are important implications for adult 
learning as well. One productive focus is in learning 
technologies that can help us to design job training programs 
and can rationalize the way we train new workers or retrain 
workers in emerging occupations and technologies.
    Third, our research in biomedical and behavioral research 
can lead to advances in health and well-being. As an example, 
the center will explore how memory is altered by aging and how 
biologic malfunctions in the emotional system can cause 
disorders like phobias, panic attacks, and post-traumatic 
stress.
    Our research in the newer biology of fear will help us 
understand the source of fear and other emotions, why they are 
hard to control, and ultimately whether the unconscious neural 
circuitry of emotions can be altered or inhibited.
    Many of the studies to be undertaken in our center have a 
common focus in the changes in the nervous system that occur 
when we remember new things or learn new skills. Understanding 
these changes is essential to understanding and improving the 
flexibility of human behavior. If we understand this 
flexibility and harness it, we can work better and learn better 
even as we age. These are issues that resonate broadly with the 
American public and capture its attention and support. For 
example, the cover story of the New York Times magazine of 
February 28 of this year was entitled ``The Anatomy of Fear'' 
and featured investigators at NYU who were characterizing 
anxiety in the brain and learning how these problems can be 
treated.
    NYU is particularly well positioned to create and operate 
this major cross-disciplinary research and training center. As 
the largest private university in the Nation, NYU has 
outstanding researchers and major strengths in the disciplines 
that need to be brought together to tackle these complex 
problems. We have a powerful presence in neural biology, 
cognitive science, behavioral science, educational psychology, 
mathematical modeling, and computer simulation. We are in a 
special position to harness these strengths to attack major 
issues in cognition, learning, emotion and memory and to 
successfully meet our national goals and this committee's 
priorities.
    Mr. Chairman, this concludes my testimony. I thank you for 
the opportunity to appear before you today.
    Mr. Porter. Thank you very much for your testimony. We 
appreciate it.
    [The prepared statement of Peter Lennie follows:]

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                                         Wednesday, April 14, 1999.

         NORTH AMERICAN SOCIETY OF PACING AND ELECTROPHYSIOLOGY


                                WITNESS

DAVID HAYES, MD, PRESIDENT
    Mr. Porter. Our next witness is Dr. David Hayes, M.D., 
President of the North American Society of Pacing and 
Electrophysiology. I had to put my glasses on to read that.
    Dr. Hayes. Chairman Porter, my name is David Hayes. I am a 
cardiologist and vice chairman of cardiology at the Mayo Clinic 
in Rochester, Minnesota and president of the North American 
Society of Pacing and Electrophysiology, or NASPE. NASPE is an 
organization of physicians, scientists, and allied health 
professionals that are dedicated to the study and management of 
cardiac rhythm disturbances and to improving the care of 
patients by promoting research, education, and training. NASPE 
appreciates the opportunity to appear before this committee.
    First, we would like to thank the chairman and Members of 
the subcommittee for its dedication and support for the NIH and 
specifically for the National, Heart, Lung and Blood Institute. 
Research including clinical trials funded by the NHLBI 
translate into better care for our patients. As a very timely 
example, the clinical community was recently provided with 
results from the Multicenter Unsustained Tachycardia Trial or 
the MUSTT trial which was an NIH funded study. This important 
study concluded that implantable defibrillators resulted in a 
reduced death rate for patients with cardiac arrest over drugs 
alone.
    In recent decades, we witnessed remarkable advances in 
technology that have allowed new and successful therapeutic 
approaches for patients with cardiac rhythm disturbances. These 
life-saving treatments and devices have been based on years of 
NIH funded research as well as industry-sponsored research. 
Patients with diagnosed cardiac rhythm disorders often undergo 
device implantation. For example, a pace maker is used 
predominantly for the treatment of slow heart rhythms and a 
defibrillator is used for rapid, potentially life threatening, 
rhythm disturbances. The defibrillator then shocks the heart 
back into a regular rhythm.
    Other treatment strategies have emerged such as ablation 
therapy, where specific areas of the electrical system of the 
heart are targeted with a catheter and the abnormal portion of 
the heart is altered so that the patient is no longer bothered 
by abnormal rhythm. However, our field is still relatively new 
and based on research that continues to evolve. As we approach 
the new millennium, the potential to improve both the quality 
and length of life of our citizens is enormous.
    However, the aging population will pose unique challenges. 
For example, currently it is estimated that at least 4 percent 
of Americans over the age of 65 develop atrial fibrillation. 
When this room is full, at least two people in this room, 
statistically speaking, would develop that rhythm disturbance. 
And as the population ages, the incidence will only go up. 
Atrial fibrillation is a heart rhythm disorder where the normal 
control mechanism of the heart is lost and the upper chambers 
of the heart literally quiver. When they do that, the blood 
isn't moved through the heart on a regular basis. The patient 
suffers from a rapid irregular heart beat and also is at risk 
for a stroke because of potential clotting within the upper 
chambers of the heart.
    As you noted in last year's House report language, this 
occurs in 2 million Americans, causing 90,000 strokes per year. 
It became common knowledge to many people when former President 
Bush was diagnosed with peroxisomal atrial fibrillation. And 
according to what was released to the press, President Bush 
appeared to have a form of this that was relatively easy to 
manage. However, hundreds of thousands of Americans require 
recurrent hospitalizations for this problem from the drugs used 
to treat atrial fibrillation or from a stroke secondary to 
atrial fibrillation. NIH-sponsored research will lead to new 
treatments for this disabling, and often deadly, heart rhythm 
disorder.
    Similarly, sudden cardiac death is a major problem and 
refers quite simply to a sudden lethal heart rhythm 
disturbance. Responsible for over 300,000 deaths a year, and 
possibly as many as 500,000 deaths per year, this problem is 
obviously a major priority force. And, again, statistically 
speaking, with this room filled, one person statistically would 
be at risk for sudden cardiac death.
    It is not just the older population. We hear this most in 
high-profile cases of athletes. Even though we have some 
limited treatment methods for such attacks, what we really need 
is a way to prevent the deadly lethal rhythm disturbances in 
the first place. Many of these answers might be found in 
molecular or genetic research, but we are truly in the infancy 
of the research. One of the goals of NHLBI research is to be 
able to identify and target the patient at risk for sudden 
cardiac death and discover treatments to prevent its 
occurrence. At this point, most victims of sudden cardiac death 
do not have any signs or symptoms identifying them as being at 
high risk before the event occurs.
    It is difficult, if not impossible, to place a dollar value 
on research and disease prevention when one thinks of it in 
terms of quality of life and pain and suffering. But research 
will help us to determine how best to manage the individual 
patient in an effort to avoid the disease in the first place 
and the subsequent outlay of dollars required for management of 
the rhythm disturbance once it manifests. The necessary 
research requires more funding than what has been available. 
NASPE is most appreciative of Congress's historic support of 
the NIH and NHLBI and urges Congress to continue its commitment 
to doubling the NIH budget over the next four to five years and 
hopefully an incremental increase over this. Thank you very 
much.
    Mr. Porter. Dr. Hayes, thank you very much. I have 
questions, but I am going to restrain myself because we are on 
such a tight schedule. Thank you for coming to appear.
    [The prepared statement of Dr. David Hayes, MD., follows:]

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                                         Wednesday, April 14, 1999.

               ORGANIZATIONS OF ACADEMIC FAMILY MEDICINE


                                WITNESS

JOHN DICKINSON, M.D., CHAIRMAN OF THE DEPARTMENT OF FAMILY MEDICINE, 
    UNIVERSITY OF ROCHESTER SCHOOL OF MEDICINE AND DENTISTRY
    Mr. Porter. Dr. John Dickinson, M.D., Chairman of the 
Department of Family Medicine, University of Rochester School 
of Medicine and Dentistry, testifying on behalf of 
Organizations of Academic Family Medicine. Is that correct?
    Dr. Dickinson. Yes, sir. Thank you, Mr. Chairman. I am Dr. 
John Dickinson, family physician, chairman of the Department of 
Family Medicine, as you mentioned, and president of the 
Association of Departments of Family Medicine. I am grateful 
for this information to discuss two programs of great 
importance to the Organization of Academic Family Medicine. 
First, I would highlight the need for increased fiscal Year 
2000 appropriations for health professions training. 
Specifically, we support 133 million for the primary care 
medicine and dentistry cluster under title 7 of the Public 
Health Service Act, of which 87 million is needed for family 
medicine. Second, we recommend 225 million for the Agency for 
Health Care Policy and Research, of which at least 25 million 
should be directed to the Center for Primary Care research.
    We understand the difficult decisions you face this year 
given budget restrictions. We hope that as the year progresses 
the situation may change, that you will be able to support 
these programs fully as you have in the past.
    Let me illustrate how family medicine programs have met 
Congressionally-mandated goals. In fiscal year '99, 29 
residency training programs were funded under title 7 at family 
medicine. All 29 met the statutory preference for underserved 
populations. Outcome data show that 42 percent of graduates of 
title 7 funded family medicine programs enter practice in 
medically underserved and rural areas.
    Only a few years ago, 20 American medical schools had no 
departments of family medicine at all. With the help of Title 7 
funds, 12 have recently established such departments. Clerkship 
experiences in family medicine are key determinants of medical 
students' decisions to enter primary care. Title 7 projects and 
predoctoral education effectively help many departments, 
including my own, to establish such clerkships.
    In Rochester, we place 70 percent of our students among 
rural and underserved populations. One such clerkship in 
Northeastern Pennsylvania convinced me to enter family 
medicine. Faculty development projects have improved both the 
quality and the reception of new teachers in our training 
programs. Seventy-six percent of faculty trainees in one study 
remained in faculty positions and half of these in medically 
underserved communities.
    Why are additional resources needed? We know that effective 
health care delivery for all Americans requires a strong 
primary care foundation, particularly in family medicine; yet 
many of our departments are in their infancy, others in 
adolescence. Most remain vulnerable politically and financially 
and require continued support to reach full maturity in an 
extremely competitive environment.
    Several critical next steps relate directly to the Title 7 
programs. First is the development of a functional research 
infrastructure which is needed to address a host of troublesome 
questions about the efficiency and effectiveness of primary 
health care delivery. Second is to expand our exposure to 
medical students who complain that their family medicine 
experiences are too brief at four to six weeks, compared to the 
eight to 12 weeks in other specialities. Third, we must expand 
further our capacity to prepare future family physicians for 
practice in rural and underserved areas. In the current cycle, 
we were unable to fund 44 qualified training projects that met 
the underserved preference. Fourth is to train new faculty 
teachers and investigators to fill hundreds of vacant faculty 
positions nationwide, particularly for programs, again, in 
underserved and rural communities.
    Turning a moment to research, as a Nation, we invest wisely 
in the basic medical sciences, with the fiscal year '99 NIH 
budget over $15 billion. But these bold programs offer few 
opportunities to address questions of concern to primary care 
physicians or to develop primary care applications for new 
basic science discoveries. By current estimates, family 
physician investigators account for only $18.6 million 
annually. Yet these are the same physicians who provide the 
majority of health care contacts with the American people.
    We believe that the primary care research requires an equal 
place within the mainstream of the Federal scientific 
enterprise and that the new center for primary care research 
within AHCPR is a suitable home. If adequately funded, the 
centers programs will provide the Nation with invaluable 
information with which to control health care costs and to 
reduce morbidity and mortality, but it must be allowed to grow 
at a pace with other research initiatives. Our departments of 
family medicine are fully committed to the development of 
research infrastructure and eager to undertake challenging 
questions that are before us. We remain deeply concerned about 
the meager funding that persists for AHCPR and for its primary 
care initiatives.
    To summarize, we sincerely appreciate the efforts of this 
committee last year and hope that you can increase your support 
for these vital programs in fiscal year 2000 and beyond.
    Mr. Porter. Thank you very much, Dr. Dickinson, for your 
testimony. We appreciate your taking your time to come.
    Dr. Dickinson. Thank you, sir.
    [The prepared statement of Dr. John Dickinson, M.D., 
follows:]

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                                         Wednesday, April 14, 1999.

                        ONCOLOGY NURSING SOCIETY


                                WITNESS

LINDA U. KREBS, RN, PH.D., AOCN, PRESIDENT
    Mr. Porter. Dr. Linda U. Krebs, R.N., Ph.D., AOCN, 
president, Oncology Nursing Society.
    Ms. Krebs. Good afternoon. I am Linda Krebs. I am Assistant 
Professor of nursing at the University of Colorado School of 
Nursing and president of the Oncology Nursing Society, also 
known as the ONS.
    The ONS is a professional organization of more than 27,000 
nurses who are dedicated to the care of individuals with 
cancer. Our mission is to promote excellence in oncology 
nursing and quality cancer care. I want to thank the 
subcommittee for the opportunity to speak before you today.
    I wish to focus my comments on three specific areas: first, 
on recent changes in oncology care and needed resource dollars 
for oncology nurses; the second, funding for nursing research; 
and, third, funding for the education of advanced-practice 
nurses.
    As oncology nurses, we have a lot of things to be proud of. 
Despite this, we are gravely concerned about some of the 
changes that are occurring today. The future of oncology 
nursing is being threatened as never before and will affect the 
quality of care that individuals with cancer receive. This must 
not be allowed to happen.
    Funding for specialty nursing education and nursing 
research have reached a crisis point. Unless sufficient 
financial resources are available, quality cancer care will 
diminish and individuals with cancer will not receive the 
quality care they deserve and they need.
    First, I want to focus on oncology nursing at the bedside. 
Last year on the mall in front of the Capitol, thousands of 
cancer survivors and family members focused their attention to 
the site of Capitol Hill, while listening to politicians 
promise their support to rid our nation of cancer. Part of the 
war on cancer can be won by providing nurses who are the 
frontline caretakers of individuals with cancer, the needed 
resources to become competent cancer care providers.
    To assure quality, cancer care must be delivered by 
competent, educated, and certified oncology nurses, not just 
any nurse. This is really crucial. Right now specialty nursing, 
such as oncology, is being phased out; and oncology nurses are 
increasingly being told to generalize. Additionally, oncology 
units in hospitals and other places where patients are taken 
care of are seen in many instances as unnecessary and also are 
being phased out.
    The oncology units that are left are forced to decrease 
their nurse-patient ratios, leaving nurses harried and rushed 
and with little time to provide emotional support, patient 
education, and efforts to promote quality of life. These 
changes in the lack of funding for specialty nursing, including 
oncology nursing, hurt patients in the quality of care 
delivered.
    Second, I wish to focus on funding for nursing research. 
Oncology Nursing Society supports an increase of 20.4 million 
for the National Institute for Nursing Research, increasing 
NINR's budget to 90.253 million for fiscal year 2000.
    Currently, NINR has the lowest funding base at NIH and is 
funded for fiscal year '99 at 69.82 million. This funding was 
only a 10 percent increase over prior years. This is 
particularly concerning, for NINR is one of only two NIH 
institutions since 1995 to receive growing numbers of research 
proposals. And, indeed, NINR has projected that we will only be 
able to fund 19 percent of all the proposals that come forward 
to them. That is as opposed to NIH predicted averages of 33 
percent. NINR carries out the largest number of research 
initiatives, examining pain control and care for the terminally 
ill; and NINR has been designated as a lead institute at NIH to 
coordinate research on end-of-life care. NINR has already made 
significant inroads in identifying pain-reducing drugs that 
work better for women. Without adequate funding, this level of 
accomplishment will be diminished.
    A particular area where nursing research funds have the 
potential to make a significant impact is in lung cancer, 
particularly lung cancer in women, since this disease is now 
the leading cause of cancer death in all women. Nursing 
research into the best methods to manage lung cancer side 
effects, including fatigue, decreased appetite and associated 
weight loss, could decrease the burden on patients and families 
and improve quality of life and potentially impact survival. 
Vital patient oncology research cannot occur without sufficient 
funding.
    Third, I want to focus on education for advanced practice 
nurses. APNs manage the daily needs of individuals with cancer, 
educate patients about treatment, perform needed tests on 
advanced oncology research. Often they provide care in rural 
and medically underserved areas that lack other health care 
providers.
    Advance practice nurses will be needed on an increasing 
basis in our evolving health care system. Adequate funding for 
nurses seeking advanced degrees must be available, as they are 
essential for quality cancer care and the general health care 
of this country.
    In conclusion, I ask each of you to think of the 
individuals that you know with cancer. Many of those 
individuals will live with cancer for many years, while others 
will die from disease. Oncology nurses can and do make a 
difference in the lives and death of these individuals. You can 
assure that nurses at the bedside who care for these people 
provide quality cancer care and assist individuals experiencing 
cancer with quality of life and you can send a message to 
health care providers about the importance of oncology nursing.
    Finally, you have the ability to assure that nurses have 
available funding sources so they can retain advanced degrees 
and provide the care that people need. We thank you for this 
opportunity.
    Mr. Porter. Dr. Krebs, thank you very much for coming to 
testify today.
    [The prepared statement of Linda Krebs follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. I want each of the last five witnesses to 
realize that, although we didn't have time for questions, we 
will take their concerns into account as much as any of our 
other witnesses.
    The staff now wants to make an announcement, or have me 
make an announcement. I am going to recess the hearing for a 
brief period. As you know, Christopher Reeve is our next 
witness, and he is accompanied by a number of individuals who 
are in wheelchairs. I would ask the members of the audience if 
you are planning to stay for Mr. Reeve's testimony, please 
remain in your seats. If you are planning to leave, however, 
please exit the room through the rear door on my left and exit 
to the hall through the subcommittee offices. As you can 
imagine we need to keep the main entrance door clear for the 
next witness and those accompanying him. The subcommittee will 
stand briefly in recess.
    [Recess.]
                              ----------                              

                                          Wednesday, April 14, 1999

                      CHRISTOPHER REEVE FOUNDATION


                                WITNESS

CHRISTOPHER REEVE, PRESIDENT
    Mr. Porter. The subcommittee will come to order. Our next 
witness is Christopher Reeve, the President of the Christopher 
Reeve Foundation. And Mr. Reeve, we admire the courage and 
determination that you have shown in the face of the very 
serious injuries that you have sustained. It is an inspiration 
to all of us, and we very much appreciate your taking the great 
effort that it requires for you to come here and to testify 
this morning. It is actually this afternoon. Thank you very 
much. Please proceed. Mr. Hoyer.
    Mr. Hoyer. Mr. Chairman, if I can just briefly in joining 
you in welcoming Christopher Reeve, a man of courage and a man 
of vision to our hearing room. I was talking to him a little 
earlier. He is, of course, one of the best known actors that we 
have in America and, therefore, in the world. It is he who 
appeared in a movie called ``Superman,'' and Superman was 
physically, incredibly able and indestructible. Christopher 
Reeve found, as all of us know, that we are not indestructible, 
that we are subject to the vagaries of fate; but what we found 
in Christopher Reeve, it was not that his body was so strong, 
but that his will and his courage was so immense and to that 
extent he is a superman; and I want to take this opportunity, 
as you did, to thank him for what he is doing for millions of 
people throughout this world, not only who suffer or have had 
spinal cord injuries but the disability community generally. He 
talked about some 50-plus million Americans who have 
disabilities, not exactly like his but who are also challenged. 
And he has raised sensitivity and consciousness in our country 
and throughout the world and, Mr. Reeve, we welcome you and we 
thank you for your leadership and all that you are doing, and 
we look forward to your testimony.
    Mr. Reeve. Thank you very much. Congressman Hoyer and 
Congressman Porter, I would like to submit the formal testimony 
that you have received for the record. Mr. Chairman, committee 
Members, in 1913 a great Spanish neuroscientist, Santiago Ramon 
Y Cajal, concluded a treatise entitled ``Degeneration and 
Regeneration of the Nervous System'' by declaring, quote, ``In 
adult centers, the nerve paths are something fixed, ended, 
immutable. Everything may die. Nothing may be regenerated.''
    In the October 1988 correction, in the 1998 issue of Brain 
Work, a leading journal of neuroscience, researchers stated, 
quote, ``In spinal cord injury fatalism is finished, replaced 
by the certainty that scientists will find ways to help spinal 
cord victims recover.''
    We live in a time when the words impossible and unsolvable 
are no longer part of the scientific community's vocabulary. 
Each day we move closer to trials that will not just minimize 
the symptoms of disease and injury but eliminate them. You have 
heard from the directors of the NIH over the past few weeks of 
new medical interventions that will end epilepsy, Alzheimer's, 
Parkinson's, the devastating effects of stroke, chronic pain, 
organ rejection after transplantation. You have listened as the 
directors have outlined the details of an HIV vaccine, dramatic 
improvements in the effective treatment of drug addiction, 
mouse models that accurately reproduce human cancers in order 
to prevent early detection and interventions, and, of course, 
the miraculous mapping and sequencing of the human genome which 
is already changing the world of medicine and medical research. 
The rapid pace of these advances is occurring because you, the 
Congress of the United States and our President, had the vision 
in 1998 to increase funding for the NIH by 15 percent, and this 
momentum must not be slowed.
    Our government may operate under a budget that is decided 
from year to year. Our scientists cannot. New scientific 
initiatives, experiments, and laboratories across the United 
States, once nurtured and financed, operate on two- and three- 
and four-year plans, but we must not fund our scientists who 
have the potential to alleviate enormous suffering without 
giving them the assurance that we will not put on the brakes 
and stop the flow of dollars that will make their progress 
possible. And I quote from just two of the best investigators 
in the field, quote, ``Researchers are forced to fight for 
funds sufficient to continue their work; and if this pattern 
continues, whole segments of scientific and medical research in 
the United States could disappear'' That comes from Lorne 
Mendell, president of the Society of Neuroscience. And another 
quote, ``So much has been learned in just the last few years 
with the help of increased NIH funding. Whether effective 
treatments are found in 3 versus 30 years makes a world of 
difference to people affected by diseases of the brain and 
spinal cord.'' And that is from Dennis Choi, who is the 
president-elect of the Society of Neuroscience.
    I represent nearly 400,000 spinal cord-injured Americans 
and millions more around the world who now have a legitimate 
reason to believe that the day will come when they will rise 
out of these wheelchairs. Scientists are successfully exploring 
one of the last great mysteries of medicine, the frontier of 
inner space, the diseases of the brain and the central nervous 
system.
    And when I speak across the country, I ask stadiums full of 
Americans for a show of hands if their lives have been affected 
by Alzheimer's or stroke, ALS, MS, Parkinson's or spinal cord 
injury. Time and time again I look out onto a sea of raised 
hands.
    The life expectancy of Americans has practically doubled 
over the course of the last century, but we here today have the 
responsibility to ensure that those added years are onesof 
quality and productivity, not pain and suffering.
    I am privileged to communicate on a regular basis with 
scientists across our country and around the world. I recently 
spoke with Dr. Martin Schwab at the University of Zurich and 
Dr. Angela Vescovi at the National Neurological Institute in 
Milan. Dr. Schwab has developed a protein inhibitor that allows 
regeneration of nerves in the spinal cord. Dr. Vescovi has made 
a ground-breaking discovery regarding epidemal stem cells. 
These are undifferentiated cells whose primary function is the 
formation of the fetus during gestation. The common wisdom had 
always been that these cells are not present and in the adult 
mammal, but they've been found to exist in the ventricles of 
the brain and the spinal cord; and Dr. Vescovi has discovered 
that these cells are also found in the skin, so that thousands 
of these cells could be biopsied from the patient's skin and 
grown in the laboratory; and when injected into the site of the 
lesion in the cord, they are capable of becoming neurons and 
axons necessary to bridge the gap across the injury; and 
because only eight to ten percent of nerves in the cord are 
needed for sensation and motor function, it seems likely that 
an adequate number of appropriate connections will make the 
bridging technique successful; and because this therapy uses 
cells from the patient's own body, there is no question of 
toxicity or rejection by the autoimmune system.
    I asked Dr. Schwab and Dr. Vescovi if a lack of proper 
funding was impeding their progress. The answer from both of 
them was no, because Italy and Switzerland are funding basic 
science at the appropriate levels.
    The same week I spoke with these European researchers, I 
was honored to receive the first addition of a book edited by 
Dr. Mark Tuszynski of UC San Diego, a book entitled ``CNS 
Regeneration.'' This is the first textbook of its kind and one 
that could not have been written as recently as five years ago; 
but in a letter that accompanied the text, Dr. Tuszynski 
tempered his excitement about the extraordinarily rapid 
progress in the field with a plea for increased funding. 
Without your support, spinal cord victims will continue to sit 
in wheelchairs draining the resources of insurance companies as 
well as Medicaid, Medicare, V.A. Hospitals and nursing homes; 
but with your continued support, it is very possible that 
within the next three to five years people who are now 
afflicted with a wide variety of disabilities will be able to 
overcome them. They will regain their rightful place in society 
to rejoin the work force and at last be relieved of the 
suffering they and their families have had to endure. So the 
plea for adequate funding cannot be ignored.
    Now, some Members have expressed concern that researchers 
can't absorb a further increase in the budget.
    And I wish to express my opposition to that point of view. 
Evidence to the contrary is overwhelming. Over the last few 
years, the NIH has only been able to fund 22 percent of grant 
applications that have met the high standards of the evaluation 
process. Thousands of equally worthwhile proposals have been 
turned down because of budget constraints, including some of 
the most innovative ideas coming from young post docs and 
graduate students.
    This has led to an alarming conservatism in the funding of 
research. With an appropriate increase in the budget, the 
United States would be able to keep pace with foreign 
investigators who have the resources to conduct truly cutting 
edge experiments.
    In all my discussions with American scientists, I have 
asked them to estimate when human trials might begin. 
Unfortunately, I always get the same answer: it all depends on 
money.
    In 1961, President Kennedy presented a seemingly impossible 
challenge: to land a man on the moon and bring him safely back 
to earth and to accomplish it by the end of the decade. 
Scientists and technicians across the country shook their heads 
in disbelief because the technology was not yet available to 
accomplish this task. But with resources from the government, 
the support of the private sector, and the hard work of the 
over 400,000 Americans, we realized that vision.
    The Members of the subcommittee, you have brought us 
tantalizingly close to the moon's surface. Please give us the 
resources to enable us to make a safe landing and then bring us 
home. I urge you and your colleagues to pass a 15 percent 
increase in the budget of the National Institutes of Health for 
the fiscal year 2000.
    Thank you very much, and I would be pleased to answer any 
questions.
    [The prepared statement of Christopher Reeve follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. Mr. Reeve, thank you for your outstanding 
statement, what you said at the beginning about the impossible 
no longer being impossible, it is exactly right. What we hear 
from we listen to the NIH Directors, and next week we are going 
to have 56, including Dr. Varmus, Noble Laureates before the 
subcommittee. We understand the opportunities that have been 
opened through medical research and the need for additional 
resources to make those possibilities become realities. And 
regarding spinal cord research, again you are exactly correct, 
the possibilities were unimaginable very recently and now are 
very imaginable and, in fact, looking increasingly very 
possible.
    Congress initiated the effort to double funding for NIH and 
biomedical research last year. With the 15 percent downpayment 
it is unfortunate, and I know my Democratic colleagues agree 
with this that the President's budget reflects only about a 1.4 
percent increase, all of us in the Congress find that 
absolutely unacceptable. That is not going to occur. What we 
are going to do is to provide the maximum amount of resources 
that we possibly can, and, hopefully, and with your help, 
provide an additional 15 percent that I think will get us over 
the hump and well on our way to achieving the doubling over a 
5-year period.
    Your advocacy is making a tremendous difference. We often 
think that public policy is simply made by 535-elected 
representatives in Washington, but most Americans really 
realize deep in their hearts that they are the ones that make 
the public policy; and if they will let their voices be heard, 
they will be listened to.
    Your advocacy is generating the kind of support that we 
need to hear in Washington for doubling the budget for NIH over 
5 years. And so we ask your continuing help. You are already 
way out front, and doing exactly what I think needs to be done, 
but your continuing help will get us where we want to go. And 
together we will look forward to the time when you and others 
like you who have experienced such devastating injuries will 
leave the wheelchair and stand again, and be your normal 
selves.
    I think that, in fact, is within reach if only we will make 
the commitment to achieve it. And we thank you for coming here 
today and inspiring us in the way you are inspiring so many 
people across our country, making a difference and making 
happen what can happen. Mr. Hoyer.
    Mr. Hoyer. Mr. Chairman, thank you very much. Mr. Reeve, I 
agree with the Chairman, it was a compelling statement. And 
your courage is compelling. You and I discussed the passage of 
the Americans with Disabilities Act. It passed, not so much 
because those of us in the Congress advocated for it, it passed 
because Americans with various different kinds of disabilities 
came to the Congress and said we can do a lotof things, give us 
the opportunity to do it.
    And as I listened to your testimony, I thought to myself, 
what a compelling example you are serving for so many and the 
hope that you are giving to so many. And as you made the 
analogy to President Kennedy's commitment to get to the moon 
within the decade of the '60s, I was a young man and very taken 
with President Kennedy. As a matter of fact, got into politics 
because I was inspired by President Kennedy, and that was a 
major facet of the '60s. And the hope that we had that we could 
do something, as you point out, that was said to be impossible.
    But as I thought about it, as well, and I understand Neil 
Armstrong just spoke and a number of the astronauts spoke 
because of the anniversary, we look forward to you taking one 
small step for Christopher Reeve, which will be a giant step 
for mankind. That analogy of a small step for Neil Armstrong 
was a small step, and he had all the abilities to take that 
small step.
    When you take that step, it will be a giant step, not just 
for you, but for millions and millions of people currently 
suffering from a fateful accident, and raising their hands and 
stating in stadiums all over the world, yes, I know myself, my 
brother, my sister, my husband, my wife, my friend, my 
neighbor, my classmate, I know somebody who has been struck 
down by fate.
    John Kennedy, when he was speaking about some young people 
with mental disabilities, made a statement that I think is very 
apropos here. He said, ``Although these children are the 
victims of fate, they will not be the victims of our neglect.''
    I can tell you that Chairman Porter has been as strong a 
leader in the Congress of the United States as I have seen on 
behalf of NIH, on behalf of funding to make the breakthroughs 
that will make such a vast difference for individuals but, as 
importantly, for all the rest of us who will be advantaged by 
the empowering of those individuals to reach their full 
potentials.
    And I thank you for coming. I know obviously there are, I 
am sure, hundreds of groups, individuals who want you to appear 
someplace. And you can't possibly respond to them all. We have 
some small appreciation of that, but not on the magnitude that 
you confront. And you agreed to come, I will guarantee you that 
your statement will be known, made known to, not only the 
Members of this subcommittee, but all the members of the Senate 
subcommittee as well, as we focus on the adoption of the NIH 
budget for the next year and for the five years succeeding.
    Mr. Chairman, I want to thank you as well for your 
leadership on NIH funding, both on specifics and on general 
impact, because you are making a difference as well.
    Thank you very much, Mr. Reeve, for being with us today.
    Mr. Reeve. Thank you.
    Mr. Porter. Thank you, Mr. Hoyer. Let me thank, Mr. Reeve, 
and all the witnesses who have appeared before the subcommittee 
today. The subcommittee stands in recess until 2:00 p.m.
    Mr. Reeve. Thank you.
    [Recess.]
                              ----------                              

                                         Wednesday, April 14, 1999.

                    FLORIDA DEPARTMENT OF EDUCATION


                                WITNESS

TOM GALLAGHER, FLORIDA'S COMMISSIONER OF EDUCATION
    Mr. Porter. The subcommittee will come to order.
    We continue our hearings with public witnesses with our 
fourth panel of 10 panels or 200 witnesses that we have 
scheduled. And we are very pleased that the Chairman of the 
Appropriations Committee could be with us at the opening of 
this session to introduce Tom Gallagher, the Commissioner of 
Education of the State of Florida.
    Mr. Chairman, it is a real pleasure to have you here, and 
why don't you proceed in any way you wish.
    Mr. Young. Chairman Porter, thank you very much. And I want 
to compliment you for the way you have expedited the work of 
your subcommittee this year as we prepare to do our 
appropriations in a timely fashion this year. And we certainly 
appreciate the invitation to Commissioner Gallagher to be here.
    He has an outstanding record of public service in our great 
State of Florida. Mr. Gallagher and I both served in the 
Florida legislature many years ago, longer ago than either one 
of us likes to remember probably. He established a great record 
of public service and eventually became our commissioner, our 
State treasurer, and commissioner of insurance. He did an 
outstanding job there and has since become the commissioner of 
education in a very competitive political campaign statewide in 
which the opposition barely showed up on the polls.
    So he does have a good record of public service, especially 
in the field of education. And I am just really proud to have 
him here today and to present him to you as your first witness 
this afternoon.
    Mr. Porter. Thank you, Mr. Chairman. We are very pleased 
that you could come and join us on the subcommittee for this 
witness. And Mr. Gallagher, it is a pleasure to welcome you. 
Why don't you proceed with your statement and then we will see 
if we can ask some questions.
    Mr. Gallagher. Thank you, Mr. Chairman. Thank you Chairman 
Young, I certainly appreciate you taking time out to come down 
and introduce me. And also I want to thank you, Mr. Chairman 
Porter, for inviting Florida to be represented here today.
    The issue we are discussing is very important to Florida. 
And I certainly commend you, Mr. Chairman, for your leadership 
in education reform. As the largest Federal program for 
elementary and secondary education, the Elementary and 
Secondary Education Act provides critical funding for the 
states. With the ESEA up for reauthorization, it is imperative 
that states are treated fairly.
    Florida has specific objectives for the reauthorization. 
And they are: a more equitable share of the fundings in all 
programs, especially Title I and Title VII 
(bilingualeducation), and greater flexibility to realize program goals. 
Because Florida serves so many students who are identified as IDEA and/
or Title I, it is incumbent upon us to point out our concerns.
    Fairly fund bilingual education. The state is concerned 
that Florida is not receiving its proportionate share of Title 
VII funds for bilingual education. Florida has the fourth 
largest population of students with limited English 
proficiency, but ranks 7th in receipt of Title VII funds. 
Florida should not be penalized because it emphasizes the 
teaching of required English skills as an addition to the 
student's native language.
    Streamline classification of migrant children. We in 
Florida would like to see the costly and cumbersome process of 
classifying children as migrants for the purpose of receiving 
Federal funding streamlined. Count all students benefiting from 
50 percent threshold for schoolwide programs. Florida agrees 
with the 50 percent threshold for schoolwide programs in the 
current law, which permits schools with 50 percent poor 
children to use Title I funds in combination with other 
Federal, State and local funds to upgrade the instructional 
program for the entire school. We suggest that all children 
benefiting from these programs be counted in the formula for 
the generation of the funds.
    The enormous costs associated with implementing the 
individuals with Disabilities and Education Act and the 
increased burden on Florida. In 1975, the Federal Government 
committed to fund 40 percent of the costs for Education and 
Handicapped Act, now known as the IDEA. IDEA requires that 
services be provided to individuals with disabilities, age 3 to 
21. In Florida, 334,896 students with disabilities were served 
for a total cost of over $2.8 billion in '97 '98. Of this, the 
Federal contribution was 227 million or 11 percent.
    In order to meet the costs of implementing IDEA, Florida is 
reallocating existing State funds from some other programs, 
including educational programs, and committing new funds to 
ensure that students with disabilities receive a free and 
appropriate public education as required by law.
    These enormous costs are placing an increased burden on 
Florida. This burden may be exacerbated by the U.S. Supreme 
Court decision in Cedar Rapids Community School District v. 
Garret F, Case No. 96-1793 of March 3, 1999, which held that 
IDEA required a school district to provide nursing services for 
a ventilator-dependent student during school hours.
    Other State concerns include increased paperwork, 
inequities in student discipline policies, and overly 
prescriptive regulations associated with the 1997 
reauthorization of IDEA. Our office constantly hears from 
teachers, school administrators, parents and lay citizens about 
how much paperwork is related to IDEA and the dual system of 
discipline that students identified as ESE received. We simply 
must find a way to resolve these two issues.
    Florida currently is in the process of adopting the most 
sweeping educational reform package in history. Governor Bush's 
A+ Plan has passed the State house and is being debated in the 
Senate as I give this testimony. We believe that the measures 
the plan embraces, coupled with the Federal initiatives of 
Title I and IDEA, will help us deliver the kind of educational 
opportunities students need and deserve so they may compete in 
the world market.
    I thank you for the opportunity to share Florida's concern 
with this esteemed body.
    [The prepared statement of Tom Gallagher follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. Mr. Gallagher, thank you for your statement. We 
consider education and technology together to be the future of 
our country, and we place education at a very high priority. I 
think it is wonderful you came here to testify, because it 
gives me a chance to lobby my Chairman who is not just an ex 
officio member but a longtime member of this subcommittee and 
the one who is going to make the budget allocations within the 
next week or so. And, Bill, I want to take care of all the 
priorities Mr. Gallagher mentioned, if you will only give me 
the funds to do it.
    Mr. Gallagher. How long do we wait for the answer, Mr. 
Chairman?
    Mr. Young. Well, Mr. Chairman, thank you very much. And I 
appreciate those comments, and, you know, we have both worked 
on this subcommittee for such a long time. You know that I 
share those concerns, and we are going to do everything 
possible we can to meet the requirements of health, education 
and all the other issues that this subcommittee has 
responsibility for.
    I would have to tell you, Tom, that Mr. Porter is an 
outstanding chairman, he brings to the floor a very well-
thought out bill, one that has gone through the rigors of the 
members of the committee and you might suspect they have a lot 
of different viewpoints and philosophies represented. And John 
does a very good job of managing this bill and making sure that 
it works.
    And, Mr. Chairman, I will just say that, as you know, when 
we do the 302 B allocations, we will do the very best we can.
    Mr. Porter. Can I take that as a promise? Thank you, Bill.
    Mr. Young. Yes.
    Mr. Porter. Thank you very much, Bill, I appreciate that.
    And, Mr. Gallagher, thank you for coming to testify.
    Mr. Gallagher. Thank you, Mr. Chairman.
    Mr. Porter. We appreciate it very, very much.
    Mr. Gallagher. I appreciate the opportunity.
    Mr. Porter. Thank you.
    Before I recognize the next panel, I want to tell everyone 
who is here that this is the fourth of 10 panels of about 20 
witnesses each that will testify during our public witness 
portion of our hearings; that means 200 witnesses. And we must 
strictly enforce the 5-minute rule that we allow each witness 
to testify for 5 minutes. There is a clock up here that rings 
at the end of 5 minutes.
    We ask that you obviously complete your thought if you are 
in midsentence, but wind up as quickly as you can after the 5 
minutes and that will allow us to respect the time of all of 
those who follow you.
                                         Wednesday, April 14, 1999.

                  SPINA BIFIDA ASSOCIATION OF AMERICA


                                WITNESS

BARBARA J. EASTERLING, DIRECTOR, BOARD OF DIRECTORS
    Mr. Porter. Now, the next witness is Barbara J. Easterling, 
Director, Board of Directors, of the Spina Bifida Association 
of America.
    Ms. Easterling. Let me correct that, Mr. Chairman.
    Mr. Porter. That is fine.
    Ms. Easterling. I am Barbara Easterling, and I am the 
secretary-treasurer of the Communications Workers of America, 
but I am not here today on behalf of CWA, but rather on behalf 
of Spina Bifida Association of America of which I am a member 
of their national board of directors.
    I would like to thank the members of the subcommittee for 
allowing us, SBAA, to present testimony. Through the 
appropriation of funds for spina bifida, research will provide 
a vehicle to greatly improve the health and welfare of most 
persons with spina bifida, the number one most frequently 
occurring of permanently disabling birth defects in our Nation 
today.
    Spina bifida is a devastating birth defect and it affects 
approximately 1 out of every 1,000 newborns in the United 
States. And it results from the failure of the spine to close 
during the first month of pregnancy. More children have spina 
bifida than muscular dystrophy and cystic fibrosis combined. 
The average lifetime medical costs for a person with spina 
bifida is $535,000; however, the cost in many cases exceeds 
$1.2 million.
    Why has spina bifida received so little research attention? 
The SBAA believes that one reason is that the growing number of 
persons with spina bifida and the unchanged frequency of 
occurrences just now is being recognized in our Nation. Prior 
to the early '70s, a majority of babies born with spina bifida 
died. Presently, 85 percent to 90 percent of the babies born 
with spina bifida survive to adulthood, and we are just now 
seeing the first generation have the ability to thrive and lead 
self-sufficient and independent lives.
    SBAA is requesting the subcommittee to consider two areas 
of funding. The first is to support an NIH consensus 
conference, and the second is to appropriate additional funding 
to CDC. On the NIH consensus conference, as I stated 
previously, we are now seeing the first generation of persons 
with spina bifida grow into adulthood. Their care is an 
emerging health discipline, but the roadmap is unclear and the 
sign posts are few.
    A review of the literature provides minimal information 
about aging issues, secondary conditions, the impact of 
commonly practiced interventions over a lifetime, and evidence 
of which protocols are successful. With the exception of $8.9 
million in fiscal year '99 at NICHD and NINDS, very little is 
being done to discover strategies to promote health and 
wellness for persons with spina bifida.
    The questions are many and the answers are few. The history 
is spotty; the treatment, trial and error. Persons with spina 
bifida need your help to evaluate the minimal scientific data 
and develop a plan for action that will improve the quality of 
life for the over 70,000 persons with spina bifida.
    A NIH consensus conference would accomplish the following: 
Identifying and evaluate the existing scientific data regarding 
spina bifida and develop a plan that prioritizes the research 
and identifies early intervention research strategies and 
treatment protocols. And I respectfully ask for your support to 
increase the CDC budget for folic acid awareness, and this is a 
very important point.
    And to this point, my testimony has focused on persons with 
spina bifida, but what I find so incredible is that we have the 
means to prevent the occurrence of spina bifida by up to 75 
percent if the U.S. Public Health Service recommendation that 
all women of child bearing age consume 0.4 milligrams of folic 
acid, a B vitamin, daily prior to becoming pregnant were 
followed.
    A recent Gallop organization from a grant from CDC revealed 
the following, only 13 percent of those surveyed knew that 
folic acid would prevent spina bifida, and only 7 percent knew 
that folic acid needs to be taken daily before pregnancy, sadly 
the epidemic and, yes, we see it as that as a epidemic with 
thousands of spina bifida births per year, 12 births per day, 
the epidemic of folic-acid-preventable spina bifida continues 
essentially on unabated.
    SBAA is requesting the subcommittee to increase the 
existing 1.5 CDC folic acid awareness budget to $20 million. 
Compared to the average medical costs, and the medical costs 
only, of $535,000 per each person with spina bifida, the 
current budget figure pales embarrassingly.
    In conclusion, spina bifida and many Americans find it very 
difficult to pronounce, but many, many more Americans do not 
realize the population of persons with spina bifida is growing 
and aging. They are not aware of the depth of spina bifida's 
lifelong medical odyssey. These are the reasons that come 
before you today. These are the situations we cannot ignore.
    An NIH consensus conference will begin the process of 
improving the quality of life for the tens of thousands of 
persons with spina bifida. Greater support of folic acid 
education and awareness efforts through an increase in CDC 
funding will benefit countless numbers of yet to be born 
Americans. I cannot think of a more meaningful request, and I 
am honored to make it. I, of course, would like to express our 
appreciation to the subcommittee for giving me and SBAA the 
opportunity to come before you today and extend our sincere 
gratitude for your consideration. Thank you.
    [The prepared statement of Barbara J. Easterling follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. Ms. Easterling, I have been exploring for some 
time the use of particularly television to reach people with 
public service messages, information they ought to know. It 
does no good for us to uncover truths like folic acids prevents 
spina bifida if people don't get it in their heads and act on 
it. And it seems to me that we have a very powerful medium in 
television. We might have another in the Internet, but we 
clearly have it in television.
    And if we can I would like to see the networks and others 
who use our public airwaves do this on a voluntary basis; I 
don't see that likely to happen, unfortunately. And I would 
like to provide some funding so that CDC can get on the air 
with a message in the time when the audience is there to 
receive it. It would cost some money, but I think it might do a 
world of good to prevent the kinds of preventable diseases, 
like this one, that we know the answer to eliminating this 
disease, all we have to do is get people to understand it and 
act upon it.
    Ms. Easterling. Yes, very definitely. It just seems so, you 
know, so foolish that we could prevent 75 percent of the births 
if we could just get that message out.
    Mr. Porter. In the meantime we also have to, as you point 
out so directly in your testimony provide for those who have 
the disease, we will do our best.
    Thank you for testifying.
    Ms. Easterling. Thank you.
    Ms. Lowey. Mr. Chairman.
    Mr. Porter. Ms. Lowey.
    Ms. Lowey. Mr. Chairman, I just wanted to associate myself 
with your remarks and thank Ms. Easterling and those who are 
accompaning her for appearing before us. It seems to me, once 
again, you have laid out the facts so clearly that an 
investment of dollars, not only saves pain and suffering, but 
saves dollars. And I just hope we can work to convince those 
who can make it possible to get that investment in public 
messages, public education so that we can prevent the suffering 
and save the dollars which you wisely pointed out. And I thank 
you for your outstanding presentation today.
    Ms. Easterling. Thank you very much.
    Ms. Lowey. Thank you.
    Mr. Porter. Thank you, Ms. Lowey.
                              ----------                              

                                         Wednesday, April 14, 1999.

                      LUPUS FOUNDATION OF AMERICA


                                WITNESS

VAN TERRY BELL, CHAIRMAN OF THE BOARD
    Mr. Porter. I am going to take the prerogative of the Chair 
to go out of order, because we have a Member who is scheduled, 
who is very busy, here to introduce one of our witnesses. And 
so I am going to call on Van Terry Bell, the chairman of the 
Board of the Lupus Foundation of America accompanied by 
Congresswoman Carrie Meek of Florida, a Member of the 
Appropriations Committee. And, Carrie, we are delighted to see 
you and thank you for being with us.
    Mrs. Meek. Thank you, Mr. Chairman.
    Mr. Porter. And you proceed in any way you wish.
    Mrs. Meek. Mr. Chairman, I am here to say thank you to you 
and members of this committee, each year I appear before you 
for a very worthy cause and each year, you respond, and we want 
to thank you.
    Today I have with me Mr. Terry Bell, and I want you to get 
a good look at Mr. Bell. He is a very outstanding person. He is 
here to respond to this urgent need of having continued 
research monies and treatment monies for Lupus, one of the most 
devastating diseases in the history of health and medical 
resources in this country. Mr. Bell is sort of unique in this, 
Mr. Chairman, and Members of the committee, in that he has been 
on the front line of this fight against lupus.
    And we are in a war, Mr. Chairman, this is just a most 
extraordinary disease that this committee has ever listened to. 
And we are continuing, and we are sort of doubling our fights 
now. And we have a man who has been forced to take early 
retirement because of this devastating disease.
    And to me he is a great American and a man who has 
sacrificed for his country. He is retired from the Department 
of Defense, and he has dedicated all of his time and energy to 
volunteering for the Lupus Foundation of America. It is a 
foundation that has its efforts to fight and kill this 
devastating disease.
    He served at both National and local levels of the National 
Lupus Foundation, two terms as president of the Utah chapter. 
So he is here today, now in his capacity as president of the 
National Lupus Foundation. He has been there since 1996. He is, 
perhaps, the best person to explain to the subcommittee and 
anyone who is listening of the devastating effects of lupus.
    And I am pleased to be here today to introduce Mr. Bell and 
to say to you to please do as you have always done, you know 
when I come, I ask for money, Mr. Chairman, and that is why I 
am here, to ask for money, for research, for the lupus, which 
is a very devastating disease.
    And I thank you, Mr. Bell, for giving of your time.
    Mr. Bell. Well I would like to thank Representative Meek. 
Representative Meek has been a very good friend to the Lupus 
Foundation and to our cause. She has been our champion for a 
number of years now, and we appreciate everything that she does 
for us, as well as all of the other members of Congress.
    Mr. Chairman and Members of the committee, I am very 
grateful that you have asked me to testify today. I am Van 
Terry Bell, chairman of the board of directors of the Lupus 
Foundation of America. The Lupus Foundation of America 
represents the 1.4 million Americans who suffer from lupus 
erythematosus, an incurable, widespread and often very 
devastating autoimmune disease.
    As Representative Meek said, I am one of the people that is 
afflicted by lupus, and I do receive services from our 
organization. I would like to thank Chairman Porter and the 
members of the subcommittee for the 15 percent increase that 
was given to the National Institutes of Health last year. Even 
at these increased levels, however, many promising studies 
continue to go unfunded. And I would like to ask the 
subcommittee today to keep the NIH budget on track to double 
over the next 5 years.
    The Federal Government really doesn't have a grasp on how 
much it currently spends on direct outlays to provide services 
to people with lupus. The Lupus Foundation of America estimates 
that the Federal Government spends several billions annually 
just to provide disability income paymentsto people who are 
disabled from lupus. This doesn't take into account Medicare, Medicaid, 
and it really doesn't take into account the personal devastation that 
people suffer as a result of having lupus. Lupus is an autoimmune 
disease that causes the immune system to become overactive and attack 
the body's own tissues and organs.
    Researchers recognize lupus as the prototypical autoimmune 
disease. Lupus and other autoimmune diseases are the fourth 
leading cause of disability in women. At the present time, 
there is no cure for lupus, and researchers really don't fully 
understand what causes the disease. We still don't know why 
lupus alternates between periods of remission and flares. We 
don't know why one person might have a mild case of lupus while 
other people might have a very life threatening case that would 
cause death.
    What we do know, Mr. Chairman, is that lupus, even mild 
lupus, devastates its victims and has a very, very significant 
impact on the family. The divorce rate among people with lupus 
is twice that of the National average. 90 percent of its 
victims are women. Lupus is 2 or 3 times more likely to affect 
African Americans, Hispanics, Asians, certain North America 
Indian tribes than Caucasian women. Lupus also appears to be 
more serious in African American women. We don't know why lupus 
seems to have a greater impact on women of color. And we feel 
more research must be initiated to answer these very, very 
important questions.
    I began to develop symptoms in 1983. Over the next 12 
months, my health continued to decline. I first had intense 
joint pain, arthritis, and overwhelming fatigue, a fatigue to 
this day that I cannot put into words. I couldn't go to my 
children's soccer games and other outdoor activities without 
getting a rash, becoming ill, and having to spend a couple of 
days in bed. I started having fevers almost every day, then 
they were every day. Then I began to have chest pains and 
difficulty breathing.
    Tests revealed that I had pericarditis, an inflammation of 
the sacs surrounding the heart; pleurisy, an inflammation of 
the lungs; and endocarditis, which, very simply put, is a 
buildup of plaque around the valves of the heart which can be 
very, very serious. After a year of seeing several doctors, 
undergoing countless medical tests, spending thousands and 
thousands of dollars and getting many false diagnoses, I 
received a diagnosis of lupus.
    I have been hospitalized approximately 15 times in the past 
16 years for lupus-related problems. On one of these occasions, 
I was very, very ill and very easily could have died. I now 
have chronic progressive lung disease as a result of having 
lupus. And the drugs I have to take are so toxic I have to take 
still more drugs to offset their side effects, and I am not 
unique in that regard. I take Prednisone, an immunosuppressant 
to suppress my immune system and to control the inflammation. I 
take Voltaren and cataflam, both of those are nonsteroidal 
drugs to help with arthritic and muscle pain. I take zocor, to 
lower my cholesterol elevated as a result of taking Prednisone.
    I take Zoloft an antidepressant. The lupus disease itself 
causes depression so does taking Prednisone. I take oxycontin, 
which was a very powerful narcotic, to help with the pain in my 
spine that is due, in part, to use of long-term steroids. And I 
take Zantac to control the effects on my stomach of all of the 
medications that I just mentioned to you.
    There are too many young women in this country, Mr. 
Chairman, and young men being diagnosed with lupus in their 20s 
and 30s and dying in their 30s and 40s from heart disease as a 
result of the medications that they are required to take.
    As you can see, Mr. Chairman, lupus is not an easy disease 
to treat, diagnosis is even more difficult to live with. We 
desperately need to find better therapies and a cure. I urge 
Congress to double the NIH funding over the next 5 years. There 
are many current scientific studies that already exist for 
studying lupus. They are studies that offer hope of finding a 
cure. Annual funding is needed to bring lupus-related research 
to a sufficient level to solve the urgent health problems that 
exist so that I and the 1.4 million Americans like me don't 
have to live in pain, don't have to suffer, and don't have to 
live with the fear of dying.
    I would like to thank you for inviting us here today to 
testify for you, and I would be glad to answer any questions.
    [The prepared statement of Van Terry Bell follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. Mr. Bell, one hardly knows what to say in 
response to the health problems that you have experienced. I am 
familiar with some of the drugs you mentioned, Prednisone for 
one. And I know how powerful they are and what kind of effects 
they can have on you as side effects to what they help with.
    Do we have any indication, is there an indication that 
this--there may be environmental causes for this disease or do 
we have just very little idea?
    Mr. Bell. Well, it seems that there is an external trigger 
along with other things that cause lupus. We are now looking 
into--the chairman of our medical counsel is on a task force, 
it is actually, I believe, the worldwide task force that is 
looking into the environmental triggers of lupus and whether 
they can be--we know that stress causes lupus, external stress.
    Many women are often diagnosed shortly after pregnancy, 
which is definitely a stress on the body, but they are looking 
into chemical, as well as other environmental triggers, to 
trigger lupus.
    Mr. Porter. We are going to have a special hearing after 
our hearings are completed, our regular hearings are completed, 
and going to focus on environmental health concerns, 
particularly as they relate to children. Obviously, we want to 
do what you are asking us to do.
    We managed to increase biomedical research funding by 15 
percent last year, that cannot be an isolated incident. If we 
go back down to the figures, for example, contained in the 
President's budget, we will drive people out of research who 
ought to be attracted to research.
    We have got to continue to keep the commitment through the 
entire five-year period and double NIH over a five-year period. 
And I know Congresswoman Meek is committed to that as I am.
    Mrs. Meek. Yes, yes.
    Mr. Porter. And obviously money is needed for lupus 
research. And when you hear that a disease, we don't know the 
cause of it and we don't have any means of, except for very 
powerful drugs that have their own effects, for alleviating the 
symptoms of it, it seems to me that we can do much better in 
terms of the discovery if we put some resources there and get 
where we want to go. So we are going to try to do what you want 
us to do. We thank you for being here to testify.
    I want to say to all the people in the room who are 
concerned about any of the subjects before our subcommittee, I 
say this often, you may think that these decisions are simply 
made by 535 of us here in Washington in the legislative branch 
of the government. They are really made by the American people, 
and to the extent that you let your voices be heard and impact 
your Members of Congress and your Senators with a message that 
this ought to be a very high priority for our country, to that 
extent, our work is made that much more easy, and we can get to 
where all of us want to go. So thank you very much.
    Mr. Bell. Thank you.
    Mrs. Meek. Thank you very much.
    Ms. Lowey. Mr. Chairman?
    Mr. Porter. Ms. Lowey.
    Ms. Lowey. I just wanted to again associate myself with our 
outstanding Chairman and thank Mrs. Meek and Mr. Bell for 
appearing before us. And our Chairman, as usual, has shown his 
extraordinary commitment to investing in medical research. And 
I think his last remarks should be heeded well.
    I have a strong group of volunteers who are involved with 
lupus in my district, and they really have devoted their lives 
to prevention, to finding a cure. And this Chairman has shown 
extraordinary leadership. And it is going to be up to 
volunteers in my district, volunteers around the country, 
average citizens to let every Member of Congress know that this 
is a battle we have got to win. And I personally want to thank 
our Chairman for the leadership, and thank you for taking time 
to be such a fighter and such a leader to bring an end to the 
pain and suffering that I know this brings.
    And I thank you very, very much Carrie. You are a 
wonderful, wonderful Member of Congress.
    Mrs. Meek. Thank you.
    Mr. Bell. Thank you, Mr. Chairman.
                              ----------                              

                                         Wednesday, April 14, 1999.

                  DYSTONIA MEDICAL RESEARCH FOUNDATION


                                WITNESS

ROSALIE LEWIS, PRESIDENT
    Mr. Porter. Thank you. The next witness is Rosalie Lewis, 
the President of the Dystonia Medical Research Foundation which 
I believe is located in the City of Chicago, is that correct?
    Ms. Lewis. Yes, it is.
    Mr. Porter. There you are. How are you?
    Ms. Lewis. The foundation is located in Chicago, but I am 
in New York.
    Ms. Lowey. Yay.
    Mr. Porter. That gets both of us. Ms. Lewis, please 
proceed.
    Ms. Lewis. Thank you very much. Congressman Porter, it is a 
pleasure to be here and I am extremely grateful to be allowed 
to inform you of dystonia. As you said, I am Rosalie Lewis, 
president of the Dystonia Medical Research Foundation. And 
sitting next to me is Sally Presti, regional coordinator for 
the mid-Atlantic states. From my three sons, who have dystonia, 
and the estimated 300,000 other children and adults living with 
the disorder, I would like to tell you why we so desperately 
need your help.
    Dystonia is a neurological disorder characterized by 
involuntary muscle contractions and sustained postures. There 
are several different types of dystonia: Generalized dystonia 
which affects many parts of the body and usually begins in 
childhood. My sons, Benjamin and Daniel, have generalized 
dystonia, which is progressive and began at the age of seven. 
Focal dystonia is affecting one specific part of the body such 
as the eyelids, vocal cords, neck, arms, hand or feet. My son 
Aaron has a focal dystonia of the hand, essentially making 
normal penmanship impossible. And secondary dystonia, which can 
result from brain injury or illness. Mrs. Presti developed 
dystonia as a result of a brain injury and was finally 
diagnosed 3 years after her accident at the National Institute 
of Neurological Disorders and Stroke. The diagnosis was post-
traumatic progressive generalized dystonia.
    The Dystonia Medical Research Foundation is dedicated to 
serving people with dystonia. The goals of the foundation are 
to advance research into the causes of and treatments for 
dystonia; hopefully, to find a cure; to build awareness of 
dystonia in both the medical and lay communities; and to 
sponsor patient and family support groups and programs.
    The foundation conducts medical workshops and regional 
symposiums during which comprehensive medical and research data 
regarding dystonia is presented, discussed, and disseminated. 
In October 1996, the National Institutes of Health was one of 
our cosponsors for an international medical symposium featuring 
60 papers on dystonia and 125 representatives from 24 
countries.
    We anticipate our next medical symposium in the year2001, 
and we will have a preliminary workshop later this year in May. The 
Dystonia Medical Research Foundation recommends that the National 
Institutes on Neurological Disorders and Stroke and the National 
Institute on Deafness and other communication disorders be funded in 
fiscal year 2000 at $1.04 billion and $264.4 million respectively, a 15 
percent increase over fiscal year 1999 for both.
    Because dystonia is the third most common movement disorder 
after Parkinson's and tremor, and affects Americans six times 
more often than most better known disorders such as 
Huntington's, muscular dystrophy, and Lou Gehrig's disease. We 
ask that NINDS fund dystonia specific extramural research at 
the same level it supports research for these other 
neurological disorders.
    The Dystonia Foundation would also encourage the 
subcommittee to support NIDCD in its efforts to revamp its 
strategic planning process and to support NINDS with its 
priorities and plans for neuroscience in the new millennium. 
We, the foundation, believe that with your help more treatments 
and a cure are in the near horizon.
    This will not only help my sons, Aaron, Benjamin and 
Daniel, but Mrs. Presti and the hundreds of thousands of others 
as well who suffer with this disease. Thank you once again for 
your time and attention. And I would be happy to answer any 
questions that you might have.
    [The prepared statement of Rosalie Lewis follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. Ms. Lewis, thank you for your testimony. Ms. 
Presti, thank you for being with us. We are going to do the 
best we can to do exactly what you asked. I have said to each 
of the panels that have come here that this is not going to be 
an easy task this year. We do have a budget resolution, it was 
passed this morning. I imagine the Senate has also passed their 
version.
    And we will probably have allocations as early as next 
week, that will give us an idea of the resources we have to 
work with on this subcommittee in order to meet the high 
priorities that lay before us. And you are going to see some 
ups and downs in the process, but I think eventually we will 
get to where we want to go and where you want us to go. So 
thank you for being with us today. Thank you for your 
testimony.
    Ms. Lewis. We always feel that your heart is with us every 
step of the way.
    Mr. Porter. Thank you.
    Ms. Lewis. Thank you.
    Mr. Porter. Thank you. There is one vote, with the 
possibility of a second vote, the subcommittee is going to have 
to stand briefly in recess.
    [Recess.]
                              ----------                              

                                         Wednesday, April 14, 1999.

                      IMMUNE DEFICIENCY FOUNDATION


                                WITNESS

RICHARD BARR, M.D., MEMBER, BOARD OF TRUSTEES
    Mr. Porter. The subcommittee will come to order.
    We continue our public witness hearings with Dr. Richard 
Barr, M.D., member of the board of trustees of the Immune 
Deficiency Foundation.
    Dr. Barr, welcome.
    Dr. Barr. Thank you. Congressman Porter and members of the 
subcommittee, thank you for the opportunity to testify today on 
behalf of the Immune Deficiency Foundation.
    Primary immunodeficiencies are a group of genetic diseases 
that share in common an inability of the individual's immune 
system to combat infection. They affect an estimated 40,000 
individuals infants, children and adults and if not diagnosed 
early and treated properly lead to significant illness and 
early death.
    The Immune Deficiency Foundation is the national 
organization dedicated to improving the lives of these 
individuals. I am here today to speak as both a patient and a 
physician.
    My case is quite representative of a typical immune 
deficient patient. I was diagnosed with common variable immune 
deficiency 10 years ago following years of repeated infections 
which were unresponsive to antibiotics and undiagnosed by 
numerous physicians who were colleagues of mine. This led to 
numerous unsuccessful surgeries resulting in permanent lung and 
sinus damage.
    Prior to my diagnosis, a day was considered successful if I 
had enough energy to get out of bed. Following appropriate 
diagnosis and treatment with intravenous immunoglobulin, IGIV, 
I was able to return to my medical practice and have a new 
lease on life. IDF works to improve the clinical awareness and 
treatment of immune deficiencies.
    Since 1997, IDF has had a contract with the National 
Institutes of Allergy and Infectious Disease to construct and 
maintain registries of eight primary immune deficient diseases. 
The goal of the registries is to assemble a comprehensive 
clinical picture of each disorder, including estimates of the 
disease prevalence, clinical course and complications. This 
data will be an invaluable source for physicians doing basic 
research.
    Further expansion of these registries is essential if we 
are to increase our understanding of primary immunodeficiency 
diseases and the immune system in general.
    The majority of primary immune deficient patients receive 
IGIV and body replacement therapy. IGIV is derived from pooled 
plasma and is administered intravenously for the life of the 
patient. I have been receiving this therapy since my diagnosis.
    In the past, when patients received this life-saving 
treatment, they were primarily concerned with the potential 
transmission of blood-borne pathogens, HIV and hepatitis 
Cprimarily, and the considerable difficulties associated with frequent 
infusions. However, since the fall of 1997, a new and greater concern 
arose, an inability to obtain IGIV. Due to a confluence of 
circumstances, the U.S. marketplace has been unable to meet the needs 
of patients who are dependent on IGIV. Demand simply exceeded supply.
    Moreover, despite a number of promises by both government 
and industry to increase production and expedite new product 
licensure, today we are in shorter supply than at any time in 
recent history. In 1998, the U.S. shortfall was 5 million 
grams; and industry currently estimates that only a 9-day 
supply of IGIV is available. Imagine knowing that a life-saving 
therapy exists for your child and living with the fear that it 
may not be available tomorrow.
    The shortage has prompted several U.S. manufacturers and 
numerous offshore companies to attempt supply solutions. U.S. 
manufacturers want to introduce new products and technologies 
that will increase the yield of each donor pool, thereby 
increasing final product supply. Because the rest of the world 
is not experiencing a shortage, offshore companies would like 
to import their IGIV products which have been in therapeutic 
use in their own countries for a number of years.
    Regulatory requirements dictate that these products be 
proven safe and effective in the U.S. through clinical trials. 
Clinical efficacy in a study can take years to assess, time we 
don't have under the current health care crisis.
    IDF has worked closely with FDA and industry to propose 
solutions, including a revised clinical trial protocol allowing 
for numerous trials to be conducted concurrently. In addition, 
NIAID has expressed an interest in investigating the mechanisms 
of action in IGIV. We encourage the subcommittee to support 
this important research.
    Finally, in spite of the IGIV shortage, IGIV usage 
continues to expand as a long-term treatment of other chronic 
disease states. The medical community is aware of a number of 
reported cases of unexplained central nervous system disorders 
experienced by immune deficient patients who receive ongoing 
IGIV therapy. Blood carries with it inherent risks which 
increase for life-long recipients. Although all of the 
currently used products are virally inactivated there are 
concerns about new and emerging pathogens and their ability to 
be transmitted through blood. Specifically, now IDF would 
welcome a joint collaboration between the Centers for Disease 
Control and Prevention and the FDA in conducting surveillance 
within the immune-deficient patient population to evaluate the 
experience of the only long-term and frequent recipients of 
IGIV.
    Mr. Chairman and members of the subcommittee, thank you 
again for the opportunity to testify today. In closing, I want 
to state the Immune Deficiency Foundation's strong support for 
a 15 percent increase in funding for NIAID in fiscal year 2000. 
I would be happy to answer any questions.
    Mr. Porter. Dr. Barr, thank you for your testimony.
    [The prepared statement of Dr. Richard Barr, M.D., 
follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. I assume that immune deficiency can be detected 
by a simple blood test; is that right?
    Dr. Barr. That is generally true, yes.
    Mr. Porter. You just suggested you needed for the 
surveillance some kind of cooperation between FDA and CDC? Why 
can't CDC do that alone?
    Dr. Barr. I am going to defer, if I can, to Miriam O'Day 
with our Immune Deficiency Foundation to specifically answer 
that. I can't.
    Ms. O'Day. Thank you for your question, Chairman Porter.
    They could, in fact, conduct that surveillance alone; but, 
in cooperation with FDA, they may be able to share information. 
Our hope was that if there are a number of clinical trials 
being conducted concurrently that there are blood draws already 
being taken and that NIAID could cooperate with CDC.
    Mr. Porter. The only reason I ask that is we don't have 
jurisdiction over FDA. That is the only part of HHS that we 
don't have jurisdiction over in this subcommittee, and it seems 
to me that if we are dependent upon getting cooperation from 
FDA rather than simply having CDC do it that wouldn't be as 
easily accomplished.
    Ms. O'Day. We thought we would offer an interagency 
approach, but certainly CDC could conduct the surveillance 
alone.
    Mr. Porter. Is there any indication they are going to do 
that?
    Ms. O'Day. They have had some interest; but, again, we 
would ask for some appropriation money to be set aside for 
that.
    Mr. Porter. Let me take a look at it.
    Thank you very much, Dr. Barr.
    Dr. Barr. Thank you.
                              ----------                              

                                         Wednesday, April 14, 1999.

                      NATIONAL MEDICAL ASSOCIATION


                                WITNESS

GARY C. DENNIS, M.D., PRESIDENT
    Mr. Porter. Dr. Gary C. Dennis, M.D., President of the 
National Medical Association.
    Dr. Dennis.
    Dr. Dennis. Good afternoon, Chairman Porter, members of the 
subcommittee. Thank you for the opportunity to present the 
views of the National Medical Association. I am its President. 
I am also the Chief of Neurosurgery at Howard University.
    Just to give you a little background on the National 
Medical Association, we represent over 20,000 African American 
physicians primarily and we also have about 199 State and local 
societies all over America. Today, though, we would like to 
highlight some of our Association's specific funding 
recommendations for fiscal year 2000. My complete written 
statement, though, has been presented for the record. Because 
of time I will just abbreviate my comments.
    As Congress and this subcommittee contemplate doubling the 
NIH budget, there is historic opportunity to actually do more, 
to actually begin to fund more efforts that are targeted 
towards health care disparities that exist in our Nation's 
minority populations. And of course earlier today you heard 
testimony about lupus being a problem in minority communities, 
especially African Americans, but so are most diseases, cancer 
especially, prostate cancer, diabetes, HIV, AIDS, injuries, you 
name it, and there are problems there.
    We feel that in order to address these problems more 
specifically, there should be increased funding for the NIH 
Office of Research on Minority Health. We also strongly 
recommend that the NIH elevate this office from its current 
status to the status of a center which addresses domestic 
health care disparities, which is really one of the major 
objectives of the National Institutes of Health now. This would 
enable NIH to ensure research targeted towards minorities is 
carefully and strategically coordinated across institutes. It 
would increase the office's budget and allow the office to make 
grants from its own budget to fund important minority-focused 
biomedical research products and essentially allow it to fund 
peer review research. It would also help to address the often 
systematic oversight of minorities in clinical trials, which is 
continuing to be a problem.
    NIH needs this and NMA recommends that the process for 
funding the Office of Research on Minority Health to center 
status should be modeled after the recent elevation of the 
Office of Alternative Medicine to the Center for Complementary 
and Alternative Medicine.
    The NMA also urges the subcommittee to substantially 
increase proposed funding for health professions training 
programs at HRSA above the administration's recommended 2000 
budget allocation of $252 million. This represents a $50 
million cut, and although the administration's proposal does 
provide $16 million of increase for training for diversity 
programs, the NMA strongly supports that. The funding cuts that 
really affect the health professions training programs are 
really a dangerous precedent, and these funding cuts would 
negatively impact the ability of minorities to pursue careers 
in health.
    NMA also strongly supports continued funding for Howard 
University as well as historically black colleges and 
universities who train many health care professionals that 
serve our communities. As the administration makes closing the 
health care disparities gap a major priority, the NMA strongly 
supports increasing funding for the Office of Minority Health 
itself. While a minimum increase of $2 million would provide 
additional funds in line with the overall increase provided for 
HHS, significantly more support is needed to address the goals 
established by the Health Disparities Initiative. The disparity 
health status of our racial ethnic minorities are in many ways 
byproducts of historic and ongoing racial discrimination 
against African Americans and other minorities.
    The NMA also strongly urges Congress to commission a 
national study on racism in medicine with particular attention 
paid to medical education in the health care delivery. A recent 
Georgetown study really highlights the need for it, where black 
women were referred for life-saving cardiac diagnostic and 
treatment service only 40 percent as often as white men, while 
black women have a very high mortality rate due to cardiac 
disease. So there clearly are some disparities there that 
reflect on racial biases and stereotypes throughout medical 
education which need to be addressed.
    A clear understanding of the extent to which racism is 
engrained in the practice of medicine and health care delivery 
and the education of health profession students is absolutely 
essential to this effort to eliminate health care disparities 
by 2010.
    In closing, Mr. Chairman and members of the committee, I 
would like to thank you for the opportunity to present the 
views of the National Medical Association and I am pleased to 
respond to any questions you may have.
    [The prepared statement of Dr. Gary Dennis, M.D., follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. Dr. Dennis, we obviously are sympathetic to the 
health disparities situation that you describe in your 
testimony. We are going to do the best we can to address that.
    As far as moving the office to a center status, it has been 
done in our bill. It was done recently, as you know, but it was 
done in negotiation that took place in the context of an 
omnibus bill, and very frankly it is an authorizing matter that 
we don't want to do. We want the authorizers to do their work 
and to make these decisions and leave us to do our work and 
provide funding according to the priorities as we see them.
    So I think you are going to see a lot of resistance, at 
least this year in all of the bills, not just our bill, to 
putting in authorizing provisions and appropriations bills, and 
I would urge you for that reason to take this concept to the 
authorizing committee, to Congressman Bilirakis I think they 
would have jurisdiction, I am almost certain they would and to 
suggest to him that this is what you believe to be an 
appropriate approach.
    In other words, I am definitely not promising to put any 
authorizing provisions in the bill. We think we want to keep 
the bill an appropriations bill and have the authorizing done 
where it should be done.
    Dr. Dennis. Thank you.
    Mr. Porter. This doesn't indicate any hostility to the 
concept, simply hostility to making our bill an authorizing 
vehicle. Thank you very much for your testimony.
    Dr. Dennis. Thank you very much for your advice.
                                         Wednesday, April 14, 1999.

               AMERICAN SOCIETY OF CLINICAL PATHOLOGISTS


                                WITNESS

SHIRLEY GREENING, PROFESSOR AND CHAIR OF THE DEPARTMENT OF LABORATORY 
    SCIENCES, THOMAS JEFFERSON UNIVERSITY, COLLEGE OF HEALTH 
    PROFESSIONS
    Mr. Porter. Shirley Greening, Professor and Chair of the 
Department of Laboratory Sciences, Thomas Jefferson University, 
College of Health Professions, representing the American 
Society of Clinical Pathologists. Ms. Greening.
    Ms. Greening. Good afternoon, Chairman Porter. My name is 
Shirley Greening, and I am from Thomas Jefferson University in 
Philadelphia. I am here today representing the American Society 
of Clinical Pathologists through the ASCP.
    ASCP's 75,000 members include board-certified pathologists, 
other physicians, clinical scientists, and certified 
technologists and technicians, and is the leading organization 
for the certification of laboratory personnel. ASCP has 
testified in the past about the effectiveness of the Allied 
Health Project Grants program, and your favorable responses to 
the successes of the program are very greatly appreciated.
    I am here today to express concern about the outlook for 
allied health professionals: in general for allied health 
professionals; in particular for laboratory professionals. 
ASCP's Board of Registry, in conjunction with MORPACE 
International, conducts a biennial wage and vacancy survey of 
2,500 medical laboratory managers. The 1998 data has just been 
made available and the information regarding cytotechnologists 
those are the professionals who interpret cellular material or 
Pap smears medical technologists in rural areas and 
histotechnologists, the people who prepare tissue specimens, is 
of particular interest and particular concern.
    The current vacancy rate for staff cytotechnologists is 
10\1/2\ percent. This is a 3 percent increase over the 1996 
rate which was 7.1 percent. This is the first increase in this 
vacancy rate in 8 years. The vacancy rate in rural areas is 
17.6 percent. The vacancy rate for cytotechnologists and 
supervisors in small- to medium-size cities is 20 percent.
    The vacancy rate for histotechnologists is also alarming. 
In the northeast region of this country, there is a vacancy 
rate of 25 percent and for hospitals with less than 100 beds, 
there is a whopping 30 percent vacancy rate for 
histotechnologists. While there was only a moderate increase in 
the vacancy rate for medical technologists, the vacancy rate in 
rural areas is at a high 17.9 percent.
    These data certainly show cause for concern. With high 
vacancy rates, there is concern that some laboratories will not 
have the appropriate personnel available to evaluate Pap 
smears.
    I brought with me an enlargement of cells from cervical 
cancer so you can see what cytotechnologists look at and 
evaluate in making these cancer determinations.
    Given the country's aging population, too, the number and 
complexity of biopsy specimens and molecular techniques will 
likely increase during the next decade. The real threat of 
bioterrorism also calls for trained laboratory professionals to 
respond. The laboratory allied work force will need to be able 
to react accordingly with appropriate numbers of trained and 
educated personnel. The Allied Health Project Grants program 
has been successful in effectively attracting new allied health 
professionals into the laboratory field, especially in rural 
and underserved areas. For example, of the 64 graduates of the 
University of Nebraska Medical Center Allied Health Project 
Grant program, 95 percent of them took their first job in a 
rural community.
    The grants are also designated to create successful 
minority recruiting and retention programs for medical 
technologists. This was the focus of a University of Maryland 
allied health project where they have attained a 54 percent 
minority medical techology student enrollment at a majority 
institution and an average 95 percent student retention rate, 
placing it among the highest in the country.
    Most Allied Health Project Grant programs continue after 
Federal funding ends, making them a long-lasting and worthwhile 
investment in the future of allied health. The Allied Health 
Project Grants program is a relatively small step in assuring 
that funding is available to attract allied health 
professionals to health careers and to underserved communities. 
Without providing grant seed money to establish these programs, 
there may be one less person to help in the struggle against 
antimicrobial resistance, one less contribution to an early 
diagnosis of cervical cancer, one less asset to employing the 
study of emerging infectious diseases.
    Thank you again for the opportunity to speak to you today. 
I would be pleased to answer any questions.
    [The prepared statement of Shirley Greening follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. Ms. Greening, thank you very much for your 
testimony. We are going to try to do what you want us to do. 
Everybody should keep their fingers crossed about our 
allocation. We will see what we can do. Thank you for coming to 
testify.
    Ms. Greening. Thank you, sir.
    Mr. Porter. We are so far behind because of the votes that 
have occurred. I am going to try to limit my questions. I hope 
witnesses will understand that doesn't indicate any lack of 
interest, but in the interest of having some reasonable chance 
to finish at some reasonable time, I am going to limit my 
questions.
                              ----------                              

                                         Wednesday, April 14, 1999.

                          LEGAL ACTION CENTER


                                WITNESS

MARGO PRESTON, PROGRAM COORDINATOR FOR THE LAKE COUNTY HEALTH 
    DEPARTMENT WOMEN'S RESIDENTIAL SERVICES
    Mr. Porter. Next, Ms. Margot Preston, Program Coordinator 
for the Lake County Health Department's Women's Residential 
Services that is located in Libertyville, Illinois, the 10th 
Congressional District, to testify on behalf of the Legal 
Action Center. And I understand that you don't live in my 
district; is that right?
    Ms. Preston. I did, but I moved.
    Mr. Porter. You work in my district and don't live in my 
district.
    Ms. Preston. I moved one mile across the State line. The 
yard is lovely. I have trees.
    Mr. Porter. We have lovely yards on our side.
    Ms. Preston. Good afternoon. I am Margo Preston with Lake 
County Health Department's Women's Residential Services. I have 
been the Program Coordinator for that service for the past 10 
years, part of which time I did live in your district.
    I thank you for this opportunity to testify in support of 
fiscal year 2000 funding for Alcohol and Drug Treatment 
Prevention and Research programs in the Departments of Health, 
Human Services, and Education.
    Today I am representing the National Coalition of State 
Alcohol and Drug Treatment and Prevention Associations, 
composed of 27 State-based associations of treatment and 
prevention providers in 24 States, and the Legal Action Center, 
a nonprofit law and policy firm that represents individuals in 
recovering from and struggling with alcohol and drug problems 
and AIDS.
    Thank you, Mr. Chairman, for last year's historic increases 
for Alcohol and Drug Treatment Prevention and Research programs 
and your refusal to cut funding to these services. Providing 
strong support for alcohol and drug treatment prevention and 
research is essential in maintaining and improving health and 
well-being in our Nation.
    These programs save lives and money by decreasing alcohol 
and drug use, the cost of crime, health care, AIDS, welfare 
dependence, and by increasing employment. Illinois programs 
have been leaders in developing effective alcohol and drug 
treatment programs for women, youth, and other underserved 
populations.
    For example, Lake County Health Department's Women's 
Residential Services serves women with alcohol and drug 
problems, with priority given to women with children between 
the ages of 3 to 11. These women live with their children in a 
supportive and therapeutic environment where both the women and 
the children receive treatment, prevention, intervention, and 
education services that they need to recover and lead healthy 
and productive lives.
    This program is the only program in Lake County that 
provides residential services for women with children, and it 
is one of the few programs in the State of Illinois that 
provides services for women who have children between the ages 
of 5 to 11.
    Providing alcohol and drug treatment and prevention for 
women with children preserves and improves families and reduces 
health, criminal justice, welfare, and child welfare costs.
    However, despite the success of Lake County programs and 
other programs throughout Illinois, on any given day there are 
more than 2,000 individuals that are on waiting lists in need 
of treatment services. They represent only a small portion of 
the need that exists. Last year's generous funding increases 
are being used to close the treatment gap in several key areas, 
including expansion of treatment services for individuals 
involved in the criminal justice system, services to Hispanic 
youth, expansion of methadone treatment, which is an effective 
treatment for heroin addiction.
    Maintaining last year's funding increases is essential so 
that Illinois will be able to support these important service 
expansions.
    Increased fiscal year 2000 funding, especially for the 
Substance Abuse Prevention and Treatment Block Grant and CSAT's 
targeted expansion program is necessary so that Illinois will 
be able to expand alcohol and drug treatment and prevention 
service capacity further for other underserved populations, 
including pregnant women, women with children, and youth.
    Increased funding would also permit increased service 
capacity statewide. Most of the funding increases are helping 
to expand services in the Chicago area and surrounding 
counties. In Lake County we have waiting lists for all services 
offered. For residential services, the waiting list to be 
eliminated would need an expansion of 50 percent of our 
capacity. For outpatient services, we would need a capacity 
expansion of 100 percent.
    Illinois has also been a leader in providing effective 
community-based prevention services that reduce the onset of 
alcohol and drug use among youth and other vulnerable 
populations. However, decreasing Safe and Drug Free Schools 
State Grants program funding will adversely impact many of 
these programs, including the Illinois Teen Institute and 
Operation Snowball that count on funding from this source.
    [The prepared statement of Margo Preston follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. I do have one question. Do you see multiple 
addictions when you have these young women come to stay in your 
residence facilities? Alcohol and drugs, in other words?
    Ms. Preston. We no longer serve anyone that and I don't 
mean that we reject individuals, but we never see anyone that 
has a dependence or use of only one substance any longer.
    Mr. Porter. Because there is so much demand and these are 
the ones that are in the worse shape, I take it.
    Ms. Preston. Right, because we are further down the care 
continuum. The women who approach us have lengthy substance 
abuse histories of multiple chemicals.
    Mr. Porter. There are a number of non-residential programs 
in Lake County, are there not?
    Ms. Preston. Yes, there are.
    Mr. Porter. But yours is the only residential program?
    Ms. Preston. Correct.
    Mr. Porter. You have, of course, put your finger on a very 
high priority and again we will do the best we can. Thank you 
for coming to testify.
    Ms. Preston. Thank you.
                              ----------                              

                                         Wednesday, April 14, 1999.

                             MARCH OF DIMES


                                WITNESS

JENNIFER L. HOWSE, PRESIDENT
    Mr. Porter. Dr. Jennifer Howse, President, March of Dimes. 
Nice to see you.
    Ms. Howse. Thank you, Mr. Chairman. As President of the 
March of Dimes Birth Defects Foundation, I am very pleased to 
have an opportunity to appear before you to discuss funding 
priorities for the year 2000. I also bring special greetings 
from our Chicago land chapter and I think at least 12 of our 
volunteers do live in Libertyville from that chapter.
    The March of Dimes is a national voluntary health agency 
founded in 1938 by President Roosevelt to combat polio. Today 
we have more than 3 million volunteers across the country and 
1,600 staff who support the work of our foundation. We not only 
have chapters in every State, but also a chapter here in the 
District of Columbia and the chapter in Puerto Rico.
    We are a unique partnership of scientists and clinicians 
and parents and business leaders, and our job is to work to 
improve the health of babies by preventing birth defects and 
infant mortality. We conduct four kinds of programs: research, 
community service, education, and advocacy.
    I have submitted a written statement which encompasses a 
range of recommendations. Today, I will focus in the next few 
minutes on those programs related specifically to birth defects 
research and prevention. Birth defects are the leading cause of 
infant mortality in the United States. Nearly 150,000 babies 
are born every year with birth defects. Research into the 
causes of birth defects is essential to reducing the incidence 
of these very devastating conditions, and therefore our 
foundation recommends increased funding both for the National 
Institutes of Health and for the Centers for Disease Control 
and Prevention.
    Last year the March of Dimes supported very strongly this 
subcommittee's efforts to increase funding for the NIH, and we 
note in particular your longstanding commitment to support the 
NIH and its work. This year we recommend a 15 percent increase 
in the overall budget of NIH, and we especially are interested 
in work supported by NICHD and by the National Human Genome 
Research Institute. Studies and research funded by these 
institutes have the potential to dramatically increase our 
understanding of the biological, structural, and genetic causes 
of birth defects. So we urge the subcommittee to approve 
funding increases of 161 million for NICHD and $118 million for 
the Genome Institute. In addition, we support an increase of 11 
million for the Pediatric Research Initiative in the Office of 
the Director.
    We also recommend increased funding for the Centers for 
Disease Control to implement the provisions of the Birth 
Defects Prevention Act of 1998. This initiative authorized the 
agency to provide surveillance, research, and service aimed at 
birth defects prevention.
    We are recommending a total increase of $36 million to 
enable CDC to address the birth defects research and prevention 
priorities established by Congress last year. Currently CDC 
works with State and local governments and in private 
organizations to implement the provisions of the legislation. 
It is funding eight centers for birth defects research and 
prevention, but these centers have had to limit very critical 
initiatives because they are funded at only one-half of the 
recommended level. So we are recommending an additional $8 
million to fully fund these centers.
    In addition, CDC provides technical assistance to help 
States establish or improve birth defects surveillance 
programs. Recently CDC awarded grants to 18 States. However, 36 
States applied for funding, which clearly demonstrates the need 
for additional resources, so we are recommending an additional 
$2 million so that more States can gear up to properly track 
the incidence of birth defects.
    Beyond the much needed research, we also need to work 
together to promote strategies to prevent birth defects from 
occurring in the first place. Two examples that I will very 
quickly mention today because they have been eloquently 
described by previous witnesses: One is folic acid and its role 
in preventing neural tube defects; and the other is preventing 
the occurrence of fetal alcohol syndrome.
    Every year in the United States, about 2,500 babies are 
born with these neural tube defects. They are among the most 
serious, costly and preventable birth defects that occur. The 
lifetime of care, the estimates are anywhere from 300,000 to 
500,000 and 70 percent of these could be prevented by women 
taking 400 micrograms of folic acid every day, so it is 
important to get the message out. Therefore we are recommending 
an increase of $20 million to CDC to help meet this important 
goal.
    We will also be holding a congressional briefing on April 
30 at 10:00 a.m. for congressional staff on this subject of 
folic acid and outreach and the job that we all need to do.
    The second area is fetal alcohol syndrome. This occurs with 
2,000 infants a year. It is a preventable condition. More 
treatment and programs and surveillance are needed to combat 
this terrible, terrible problem which results in very serious 
mental retardation, a lifetime and lasting condition.
    Therefore, in conclusion, we at the March of Dimes urge you 
to consider these increases in the fiscal 2000 Labor, HHS and 
Education appropriations bill. We thank you for an opportunity 
to testify and we thank you very much for your continuing 
leadership in these vital areas.
    [The prepared statement of Dr. Jennifer Howse follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. Dr. Howse, thank you very much. What year was 
it that the March of Dimes changed its mission from polio to 
birth defects?
    Ms. Howse. It was in 1958, after there was ample 
demonstration that the polio vaccine was safe and effective and 
it was time for us to focus on another critical set of 
childhood health initiatives.
    Mr. Porter. It was when I was a young man. It was a very 
important subject in our household, because my father was a 
victim of polio and walked all his life with a brace on his 
leg. And when I came back from working in the Department of 
Justice when Robert Kennedy was the Attorney General, the first 
thing I got involved with in my hometown of Evanston was to 
chair the March of Dimes campaign. So I know a little bit about 
the institution and value it very, very highly. You do 
wonderful work. We are going to try to do what you want us to 
do. Thank you for coming to testify.
    Ms. Howse. Thank you very much.
                              ----------                              

                                         Wednesday, April 14, 1999.

            NATIONAL COALITION FOR HEART AND STROKE RESEARCH


                                WITNESS

LEISL GRETZ
    Mr. Porter. Our next witness is Leisl Gretz, a volunteer 
with the National Coalition for Heart and Stroke Research.
    Ms. Gretz. Good afternoon, ladies and gentlemen. I am here 
representing the National Coalition for Heart and Stroke 
Research. The National Coalition has 15 member organizations 
that represent over 5 million volunteers or members nationally. 
My life has been seriously affected by both stroke and heart 
disease.
    In 1982 my father, at age 39, suffered his first of many 
heart attacks. The heart attack was followed by quadruple 
bypass surgery, after which we were hoping the problems would 
be over but they weren't. His problems did not end. A few years 
after surgery, he began experiencing heart fibrillations which 
caused more heart attacks. I say heart attacks because we 
don't--nobody knows for sure how many he has had. We stopped 
counting after the first six or seven. The doctors implanted a 
heart defibrillator to ease the fibrillations in his heart, and 
again the problems subsided. But in 1994 he developed an 
aneurysm in his stomach. When the doctors operated to 
obliterate it, he had more heart attacks and spent the next 3 
weeks on life support.
    After all this, the doctors discovered that his heart 
valves had become blocked and another quadruple bypass surgery 
was necessary, so he underwent his second open heart surgery 
after which his problems again seemed to be over.
    In February of 1999, he went into the hospital because of 
the pain and discomfort he was experiencing. While he was in 
the hospital, he suffered another heart attack. The doctors 
performed a catheterization to see what was the cause of the 
heart attack. The doctors learned that of the four valves in 
his heart, two are completely blocked and one is 90 percent 
blocked. So right now my father's heart is working on one valve 
and one-tenth of a valve.
    Because of the poor circulation and all the heart 
medication he must take, he is tired all the time and he gets 
worn out really easily. A simple task like walking to the end 
of the driveway would tire him out. My father has fought for 
his life many times and he is winning so far, but there are so 
many people out there who are going to lose their loved ones to 
heart disease. My father wanted to be here today but his heart 
problems have prevented that, so I came here to tell his story.
    Now, while my father was dealing with his heart problems, I 
was fighting a battle of my own. In 1983 when I was in eighth 
grade, I suffered a hemorrhagic stroke. The stroke didn't kill 
me, obviously, but when I woke up in the hospital afterwards I 
couldn't talk, couldn't walk, couldn't see straight, and the 
right side of my body was jerky, as the stroke had affected my 
motor nerve.
    The hemorrhage was caused by a congenital arteriovenous 
malformation. Brain surgery was performed about 2\1/2\ months 
after the bleed to clip off the AVM to make sure it wouldn't 
hemorrhage again. It was almost a year before I could walk and 
talk again normally. I had to teach myself to reuse my left 
hand and I had to live without supports. My vision remained to 
be a problem for me, but I persevered and managed to graduate 
with the rest of my class in 1987.
    After I graduated from high school I didn't want to go to 
college, which was my original plan, because reading and 
studying had become such difficult tasks for me. But after 
about 3 years, I realized that more education was necessary if 
I ever wanted to get anywhere. So I attended Montgomery County 
Community College. It took me 5 years to get through the first 
2 years of college, as I could only go on a part-time basis due 
to my visual problems.
    I finally graduated with my associate's degree in May of 
1997 and I was planning to continue my education at Temple in 
September of the same year. But once again, fate had other 
plans for me. As it turns out, the brain surgery that was 
performed in 1983 did not work the way it should have. The 
doctor had left a small piece of the AVM unclipped. It was not 
visible through the angiogram as the pictures angiograms 
produced in 1983 are not as clear as the ones they produce 
today. So the AVM remained growing in my head until July of 
1997 when it ruptured and caused a second hemorrhagic stroke.
    I woke up in the hospital about 2 weeks after the stroke. 
My hair had been shaved off once again. My voice was slurred 
once again, and the right side of my body was now completely 
useless. I could use it a little bit before. And to add insult 
to injury, my eyesight was even worse, and I did not think that 
was possible. I went through about 6 months of physical 
cognitive speech and occupational therapy in a rehab center at 
this time. I had no rehab the first time.
    I returned to school. I am a junior at Temple, and much of 
my life is much as it was before the hemorrhage, but lots of 
things have changed permanently. For one thing, my right side 
is completely useless now. My balance has yet to be stable. I 
have short-term memory lapses and because of these problems, I 
am unable to work; and believe it or not, I want to work. To 
look at me, no one would ever know I have had two strokes, but 
I have. That is the problem with these invisible wounds. On the 
outside I look fine, but on the inside my wounds are very real. 
I will never be the same again since the second stroke, and I 
accept that, but you are looking at somebody who thought she 
would never be so tired at age 30.
    Almost 60 million Americans have cardiovascular disease and 
almost 1 million die every year. After I had the second 
hemorrhage, I asked my mom why it happened again and she told 
me that it was my reminder, my reminder to utilize my negative 
experiences to try to create something positive. So I have come 
here today to ask for your help in combating heart disease and 
stroke. Please increase the funding. Thank you.
    [The prepared statement of Leisl Gretz follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. Ms. Gretz, obviously we are going to try to do 
that. How old is your father today?
    Ms. Gretz. Today he is 58.
    Mr. Porter. And when was his first heart attack?
    Ms. Gretz. 39.
    Mr. Porter. At age 39.
    Ms. Gretz. Yes.
    Mr. Porter. Would you say that he had had a number of risk 
factors?
    Ms. Gretz. Yes, I would say that. Heart problems run in the 
male side of my family.
    Mr. Porter. Genetic risk factors. In other words, a 
history.
    Ms. Gretz. Yes, there was.
    Mr. Porter. I am talking about the voluntary kind, smoking.
    Ms. Gretz. No.
    Mr. Porter. None of those necessarily appeared in his case?
    Ms. Gretz. No.
    Mr. Porter. Well, you are very obviously correct that heart 
disease affects millions and millions and millions of Americans 
and it is a very, very high priority for our research, and we 
are going to do everything we can to increase the funding and 
make it possible that we can overcome this. Thank you for 
coming to testify.
    Ms. Gretz. Thank you.
                              ----------                              

                                         Wednesday, April 14, 1999.

      NATIONAL COALITION FOR OSTEOPOROSIS AND RELATED BONE DISEASE


                                WITNESS

SANDRA C. RAYMOND, EXECUTIVE DIRECTOR
    Mr. Porter. Sandra C. Raymond, Executive Director, National 
Coalition for Osteoporosis and Related Bone Disease.
    Ms. Raymond.
    Ms. Raymond. Yes. Good afternoon, Chairman. I also want to 
thank you for this significant increase in NIH funding in 
fiscal year 1999. I too have summarized my testimony and will 
try to be brief. I do represent, I am the Executive Director of 
the National Osteoporosis Foundation, and I should say right 
here and now that we have a very strong representation in your 
district, Mr. Chairman.
    I am testifying here on behalf of the National Coalition 
for Osteoporosis and Related Bone Diseases. This coalition 
represents diseases that affect 30 million women, men, and 
children, diseases such as osteoporosis and Paget's disease of 
bone, osteogenesis imperfecta, and myeloma. The annual cost of 
acute and long-term care for these diseases is estimated to be 
about $20 billion. As the population ages, we project that 
these costs are going to increase to more than $60 to $80 
billion by the year 2020. Without an increased medical research 
effort today, osteoporosis and related bone diseases will drive 
up the cost of medical care and I think overwhelm any effort to 
contain health care costs.
    So, of course, we are urging you to support a 15 percent 
increase in funding for NIH, especially the six institutes that 
are responsible for bone disease research: NIAMS, NIA, NIDCR, 
NIDDK, NICHD, and NCI. We think that there are vast 
opportunities to support innovative research on osteoporosis 
and related bone diseases.
    For example, we have a recent breakthrough in bone research 
which includes the discovery that a family of molecules known 
as OPG or RANK, R-A-N-K, is critical to the formation of 
osteoclasts. These are the cells that destroy bone and this may 
lead to new ways of preventing and treating osteoporosis. 
Already in the laboratory by balancing these molecules in mice, 
researchers have been able to increase skeletal bone mass.
    We commend NIAMS, that is the lead institute for bone 
disease research, for so much of the progress that has already 
been made, but we want to point out that NIAMS received a 12.4 
percent increase in fiscal year 1999, that it is one of the 
lowest funded institutes of all of the NIH institutes, and that 
in order to achieve parity in success rates, NIAMS needs a one-
time boost. When it was born here in the Congress in 1985, you 
know, it had a very small appropriation, and even though you 
are adding every year, you are adding to a very small funding 
base.
    By the way, that is the institute that serves the lupus 
issue that was brought before you earlier in today's hearing. 
Lupus is contained in that institute. It is never going to get 
the funding it needs if NIAMS doesn't get that sort of one-time 
boost.
    So we believe that with additional funding, the institute 
could focus on many of the gaps in osteoporosis research, such 
as osteoporosis in men.Research shows that estrogen levels 
decline with age in men as well as in women, so perhaps 
osteoporosis in men may be attributable to low levels of 
estrogen, and that would lead to prevention and treatment of 
osteoporosis in men.
    Today in the U.S. we have 5 million men who have the 
disease or are at risk. Supreme Court Justice Blackman fell in 
his home, broke his hip. That was an osteoporosis hip fracture. 
So I would also like to bring to your attention a proposal by 
Congresswoman Lynn Woolsey. She is asking for provision of 
funding to the NIH Osteoporosis Resource Center for the purpose 
of educating women ages 45 to 64 about osteoporosis and the 
risk factors. It is critically important that we reach this 
group because women, when they go through menopause, lose 
almost 20 percent of their bone mass. Surprisingly, the most 
recent Hayes study found that 93 percent of estrogen-deficient 
women who were diagnosed with osteoporosis as a result of a 
bone density test didn't know anything about the disease. So we 
are urging you for that one-time boost in NIAMS funding to look 
at Congresswoman Lynn Woolsey's proposal, and the Coalition 
stands ready to serve you in any way that we can.
    [The prepared statement of Sandra Raymond follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. Thank you very much for your testimony. This is 
a very serious matter, especially as the population ages. We 
take it very seriously. We will do the best we can.
    Ms. Raymond. Thank you so much.
    Mr. Porter. Thank you.
                              ----------                              

                                         Wednesday, April 14, 1999.

              NATIONAL COUNCIL OF REHABILITATION EDUCATION


                                WITNESS

JOHN J. BENSHOFF, PH.D., MEMBER OF THE BOARD OF DIRECTORS
    Mr. Porter. Dr. John J. Benshoff, Ph.D., Member of the 
Board of Directors, National Council of Rehabilitation 
Education, from Carbondale, Illinois.
    Mr. Benshoff. From Carbondale, Illinois, about 400 miles 
from you, but still part of the great State of Illinois.
    Before I begin my testimony I would like to bring greetings 
from a faculty colleague of mine, a former colleague of yours. 
I had a chance to speak with Senator Paul Simon last week about 
coming here, and he said please convey to both Chairman Porter 
and the other members of the committee his regards. He is doing 
a wonderful job at the SIU and we are very, very proud of him 
and very, very proud of his work.
    Mr. Porter. Thank you, Dr. Benshoff. He is a favorite of 
mine as well and a longtime friend, and his wife Jean, of 
course, appears before this subcommittee in regard to library 
science. And you might be interested; his wife Jean was once a 
prosecutor, assistant prosecutor in my father's courtroom.
    Mr. Benshoff. I didn't know that, sir.
    Mr. Porter. Way before they were married.
    Mr. Benshoff. She is also a gem on our campus. It is just a 
delight to work with both of them. Wonderful people.
    I am here today representing the National Council on 
Rehabilitation Education. It is a group of hundreds of faculty 
and staff members at nearly a hundred universities. Our job is 
to train the rehabilitation counselors, the vocational 
evaluators, the job placement specialists and the other 
rehabilitation professionals whose task it is to serve 
Americans with disabilities. We are requesting that this 
committee and Congress allocate $50 million for rehabilitation 
training for fiscal year 2000.
    Let me talk about some of the challenges that we face. I 
think, Chairman Porter, our experience in Illinois, the 
diversity between where I live and you live is typical of 
disability. Disability has no boundaries. It is not an urban 
issue. It is not a city issue. It is not a suburban issue. It 
is not a rural issue. But yet there are unique challenges we 
face. When I talk to my colleagues who work in inner-city 
Chicago, they tell me their caseloads grow because of inner-
city crime. The victims of violent crime, often the innocent 
victims of violent crime find themselves disabled and find 
themselves entering a rehabilitation arena.
    In my area, rural southern Illinois, we know that rural 
communities are faced with many, many problems. Rural residents 
as a group are sicker, they are poorer, and their services are 
few and far between. Our task as rehab educators, then, is to 
prepare practitioners who can go out and work both in our big 
cities and in our rural areas.
    We also are faced with the challenges of technology. I know 
earlier today that Christopher Reeve spoke, a gentleman who has 
a severe, severe disability, and we see many people like him 
entering the rehabilitation disability community. Now, these 
are people that 15, 20 years ago would not have survived. 
Technology has allowed them to live, and now they wish to go on 
and be productive citizens. And it is the task of the students 
with whom I work to be able to provide them with the very 
needed services they must have in order to go out and function 
in the world.
    Earlier today we heard testimony about spina bifida. I just 
want to share with you a brief story. A young woman came into 
my office in her wheelchair the other day. I happen to know 
her. She is in a master's degree program in our university. She 
said, Dr. Benshoff, I really want to study to get my doctorate. 
I want to go out and teach. I want to share my experiences as a 
person with a disability, and I want to also develop the skills 
and the background I will need to do that.
    I asked her, I said, What is your disability? I don't know 
that about you. She says, I have got spina bifida. Now, as you 
heard earlier, 20, 30 years ago she would not have survived. 
This is a young woman with a bright future, a bright role as a 
rehab educator, and it is the rehabilitation education dollars 
that you fund that will support her career.
    As you know, from the very beginning we in rehabilitation 
have been dedicated to turning tax consumers into taxpayers. 
That has been our philosophy for years and years and years. And 
if you look at the data from the Rehab Services Administration, 
you see that for every dollar we spend on rehab services, there 
is an $18 returned to the Treasury. Now, that is a pretty good 
deal.
    Most individuals as Ms. Gretz just eloquently testified, 
who have disabilities want to go to work. That is an important, 
important situation. They are motivated for employment. They do 
not wish to languish at home. It is our role, our 
responsibility as Americans and as rehab educators, we believe, 
to prepare practitioners who will be able to help individuals 
like Ms. Gretz and the millions of other individuals with 
disabilities to assume their rightful place in the American 
work force. We want to carry out fully the promises made by the 
Americans With Disabilities Act.
    I had a student come to me the other day from another 
discipline. She was taking one of my classes and she said the 
thing that every professor loves to hear. ``I really liked your 
class. And I like the rehab program.'' I said, why is that? 
Because she is in a very good program in another area of the 
university. She said, because you people in rehab do two 
things. You talk about solutions, not just problems. Other 
programs talk about problems. Rehab folks talk about solutions 
and you talk about jobs. You recognize that people want to work 
and you recognize the importance of work in people's lives.
    And we have heard that eloquently expressed time and again 
today.
    Well, we have got some other challenges facing us. The need 
for qualified professionals is growing. In the 1992 
reauthorization of the Rehab Act, Congress very wisely set 
forth the requirement that the States should employ individuals 
who are appropriately trained, meaning trained at the master's 
degree level, to provide services to people with disabilities. 
In our State, for example, out of about 270 rehab counselors, 
about 75 percent will need upgraded training. That is a big 
chunk. So we within both the university systems and the state 
agency systems are busy devising ways that we can work together 
to bring that needed training to those individuals. But that 
will be expensive. These individuals are scattered across our 
States. We need to look at innovative and creative ways to 
allow us to provide that education. However, those innovative 
and creative ways don't come cheap.
    In addition, many, many of our current State rehab 
counselors are looking at retirement. We anticipate that as 
many as 50 percent of the present rehab work force will retire 
within the next 5 years. So we need to retrain a significant 
portion of the work force to replace those individuals.
    Finally, Congress in its wisdom has funded a number of 
initiatives in historically black universities and tribal 
universities and colleges and in areas of Hispanic American 
population centers to train those individuals to enter the 
rehabilitation work force. We need to continue to support those 
programs because they are very, very vital in allowing us to 
reach out to the diversity of individuals with disabilities in 
this country.
    We know through research funded by the National Institute 
of Disability and Rehabilitation Research that the best 
services, the most efficient services, the most cost-effective 
services, are offered by well-trained individuals.
    In closing, our request is that Congress allocate $50 
million for rehabilitation training for the coming fiscal year. 
We want to carry out the promises of the Americans With 
Disabilities Act, and we are confident that providing adequate 
funding for the training of qualified personnel will result in 
the highest quality of services with the lowest cost to the 
American taxpayer.
    Thank you for your support. I would be glad to listen to 
any questions you may have, sir.
    [The prepared statement of John J. Benshoff follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. Dr. Benshoff, thank you very much for your 
testimony and for coming here today. We very much appreciate it 
and we will do the very best that we can.
    Mr. Benshoff. I appreciate it. Thank you.
                              ----------                              

                                         Wednesday, April 14, 1999.

            NATIONAL COUNCIL OF STATE AGENCIES FOR THE BLIND


                                WITNESS

GARY HAUG, EXECUTIVE DIRECTOR
    Mr. Porter. Next, Gary Haug, Executive Director, New Mexico 
Commission for the Blind, representative of the National 
Council of State Agencies for the Blind.
    Mr. Haug. Mr. Porter, thank you for the opportunity to be 
here this afternoon and to speak on behalf of the public 
executives who direct services for blind people through State 
agencies under the vocational rehabilitation other programs 
authorized under the Rehabilitation Act. Good government 
invests in the productive independence of its citizenry and the 
Rehabilitation Act is the formal expression of that investment 
for persons with disabilities.
    The Rehabilitation Act resounds with faith in the abilities 
of disabled Americans. We see that faith dramatically affirmed 
in current television ads featuring a blind investment advisor 
talking not about his blindness, but about the importance of 
reliable financial advice for his company's clients.
    We see that faith in the Rehabilitation Act affirmed by the 
83-year-old woman who recently told me how much the services 
that we provide to her under the older Americans who are blind 
portions of the act have affected her life and made it possible 
for her to continue in activities that she has enjoyed 
throughout her life.
    We see that faith dramatically affirmed each and every time 
a blind person goes to work and each and every time older blind 
persons find it possible to stay in their homes, participating 
in the communities that have defined their lives.
    We rejoice in the achievements of those who benefit from 
the faith expressed by the Rehabilitation Act. At the same 
time, we struggle with the knowledge that a high proportion of 
blind and other disabled citizens are not employed. We struggle 
with the certain knowledge that all older Americans cannot 
redeem the benefits promised by the Rehabilitation Act.
    The act finances 82 State agency partners. Those 82 
partners make it possible for blind and other persons with 
disabilities to fulfill their dreams of being financial 
advisors or being successful in any of the other myriad 
occupations that are available to people in this country. But 
over 30 of those 82 State agency partners have formally 
notified the Rehabilitation Services Administration, our 
Federal administering partner, that they don't have the 
resources under the Basic Support Employment program to provide 
all necessary work preparation services to every person with a 
disability who wants to go to work.
    The Council of State Agencies for the Blind supports an 
additional investment in the Basic Support program of $700 
million to make it possible for all persons with disabilities 
to go back to work, like Ms. Gretz who just sat here andsaid, 
``I would like to go back to work and I can't work.'' Well, we would 
like to get our hands on her, okay, because she probably can work. She 
just doesn't think that yet, and these programs make it possible for 
people who think they can't go back to work because they have got 
disabilities to be able to get back into the work force in some way, 
shape, or form. We would like that chance in the Basic Support program, 
and we think additional money will help with that.
    As documented in program evaluations and countless 
testimonials, services for older individuals who become blind 
have allowed older blind Americans to live independently in 
their own homes and communities. And the program has helped 
these older individuals regain self-confidence, self-reliance, 
and self-worth by providing them with opportunities to learn 
the skills needed to perform the most basic tasks of daily 
living and to remain active in and be contributing members of 
their community. Services include a plethora of items on how to 
travel safely, communication skills, activities of daily 
living, low vision services and adaptive devices and so forth. 
The goal of these services is to reduce the need for costly 
support services such as nursing home placement based on the 
person's visual impairment.
    Two-thirds of all legally blind persons are over the age of 
55; 11.169 million, the current amount available for older 
Americans who are blind, does not begin to touch the need for 
knowledgeable, quality services for the current population, 
much less prepare for the dramatic changes in the demography of 
aging on the horizon.
    We urge you to take this opportunity, through the 
appropriations process, to expand and make possible a 
nationwide service delivery program which is adequately funded, 
delivers what it promises, and which truly makes a significant 
difference in the lives of older Americans who are blind. The 
National Council of State Agencies for the Blind supports an 
investment of $26 million to realistically begin addressing the 
potential of older Americans who are blind.
    Mr. Chairman, that concludes my remarks. I would be happy 
to answer any questions that you might have.
    [The prepared statement of Gary Haug follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. Mr. Haug, thank you very much for your 
testimony. I said this yesterday, but my wife's mother has 
retinitis pigmentosa. She is legally blind and has been for 20 
years maybe. So we are aware of the problems and the needs. 
Thank you for your testimony.
    Mr. Haug. Thank you for the opportunity.
                              ----------                              

                                         Wednesday, April 14, 1999.

             NATIONAL FOUNDATION FOR ECTODERMAL DYSPLASIAS


                                WITNESS

MARY KAYE RICHTER, EXECUTIVE DIRECTOR
    Mr. Porter. Our next witness is Mary Kaye Richter, 
Executive Director, National Foundation for Ectodermal 
Dysplasias.
    Ms. Richter. From Mascoutah, Illinois, which is not part of 
your district but certainly a part of the great State of 
Illinois.
    Mr. Porter. Absolutely.
    Ms. Richter. It is a pleasure to be here. I want to talk a 
little bit about some of the exciting things that have happened 
in the lives of the families who are affected by ectodermal 
dysplasias. The ectodermal dysplasias are genetic conditions 
that are identified by abnormalities and derivatives of the 
ectoderm. The syndromes range in their effects from mild to 
devastating. The most common syndrome is hypohidrotic 
ectodermal dysplasia which is identified by sparseness of hair, 
absence of sweat glands, and many missing teeth.
    In spite of the fact that Charles Darwin identified these 
conditions more than a century ago, progress and our 
understanding of the conditions was virtually nonexistent until 
recent years. Little was known. The prognosis was poor and 
families were left to fend for themselves.
    Our quest for better understanding of these conditions 
began with a dental implant program at the National Institute 
of Dental Research in 1986. For children with few teeth, dental 
implants ultimately become a life-changing therapy. Imagine 
beginning to wear dentures at the age of two. The dentures can 
slip and slide and easily fall out. While most children learn 
how to accommodate the wearing of the dentures, the problem 
exacerbates as the wearing of dentures leads to further 
deterioration of the jawbone.
    It was through the implant project at the NIDCR that we 
learned that not only did dental implants work, they worked 
extremely well.
    More recently, another critically important project was 
undertaken by the NIDCR which determined the identification of 
the gene responsible for hypohidrotic ectodermal dysplasia. 
Through work at the University of Oregon, Washington University 
in St. Louis, and the University of Helsinki in Finland the 
gene has been identified. The identification of the gene means 
that women who may be at risk for carrying the gene can receive 
determination of that fact.
    For years I have wondered if our daughter carried a copy of 
the gene that has affected her younger brother. I feared that 
what my chromosomes had done to my son may also have affected 
her. I worried she would be at risk for passing on a gene to 
her children which would forever impact their lives in very 
challenging ways.
    DNA samples from each member of our family were sent 
toPortland where they were analyzed to determine what the status of our 
daughter might be. Two weeks ago I received a call which indicated that 
my two sons had both inherited the same X chromosome from me and that 
my daughter had inherited the other. The tests verified that my 
affected son was a new mutation and not at all the recipient of an 
unwanted genetic gift from me. And now my daughter can approach her 
wedding in November without fear of passing on this particular birth 
defect to her children.
    From the bottom of my heart I want to thank you for the 
funding that made this test possible and for the joy this good 
news has brought to our family.
    The unfortunate thing is that this is only one kind of ED 
and there are at least 150 others. So, given the expanding role 
of the Dental Institute, we concur with groups like the 
American Association of Dental Research and the American 
Association for Dental Schools who have requested a 15 percent 
increase in funding for the NIH, including the NIDCR, bringing 
that institution's funding level to $276.5 million.
    We are also looking to researchers at the National 
Institute for Arthritis, Musculoskeletal, and Skin Diseases to 
unlock the mysteries of non-functioning sweat glands, hair 
follicles, and poorly developed nails. Making certain that 
NIAMS has sufficient funding to reach its goals is the first 
step in that process. We are in total agreement with other 
agencies that have testified on behalf of NIAMS that a 15 
percent increase in that institution's funding to a level of 
$354 million is critical.
    Of equal concern is funding for the Office of Rare Disease 
Research. Finding resolution for problems associated with rare 
conditions is extremely difficult, often futile, and frequently 
life-threatening. How much better it would be for all patients 
affected by rare conditions, and their physicians, to have a 
single repository for rare disease information, including that 
on treatment, prognosis and research.
    Another program of great interest to us is the General 
Dentistry and Pediatric Dentistry Residencies. Our families 
depend on access to well-trained dentists who can meet the 
unique challenges presented by toothless children. Well-trained 
dentists are key to treatment success.
    What is so extraordinary about the general dentistry 
residency training program is that 87 percent of those dentists 
enrolled remain in private primary care practice. Pediatric 
dentistry training programs have not expanded in the last 20 
years despite increased societal needs.
    Consequently, I ask that the subcommittee appropriate $8 
million in funding for the General and Pediatric Dentistry 
programs. I believe strongly that the scientific community 
housed within each institute should be the ultimate authorities 
on the spending of tax dollars for medical research. I ask for 
your thoughtful consideration of funding for the NIDCR of 
$276.5 million, $354 for the NIAMS, $8 million for the General 
and Pediatric Dental Residencies Program, and $25 million for 
the Office of Rare Disease Research.
    There are no possible words for me to say thank you. You 
have given our family the most priceless of all gifts. And we 
will be forever grateful. Thank you.
    [The prepared statement of Mary Kaye Richter follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. Ms. Richter, how old is your son?
    Ms. Richter. Our youngest son because we have two sonsour 
youngest son who is affected by ED is going to be 21 two weeks 
from today. He is a junior at Southern Illinois University at 
Carbondale.
    Mr. Porter. Is there evidence the other direction in the 
genetic chain ancestry?
    Ms. Richter. No, not for our family. But there was no way 
to know what the future for us was, because genes can hide for 
generations in families and then just happen, and so there was 
no way for us to know. And as a director of the organization, I 
tell mothers all the time, there is no need for you to feel 
guilty about this thing because you can't control the genes 
that you pass on.
    Mr. Porter. No, of course not.
    Ms. Richter. But I don't know a mother who doesn't.
    Mr. Porter. I suppose, but they shouldn't. Thank you very 
much for your testimony.
    Ms. Richter. Thank you.
                              ----------                              

                                         Wednesday, April 14, 1999.

                     NATIONAL JOB CORPS ASSOCIATION


                               WITNESSES

DICK SCHUBERT, VICE CHAIRMAN, DRUCKER FOUNDATION DIXIE AXLEY, VICE 
    PRESIDENT, STATE FARM INSURANCE
    Mr. Porter. Dick Schubert, Vice Chairman, Drucker 
Foundation and Dixie Axley, Vice President of State Farm 
Insurance, testifying on behalf of the National Job Corps 
Association.
    Mr. Schubert. Thank you, Mr. Chairman. I couldn't help but 
think of the responsibility you have, the empathy that I have 
for you here in these many dramatic needs for support. We will 
be brief and I hope concise. I am here as Chairman of the Board 
of National Job Corps Association and my colleague, Dixie, is 
going to start the presentation and then I am going to pick up, 
and then we are going to finish and do it within the time 
limits provided. I should note, however, Dr. Benshoff mentioned 
Paul Simon, and he is also on our Board and sends his greetings 
to you.
    Dixie?
    Ms. Axley. The National Job Corps Association is comprised 
of organizations that operate Job Corps centers or 
organizations that support the concept and the reality of the 
Job Corps. I am proud to work for State Farm Insurance and also 
proud to serve on the Board of the National Job corps 
Association. I support Job Corps, but especially in this tight 
labor market, I find additional reasons to support and 
encourage their work. Whether you are the mom-and-pop corner 
grocery store or State Farm Insurance, selling more auto 
insurance and homeowners insurance than anybody in the world, 
every business has struggled with the costs of staff 
recruitment, training, and the very high cost that turnover 
brings us.
    Employers know that Job Corps is a valuable investment 
because it prepares students to succeed at work. Job Corps does 
teach trades but, more important, it teaches crucial 
employability skills: how to keep a job, how to show up every 
day on time every day.
    Mr. Schubert. Mr. Chairman, we are here to discuss four 
serious issues that we believe undermine our $1.3 billion 
national investment in training, almost 70,000 youth in more 
than 100 Job Corps centers each year. The first, and I believe 
the most critical issue, is grossly inadequate salaries for the 
staff of those who help Job Corps center students to succeed. 
As you know, and you have been a supporter of Job Corps since 
you have been in the Congress, Job Corps aims to place its 
students in jobs earning $8 or more per hour. It is important 
that you recognize, Mr. Chairman, that many of the staff 
members of Job Corps centers don't make $8 an hour themselves, 
so I suggest you consider this scenario. You are a vocational 
instructor. Can you choose to work year round at Job Corps with 
at-risk youth and all the challenges that that attends? If the 
organization that hires you fails to meet ever-increasing Job 
Corps performance standards, it will lose its contract and you 
probably will lose your job. Or you can work at the local 
school. You will be paid more. You will work 9 months a year. 
Job security and benefits are virtually guaranteed. Tough, 
tough choice.
    Low wages have contributed to turnover as high as 50 
percent in some Job Corps centers. Staff are leaving Job Corps 
centers because they simply can't afford to support their 
families on the wages they receive. As many as 10 percent of 
some job positions across the centers are unfilled, because 
nobody meets the minimal qualifications that the salaries 
offer. Job Corps itself has an interesting anomaly with regard 
to pay. As you know, 28 centers are operated by GS scale 
Federal employees. They are operated by Federal agencies. A 
vocational instructor at a Federal center earns 24 percent more 
than the private sector contract center counterpart. So it is 
not surprising that the vocational instructor turnover at 
contract centers is 17 percent, almost four times as much as it 
is in a Federal run agency. Dixie has described the cost of 
turnover to business, but the cost is measured in more than 
dollars, it is measured in not changed lives. That after all is 
the objective and the mission of the Job Corps program, to 
change lives.
    Youth come to residential centers to leave unstable 
neighborhoods and turn their lives around. Stability and 
mentoring are crucial to their success, but all of that is 
undermined by the escalating costs and the de-escalating 
salaries and compared to those costs. The President's budget 
provides a $6 million raise for academic teachers only.
    We desperately need another $21 million to raise 
uncompetitive salaries for equally vital staff and other 
positions. These two funds, this request and three others that 
Dixie is going to mention, were cut from the budget despite 
what we know was a strong appeal by the Secretary of Labor.
    Ms. Axley. Let me turn to the second issue now, the issue 
of business involvement, Job Corps celebrates its 35th birthday 
this year. And we were surprised but pleased for the first time 
in that history Congress is requiring each center to establish 
a business and a community liaison. This person will be the 
connection to the Job Corps that the people in the business 
community have wanted and needed for a long time. Regrettably 
it is an unfunded mandate in the President's budget.
    I ask the committee to provide $15 million for this new 
position. It is a comparatively small price tag to assure a 
$1.3 billion job training program captures vitally needed 
employer input.
    Our third request deals with the student follow-up and 
support aspects of our program. Employers want to hire people 
who will succeed in and stay in their jobs. That is why 
Congress has almost quadrupled the period of time during which 
Job Corps must support former students and help them adjust to 
the workplace. They provide follow-up, case management, 
transportation assistance, and other services for a full year.
    This is a wise investment in making sure that Job Corps 
students find and keep good jobs. But the President's budget 
provides only $4.50 per student per week for the placement, 
counseling and support that helps those students stay employed. 
Job Corps' placement staff already work with 115 or more 
students each. If their caseloads increase, students simply 
won't get the case management that helps them succeed at work 
and stay in their jobs.
    An additional $12 million, less than 1 percent of the 
program's total budget, seems a small price to help students 
stay in their jobs and use the training that we have as 
taxpayers have invested so much to give them.
    Mr. Chairman, the fourth request I cannot present in detail 
today. I know you are aware of the problems that lack of child 
care poses for some of our Job Corps students and our proposal 
to build Head Start programs at some of our Job Corps centers. 
That is a request that is detailed more fully in our written 
testimony.
    Mr. Chairman, I know that you know that the contractors who 
run Job Corps centers are businessmen and businesswomen. They 
recognize the budget constraints you are facing, and asbusiness 
owners they also understand that productivity and efficiency 
improvements can only go so far, and at some point any business that 
takes on new responsibilities and new objectives must have the 
resources to achieve them.
    Mr. Schubert. Mr. Chairman, Job Corps has a 35-year record, 
we believe, of proven success. It is the only Federal program 
that reaches down to the most disadvantaged, does not cream and 
gives these young people a shot and a chance. But it can meet 
the standards Congress has established in the new legislation, 
which I think is appropriate legislation authorized by the 
Congress, without your help.
    On behalf of the association, we urge you to consider these 
requests. Thank you, sir.
    Mr. Porter. Well, we are and have always been great fans of 
the program. We think it helps those most in need of the help 
and takes people out of environments where success is perhaps 
impossible in most cases and brings them to the place where it 
is very possible and often is the result. I don't want you to 
spend a lot of time paying attention to the President's budget.
    The President I am afraid drew a very cynical document and, 
in fact, if you look at all the things that Congress has put at 
a high priority, he has put them at a very low priority. That 
permits because and he said this to me directly, he said, oh, 
we know you are going to take care of that. That is not the way 
to draw an honest budget. He should work with us instead of at 
cross purposes and, of course, that allows him to raise other 
accounts and in effect send a fine political message to other 
interests.
    We don't think that is the way of the budget and we don't 
pay any attention to the President's budget very frankly in 
many respects. So don't worry about that. We value Job Corps 
very highly, and we are going to do our best to provide the 
resources that you believe are needed.
    Thank you very much for coming.
    Mr. Schubert. Thank you.
    Ms. Axley. Thank you.
    [The prepared statement of Dick Schubert follows:]

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                                         Wednesday, April 14, 1999.

            NATIONAL ASSOCIATION OF COMMUNITY HEALTH CENTERS


                                WITNESS

DALE GALASSIE, EXECUTIVE DIRECTOR OF THE LAKE COUNTY HEALTH DEPARTMENT 
    AND COMMUNITY HEALTH CENTER
    Mr. Porter. Finally last and not least, Dale Galassie, 
Executive Director of the Lake County Health Department and 
Community Health Center, testifying on behalf of the National 
Association of Community Health Centers. Dale, it is good to 
see you.
    Mr. Gallagher. You too, Mr. Chairman.
    Mr. Porter. You have been very patient.
    Mr. Galassie. We have been, and it is always our pleasure 
to be. And I think in deference to understanding your 
commitment and support of community health centers, actually, I 
am going to defer a formal reading of what we have submitted in 
recognition of the lateness of the hour, and tell a quick story 
if I may.
    As you may recall, the Lake County Health Department 
Community Health Center has been providing primary care for 30 
years. We provide about 74,000 visits to about 12,000 patients, 
now that we are an FQHC, federally qualified health center. We 
became an FQHC in 1995, and you have visited our facility on 
more than one occasion. I can tell you having been in this 
position with the Health Department and now Community Health 
Center for now 17 years, the FQHC status has made us a much 
more comprehensive provider.
    The services we deliver now to the communities that you 
very much are aware of in your districts receive very 
comprehensive care as a result of the full-time providers, 
relationships we have with the hospitals. I am, as you 
mentioned, representing the National Association of Community 
Health Centers, who are asking for your support for a $100 
million increase in fiscal year 2000.
    The health centers have seen about a 1 million increase in 
uninsured in the last 3 years; that 100 million individuals is 
not decreasing, as you know. In Lake County, we estimate we 
have about 70,000 uninsured, and we have about 26,000 Medicaid. 
The Health Department and Community Health Center are clearly 
the largest providers serving that population today. Last year 
alone, we saw an increase of about 19 percent in Lake County in 
the uninsured population that we are serving.
    We provide about $4 million of local taxes to primary care 
in Lake County, as you are aware. I think the most significant 
problem facing us, in addition to requesting the $100 million 
increase, is the problem as compounded by the phaseout of the 
reimbursement of reasonable costs. That is our primary concern 
and certainly my primary concern.
    If the phaseout is not reversed or amended in some way, 
shape or form, in the next 5 years, Lake County will lose 
almost $2\1/2\ million in funding. That equates to about 8,000 
persons being served. That reduction nationally is about $50 
million a year, I am sorry, 50 million in the first year, and 
it equates to about $500 million by about 2004.
    Only having been in the FQHC business for 4 or 5 years, I 
just don't understand how this system, this provider network is 
going to be able to survive that type of reductions. We greatly 
appreciate your support and the committee's support in 
increasing last year $100 million to the appropriation; 
regretfully the needs continue to arise.
    I think we have a very efficient and effective and 
accountable delivery system at the local level. I ask you to 
consider supporting the $100 million increase in fiscal year 
2000 and in some sort of an amendment or an amendment or a 
reversal of the phaseout of the reimbursement of reasonable 
costs.
    Again, I thank you for this opportunity, and I appreciate 
the support we have seen so far.
    Mr. Porter. Dale, thank you for your testimony. We are 
going to do the best we can to address the issues that you have 
raised. I don't believe that I have authority to address the 
one though.
    Mr. Galassie. No. That is correct.
    Mr. Porter. I think that is an authorizing matter, is it 
not?
    Mr. Galassie. It is an authorizing matter.
    Mr. Porter. Yes. And as I said, I don't know whether you 
were here then, but we are avoiding as much as we possibly can 
doing anything in the authorizing area and insisting that the 
authorizers do their work to address these problems. So I don't 
think we are going to be able to help with that. But we will do 
our best to provide the additional funding.
    Mr. Galassie. The association is working diligently in that 
regard as well. Again we appreciate your support.
    Mr. Porter. Thank you, Dale. It is good to see you.
    Mr. Galassie. Thank you. You, too.
    Mr. Porter. The subcommittee stands in recess until 10:00 
a.m. tomorrow.
    [The prepared statement of Dale Galassie follows:]

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                                         Wednesday, April 14, 1999.

                AMERICAN ASSOCIATION FOR DENTAL RESEARCH

                                WITNESS

JOHN M. CRAWFORD, BDS, PH.D., PROFESSOR OF CLINICAL PERIODONTICS, 
    COLLEGE OF DENTISTRY, UNIVERSITY OF ILLINOIS AT CHICAGO
    Mr. Porter. The subcommittee will come to order.
    We continue with our third panel of public witnesses. We 
are going to have 10 panels.
    The staff wants me to remind witnesses of two provisions of 
the House Rules. In addition to their written statement, 
nongovernmental witnesses must submit a curriculum vitae and a 
statement of Federal grant or contract funds that they or the 
entity they represent have received. If you have any questions 
concerning the applicability of this provision or questions as 
to how to comply, please contact the subcommittee staff.
    In order to accommodate as many members of the public as 
possible, we have scheduled over 20 witnesses for each session 
and are still not able to hear from all who want to testify. 
Overall, we will hear from over 200 witnesses in these 10 
panels. As a result, I have to strictly enforce the rule 
limiting testimony to 5 minutes and would ask that, as you 
testify, you keep in mind limitation in consideration for the 
other witnesses that must follow you.
    I would also tell you that our last witness of the day is 
Christopher Reeve, who will be testifying for the committee 
scheduled at 11:30. Based upon our information from yesterday's 
hearing, he probably will be considerably later than that.
    There is presently a vote on in the House of 
Representatives, but considering that we have so many 
witnesses, I am going to not cast a vote and simply proceed 
right now.
    Our first witness is Dr. John M. Crawford, BDS, Ph.D., 
Professor of Clinical Periodontics at the College of Dentistry, 
University of Illinois at Chicago. He is going to testify on 
behalf of the American Association for Dental Research.
    Dr. Crawford. It is nice to see an Illinoisian.
    Dr. Crawford. Thank you. Mr. Chairman, I am here today to 
represent the 5,300 members of the American Association for 
Dental Research. I would like to discuss the year 2000 budget 
for the National Institute of Dental and Craniofacial Research.
    Dentistry is changing rapidly. Our focus is now on health, 
and it is not limited to repair of dental tissues. Our focus is 
the face and the body, rather than just the mouth. This broader 
responsibility is reflected in the name change from the 
National Institute of Dental Research to the National Institute 
of Dental and Craniofacial Research. Thank you for initiating 
this name change which is implicit of the broader scope of the 
institute.
    The Centers for Disease Control have just announced the 10 
most significant public health measures of the 21st century. 
Included in this is fluoridation of the Nation's water supply. 
Can oral science contribute to this list in the 21st century? I 
would like to briefly discuss three areas which I think may, in 
fact, make this list.
    Firstly, the diagnosis and prevention of craniofacial 
deformities. Approximately a quarter of million people in the 
U.S. are born with some sort of defect, and three quarters of 
these affect the craniofacial region. This costs the Nation 
approximately $1,000,000,000 a year.
    The NIDCR-funded scientists are at the forefront in 
analyzing the genetic basis of these diseases; and, given 
sufficient funds, I believe that we are on the verge of 
significant breakthroughs in the diagnosis and prevention of 
these disorders.
    Secondly, linking oral health to systemic health. At the 
turn of the century in 1999, 50 percent of heart attacks, the 
leading killer in the western world, and 25 percent of low 
birth rate babies have no traditional risk factors associated 
with them. But we now have evidence that oral disease, 
particularly gum disease, is a strong risk factor for heart 
attacks and low birth rate babies. In fact, the risk factor for 
gum disease in heart attacks is as strong as high cholesterol 
and smoking.
    Care of low birth babies costs us $5,000,000,000 annually. 
If we can lower the incidence of low birth rate babies by 
treating gum disease, it will mean that 1 in 10 babies in this 
country have a better chance of a good start in life.
    The third area I would like to discuss are the disparities 
between different racial groups and different income groups in 
oral health, which are just as strong as the disparities in 
systemic health. In our inner city dental school in Chicago, I 
see this on a daily basis in our clinics.
    Enormous gains in this area can be achieved by investment 
in behavioral science, in epidemiology and in health services 
research; and, in this, the agency for health care policy and 
research can help us enormously by funding projects that 
analyze dental effectiveness in care. Therefore, I would 
support an increase in funding level to $225,000,000 for this 
agency.
    Let me mention three research projects that we have 
recently had in our Clinic and Research Day at the university 
to illustrate how boundaries between oral science and medical 
science have now really disappeared.
    The first one examined the little molecular motors which 
enable cells to move in organ development and tissue 
development; a second study analyzed how viruses, which need to 
live in living cells, can actually trick the living cells into 
living longer; and the third investigated protein regulation 
and blood clotting.
    These three studies illustrate that when the government 
invests in the National Institute of Dental and Craniofacial 
research it not only invests in oral science but invests in 
projects which investigates very significant systemic problems 
like cancer, tissue development and blood clotting.
    Mr. Chairman, the AADR supports the proposal of the ad hoc 
group for medical research funding which calls for a 15 percent 
increase in the National Institutes of Health for fiscal year 
2000; and specifically we request the sum of $276,518,000 for 
the National Institute of Dental and Craniofacial Research.
    On behalf of the AADR, I thank you for this opportunity to 
testify; and I will be happy to answer any questions that you 
may have.
    Mr. Porter. Dr. Crawford, thank you for your testimony. We 
hope to reach the level that you have suggested. It is going to 
be a difficult, very difficult proposition this year to do so 
within the budget caps, but we are going to do our best to 
achieve it. We thank you for coming here to testify this 
morning.
    Dr. Crawford. Thank you for listening, sir.
    [The prepared statement of John Crawford follows:]

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                                         Wednesday, April 14, 1999.

                 NEW YORK UNIVERSITY SCHOOL OF MEDICINE


                                WITNESS

ROBERT GLICKMAN, MD, DEAN
    Mr. Porter. Next is Dr. Robert Glickman, MD, Dean of the 
NYU School of Medicine. Dean Glickman.
    Dr. Glickman. Good morning, Chairman Porter. I am Robert 
Glickman, the new dean of the New York University School of 
Medicine. It is an honor to be here today to discuss a few of 
the exciting initiatives under way in our school, as well as to 
share my views regarding fiscal 2000 appropriations.
    On behalf of the NYU School of Medicine, I want to begin by 
thanking you and the subcommittee for your leadership and 
increasing funding for the National Institutes of Health and 
for recognizing the importance of strong Federal investment in 
biomedical research. Such investment represents new treatments 
and cures that will eradicate today's disorders and have some 
promise for diseases of the future.
    For fiscal year 2000, the NYU School of Medicine supports a 
recommendation of the Ad Hoc Group for Medical Research 
Funding, which calls for an appropriation of $18,000,000,000 
for the National Institutes of Health. Sustained, stable growth 
in the NIH is necessary to build on past scientific successes, 
address present medical needs and anticipate future health 
challenges.
    The NYU School of Medicine takes pride in the history that 
goes back to 1837 and includes the initiation of and 
participation in many major events in American medicine through 
two centuries.
    I would like to highlight two exciting initiatives that are 
under way at our school and that provide a snapshot of our 
commitment to providing a unique atmosphere of public service, 
the highest quality of medical care for the underserved, as 
well as distinguished research and superior medical education. 
Both of these initiatives are being invested in significantly 
by our school.
    The school is developing a comprehensive program in women's 
cancer. This program will be an integral component of the 
Kaplan Comprehensive Cancer Center and will encompass the full 
spectrum of clinical services, advanced training and some 
fundamental and translational research into those cancers that 
primarily affect the female reproductive tract.
    The components of this program include etiology and 
biology, risk identification and prevention, screening, 
diagnosis and treatment, palliation and rehabilitation and 
psychosocial support. The program proposed will consolidate 
these services in one area that will result in less stress for 
the patient and consultation opportunities among the many 
physicians participating.
    The school is seeking $10,000,000 in support for this 
program from the subcommittee through the health resources and 
service administration's health facilities construction 
account. The school is also working with the Steven Hassenfeld 
Children's Center to launch a model integrated and 
comprehensive treatment program for children with cancer, 
particularly brain tumors. Brain tumors are the leading cause 
of cancer-related deaths in children and adolescents in North 
America and Europe. Current estimates suggests that there will 
be 200,000 pediatric cancer survivors by the turn of the 
century, yet currently there are few comprehensive care 
programs that support children and their families over the long 
term and none that serves a large, economically disadvantaged 
population.
    Over 40 percent of our center's patients are 
underrepresented minorities, and more than half are uninsured 
or insured through Medicaid. This program will connect access 
to specialty care, to social and psychological services for 
children with brain tumors. School-related problems are four 
times more frequent in pediatric cancer patients than in 
healthy children and often include specific learning 
disabilities with underlying deficits in essential cognitive 
processing that limit the survivor's ultimate educational 
attainment and vocational level.
    The school is seeking the subcommittee's support of 
$2,000,000 through the Department of Health and Human Services' 
Office of Minority Health account for this demonstration 
program, which we believe will serve as a national model for 
providing comprehensive care to children with brain tumors.
    Thank you again, Mr. Chairman, for affording me this 
opportunity to describe these programs and to appear before 
you.
    Mr. Porter. Dr. Glickman, thank you for your testimony.
    There is no reason why you might know this, but 2 years ago 
right about this time I was a patient, an outpatient, in your 
medical center in New York City seeing Dr. John Sarno about the 
terrible back problems I was experiencing.
    Dr. Glickman. I hope they are gone.
    Mr. Porter. They are not only gone, they are gone without 
surgery, even though I had 4 months of extreme pain.
    Dr. Glickman. Wonderful.
    Mr. Porter. Dr. Sarno in fact came down and testified 
because we had a panel on alternative therapies, not just for 
backs but generally; and he came down and testified later that 
year. And so I have a great fondness for NYU Medical Center and 
your school. So thank you for coming
    Dr. Glickman. Thank you.
    Mr. Porter. Thank you for testifying this morning.
    [The prepared statement of Robert Glickman, M.D., follows:]

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                                         Wednesday, April 14, 1999.

                         SOCIETY OF TOXICOLOGY


                                WITNESS

STEVEN D. COHEN, D.SC., PRESIDENT
    Mr. Porter. Our next witness is Dr. Steven D. Cohen, 
President of the Society of Toxicology.
    Dr. Cohen. Good morning, Mr. Chairman.
    Mr. Porter. Good morning, Dr. Cohen.
    Dr. Cohen. I, too, thank you very much. I appreciate this 
opportunity to present the views of the Society of Toxicology 
in support of fiscal year 2000 funding for the NIH and 
specifically for the National Institute of Environmental Health 
Sciences, the NIEHS.
    The Society of Toxicology, SOT, is a professional and 
scholarly organization with over 5,000 members in academics, 
industry, and government. Our members include many of the 
world's leading experts in the field of toxicology.
    A major goal of the society is to promote the use of good 
science in the regulation and the development of rules that 
control or deal with environmental risk issues. We believe that 
the combination of sound science and sound judgment is the best 
way to address these environmental risk issues. To this end, we 
work closely with the National Institute of Environmental 
Health Sciences in the conduct and support of environmental 
health-related research. We are appreciative of the outstanding 
research efforts of NIEHS and are supportive of the research 
priorities identified by the Institute's director, Dr. Kenneth 
Olden.
    We have provided a few examples in our written testimony of 
important research that has been supported by NIEHS. Such 
research is helping us to better understand how the environment 
effects our health and has guided appropriate remedial action, 
at least as such areas as air pollution, dealing with lead 
poisoning in children and so forth.
    Exciting new research includes such things as NIEHS' 
environmental Genome Project through which we will eventually 
better understand why some people are more susceptible to 
environmental hazards than others. Also, new, innovative 
transgenic animal models of diseases will permit more efficient 
toxicity testing; and these models are being developed at NIEHS 
through the National Toxicology Program.
    SOT also supports NIEHS' research on the potential adverse 
effects of the very diverse group of chemicals that are 
commonly referred to as endocrine disrupters, and these have 
been much in the news over the past few years. These agents are 
alleged to have an effect on thyroid and reproductive function 
and development. We are pleased that NIEHS is proceeding with 
studies to examine the linkage between exposure to such 
chemicals and diseases affecting women's reproductive health.
    It is important to note that there is diverse scientific 
opinion as to the extent that such environmental agents truly 
do effect human health or the environment. Therefore, such 
studies are very important.
    The Superfund basic research program is administered by 
NIEHS with pass-through funding from the EPA. This important 
collaboration between the two Federal agencies will ensure that 
environmental cleanup decisions for a large number of Superfund 
hazardous wastes sites that are across the country, that such 
cleanups based on sound environmental health science.
    The Superfund program supports basic research on possible 
relationships between environmental contamination and cancers, 
such as breast and prostate, and birth defects and other 
diseases. These programs at 69 universities across the country 
bring together uniquely biomedical scientists and engineers to 
provide the science base needed to make accurate assessments of 
human health and environmental risks and to develop the best 
prioritization for cleanup of these problem sites.
    In conclusion, the members of the Society of Toxicology 
strongly believe that our national investment in biomedical 
research must be increased and sustained over the long term. 
This will permit us to take advantage of the many exciting 
research opportunities that exist in the environmental health 
sciences. The Society strongly supports efforts to double 
funding for the NIH by fiscal year 2003. To accomplish this, we 
urge your committee to support the recommendation of the Ad Hoc 
group for biomedical research funding calling for a 15 percent 
increase for NIH in fiscal year 2000.
    We also urge the committee to provide a corresponding 15 
percent increase for NIEHS, given the enormous role it plays in 
expanding our understanding of how the environment may affect 
our health. Whether it is exploring asthma incidents in 
children, testing the toxicity of environmental chemicals or 
better understanding the genetics underlying environmental risk 
factors, NIEHS supporter research is leading the way to bridge 
the gap between public policy and environmental health science.
    Thank you very much for all you have done for environmental 
health science and for this opportunity to testify. I would be 
happy to answer questions you may have.
    Mr. Porter. Dr. Cohen, thank you very much. Your timing was 
absolutely perfect.
    [The prepared statement of Dr. Steven D. Cohen, follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. Let me ask you a question about PVC polyvinyl 
chloride. Have there been studies as to its effect on human 
health or are there studies going on now?
    Dr. Cohen. PVC I don't believe has been studied as 
extensively as the vinylchloride monomer which is what is used 
to make the polymer, the plastics. You start with the single 
molecule. The vinyl chloride we know is the carcinogen. No 
question about it. The big issue in my field in toxicology is 
that the dose is what makes the poison, and we feel very 
strongly as an organization, as professionals and as scientists 
above all, that it is really the dose that determines it.
    The direct answer to your question is, I don't know that 
there are studies ongoing of the polymer, of the plastic bags. 
I am aware of the controversy.
    Mr. Porter. The question really wasn't a fair one, but I 
thought you might be aware of that.
    Let me tell you that Representative Pelosi and myself are 
working together. We are going to have a special hearing after 
our regular hearings are completed, probably sometime in May or 
early June, on environmental health in children, children's 
health. And we are going to be working with EPA, with NIEHS and 
with CDC to put together a very focused panel on this and try 
to bring some attention to the importance of these issues, 
which is really your field.
    Dr. Cohen. Right. We have been in communication 
specifically with EPA on a number of issues regarding health 
lately, as well as FDA; and certainly we partner with NIEHS. 
And if my organization can help in terms of nominating experts 
who might consult for your panel, assist your panel, we would 
be happy to do so.
    Mr. Porter. Thank you very much, Dr. Cohen.
    Dr. Cohen. Thank you.
                              ----------                              

                                         Wednesday, April 14, 1999.

                            HAYMARKET CENTER


                                WITNESS

ANTHONY COLE, VICE PRESIDENT
    Mr. Porter. Our next witness is Anthony Cole, the Vice 
President of Haymarket Center and a good friend from Chicago--
--
    Mr. Cole. Yes.
    Mr. Porter [continuing]. Who I have known for some time. It 
is nice to see you. Thank you for coming to testify.
    Mr. Cole. Thank you very much, Mr. Chairman. I can just 
tell you I must use my glasses. Some people here would say, 
join the crowd.
    Thank you, Mr. Chairman, for providing Haymarket Center 
with the opportunity to present testimony. As you said, I am 
Anthony Cole, Vice President of Haymarket Center, a 
comprehensive substance abuse treatment facility located on 
Chicago's near west side. We were founded in 1975 by Monsignor 
Ignatius McDermott. Haymarket Center currently offers 
integrated treatment services to an average of 13,000 clients 
annually, making us the largest drug abuse treatment center in 
the City of Chicago in Cook County.
    Over the past 24 years, we have remained committed to 
providing each of our clients with the maximum chance for 
sustained recovery from addiction, a goal which we achieve by a 
continuum of care to every client. This continuum is the 
integration of drug abuse prevention, treatment, health 
services, day care, parent training, vocational education, job 
placement and screening for domestic violence and gambling 
addiction.
    Mr. Chairman, the treatment community is working to better 
understand which treatment methods are most effective to 
particular subgroups of abusers and addicts. Haymarket, 
therefore, encourages the subcommittee to continue to fund 
knowledge, development and application programs through the 
Center for Substance Abuse Treatment, which is expanding, and 
enhance treatment models for high-risk and hard-to-place 
populations.
    Haymarket recognizes this subcommittee receives no credit 
for savings to taxpayers resulting from increased investment in 
treatment. However, research consistently demonstrates the cost 
effectiveness of treatment, as well as our unnecessary costs 
associated with substance abuse, particularly for addicted 
mothers, produces hundreds of millions of dollars in savings 
resulting from the delivery of drug-free babies. In fact, 
Haymarket Center has delivered over 500 drug-free babies during 
the past 10 years.
    According to a study released in January of 1999 by CSAT, 
every man, woman and child in America pays over $1,000 a year 
to cover the $276,000,000,000 total national costs of untreated 
substance abuse. These costs are associated with lost 
productivity, law enforcement, health care and social welfare.
    Haymarket understands that the Federal Government has 
limited substance abuse treatment and prevention 
resources.While Haymarket Center never turns away an individual seeking 
treatment, we also focus our limited Federal resources on high-risk 
populations such as pregnant and postpartum women and their children.
    Due to the establishment of an on-site health clinic, 
Haymarket has been able to address the variety of medical 
problems which impede our client's treatment progress. We urge 
the subcommittee to encourage CDC and HRSA to continue to work 
with community-based organizations such as Haymarket. Our work 
with these agencies controls the spread of infectious disease 
and reduces chronic disease and other risk factors through the 
integration of preventive and primary health care into 
substance abuse treatment.
    Finally, Haymarket is pleased to report to the subcommittee 
that we have embarked on an exciting new collaboration with the 
Chicago Job Corps Center to integrate vocational education and 
job placement services with substance abuse treatment. The 
collaboration will screen new Job Corps participants for 
possible referral to Haymarket. It would also link graduates of 
Haymarket treatment programs to job training and vocational 
education services available at the Job Corps Center.
    We thank the subcommittee for its past support of this 
effort and ask that the subcommittee urge the Department of 
Labor to continue to encourage Job Corps Centers to coordinate 
with community-based organizations such as Haymarket Center.
    Thank you again, Mr. Chairman, for this opportunity to 
testify. I hope that when you are in Chicago this year that you 
will find the time to visit again with Father McDermott and the 
Haymarket Center clients.
    As a result of yours and this subcommittee's support, we 
are expanding and improving our capacity to help individuals 
successfully recover from the disease of addiction.
    Mr. Porter. Well, you certainly are. When I visited, I was 
very impressed with the work that you are doing. You are 
continuing the kinds of success rates that you have had in the 
past, I assume. And Father Mac is still active?
    Mr. Cole. Seven days a week.
    Mr. Porter. I figure, he is wonderful.
    You are doing a terrific job there; and, obviously, we want 
to do what we can to provide the resources for you and others 
like you that are doing what you are on the front lines of drug 
treatment and child abuse and so many different things.
    And, Anthony, this is a very exciting development with Job 
Corps. We think Job Corps is one of the best programs to move 
people from very high-risk situations into productive, good 
lives; and I think that collaboration is a very, very important 
development that you ought to export to other communities, as 
you said in your testimony.
    Mr. Cole. Thank you very much, Chairman.
    Mr. Porter. Thank you for coming to testify.
    Mr. Cole. Yes.
    [The prepared statement of Anthony Cole follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

                                         Wednesday, April 14, 1999.

                        AMERICAN TRAUMA SOCIETY


                                WITNESS

HARRY TETER, DIRECTOR
    Mr. Porter. Our next witness is Harry Teter, the Director 
of the American Trauma Society.
    Mr. Teter. Good morning, Mr. Chairman. I appreciate the 
opportunity to be here with you this morning and to talk about 
the interests of trauma and American Trauma Society and the 
problems that we are also facing.
    I am Executive Director of the American Trauma Society. We 
are a membership organization. We have roughly 210 of the 
Nation's trauma centers as our members. We have about 2,500 of 
the trauma nurses and doctors that are on the front line of 
fighting trauma every day. As you know, Chicago, too, has one 
of the great trauma centers at Cook County that has led much of 
the work in developing trauma systems across the country.
    We are very happy to be here to make certain comments and 
recommendations regarding the budget.
    I want to say, first off, how pleased we were with the IOM 
study on injury. It was an excellent job. I know that this 
committee and the Congress directed that this be done. I truly 
think you got your money's worth on this one.
    I also want to thank you very much for the support that you 
have given to research at the National Center for Injury 
Prevention and Control and, specifically, the cost-benefit 
study that will soon be started on trauma services.
    We are very much aware in this world of managed care, et 
cetera, that the great shift from payments for services to 
payment for value we believe that will not harm us, ultimately, 
but this study is critical to show the world where the value is 
coming from. And this will be done objectively, and I think it 
is going to be a seminal study. I really appreciate the support 
this committee has given for that study.
    I also would like to thank you for the support of the 
National Center for Injury Prevention and Control. This is 
where the real science of injury is being examined. I believe 
they are the closest thing we can have to an institute, a 
national institute; and I would urge and hope that they would 
be funded and increased just as the centers are done.
    I will soon be able to provide for you a compilation of the 
research being done, not only by this center in Atlanta but by 
the 10 national centers throughout the country that look into 
injury issues; and I will provide that for you within 30 days.
    We do urge that this program, as I say, be funded and 
increased commensurate with the NIH; and I again think that the 
facts and certainly this study justifies that action, because, 
as they point out here, the enormous problem is that injuries 
in this country justifies us looking at it at all levels.
    I also want to thank you for your consideration of funding 
for the national Trauma Systems Development Program. This was a 
program that was renewed last year by the Congress.
    I think, again, the trauma systems are critical to saving 
lives in this country; and I would urge that that program be 
funded at the authorized level of $6,000,000.
    We are very happy with the emergency medical services for 
children and, again, think that these programs combined really 
attack two things--the proper care of the trauma victim and the 
prevention of trauma so we don't even have to get into that 
care system.
    I want to share with you a new program the American Trauma 
Society is doing and urge your help, if we can, on this. It is 
the Trauma Information and Exchange Program. It is to link the 
trauma centers in the country, to take the information that we 
gain from our trauma registries, from the records we keep 
there, to basically improve the quality of trauma care by 
benchmarking, by looking at ways we can better manage trauma.
    This is very critical for us to get there, especially in 
the days when every procedure is being questioned in our care 
of the trauma victim. As you, I am sure, are well aware, when 
we get a trauma victim and start the care, it is very difficult 
to sit back and get second opinions and to wonder whether this 
or that has to be done. We have to save life and this study, 
this work we are doing, I think will convince those that the 
procedures at all the trauma centers are not excessive but 
indeed are well managed and are for the best care of what we 
know to be roughly 8,000,000 plus a year that land in the 
serious area of trauma. We must look after them.
    The American Trauma Society is very unique in that we have 
all the disciplines of trauma. Our trauma registers are the 
people in the hospitals that train on keeping records and 
collecting proper data, so that this trauma information program 
I think will be an extremely important for the country and will 
be a resource to you, to anyone who is interested in the care 
of the trauma victim.
    I would also like to point out another study being done and 
that is for the care of the trauma victims' families. We have 
done a great deal for the care of trauma, but we have yet to 
really address the needs of the families of trauma victims. 
This is a new project the Trauma Society is trying to take on, 
to find out the way we can best help from the minute a family 
has to be notified of a horrific incident, where they are 
called to a hospital, and being able to provide support for 
them.
    The doctors and the nurses who are in the battle to keep a 
life saved must then often have to deal with the families, and 
they need the right talents, the right way in which to do this. 
If not done properly, families disintegrate rapidly in these 
issues, especially with the loss of a life of a young one.
    We would be very happy to talk to the substance abuse and 
mental health services agency, and we would urge consideration 
be given to a small study with them on the effects this has on 
doctors and nurses and how we can do this job better. We have 
just recently had a meeting on this, and it has been very 
powerful.
    But I really believe that the work being done in trauma is 
showing wonderful results. Again, verified by this, we know 
that we need to do more. We are quite willing to do it. It is a 
partnership of all of us, and I really thank you today.
    Mr. Porter. Thank you very much, Mr. Teter. It is 8,000,000 
victims and 200,000,000 more watching ER and Chicago Hope who 
are aware of the good work that you do through those programs.
    [The prepared statement of Harry Teter follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. You should know, I am sure you do, that Mr. 
Dickey, who was originally a great antagonist to injury 
control, is now the great protagonist.
    Mr. Teter. We appreciate the epiphany.
    Mr. Porter. He really has become a very, very strong 
supporter. It is interesting how people's minds can be changed 
with information and communications. And it has been very good 
between CDC and Representative Dickey, and he has become a very 
strong supporter.
    Mr. Teter. We certainly hope that all the committee will 
see the value in that, the work being done there.
    I found it interesting to see the Nation finally believing 
prevention works. And I cite two examples of recently in the 
Washington Post where they said, no question about the work 
done in fire, smoke detection has saved countless lives and 
likewise in the violence area. We are seeing the violence go 
down in homicides, especially to men.
    So the work they are doing at the center needs this urgent 
support. This is why we ask that the $20,000,000 be added to 
the budget.
    Mr. Porter. Thank you very much for your testimony.
    Mr. Teter. We thank you, sir.
                              ----------                              

                                         Wednesday, April 14, 1999.

                        AMERICAN CANCER SOCIETY


                                WITNESS

GERALD LYNN WOLLAM, MD, VICE PRESIDENT AND PRESIDENT-ELECT
    Mr. Porter. We are now only 15 minutes behind our schedule, 
unfortunately; and, again, I would ask that witnesses stick to 
their time limit, if they possibly can.
    Dr. Gerald Lynn Woolam, the Vice President and President-
Elect of the American Cancer Society testifying on behalf of 
the Society. Dr. Woolam.
    Dr. Woolam. Good morning, Chairman Porter.
    The American Cancer Society thanks you and the members of 
the committee for your continuing support for the programs 
which we think will help us eventually to win the war on 
cancer.
    Cancer will soon be the leading cause of death in this 
country, and that is largely because of the unprecedented aging 
and changing demographic profile of our Nation. Older Americans 
account for 61 percent of all the cancers, and that is 61 
percent of all the cancers translates into an astonishing 36 
percent of our overall health care costs in this country. So 
these changes are going to require us to make tough choices 
regarding allocating resources for health care in the future.
    Similarly, unless we address the burden of cancer among 
populations who are not benefiting from current scientific 
advances the minorities, medically underserved and uninsured 
Americans health costs and economic burden will also continue 
to escalate among those groups.
    The good news is that there are a variety of proven 
activities and programs that can make a difference. With your 
leadership, we can chart a new course, one that focuses not 
just on late-in-the-game, beat-the-buzzer kinds of cures but 
increasingly on prevention and earlier detection programs as 
well as access to state-of-the-art treatment, while continuing 
to fund adequate research for cancer cure. The investment we 
ask you to make today pales in comparison to the human and 
economic costs of status quo funding.
    My written testimony details our funding request, but I 
would like to highlight some of those areas of most pressing 
concern.
    First, we must close the gap between those with access to 
high-quality health care and those who unnecessarily suffer and 
die because of lack of access and information. Congress must 
give priority to those agencies and programs which target the 
poor and medically underserved, strengthen and expand our 
public health infrastructure at the community level and ensure 
facilitated access to quality care.
    Second, we must improve data collection and surveillance 
efforts by enhancing the existing programs such as the National 
Program of Cancer Registries, NPCR, and other programs at NCI, 
the National Center for Health Statistics, the Department of 
Defense, and the Indian Health Service. This information gives 
us the tools to determine patterns, monitor trends, guide 
research and develop and target effective interventions.
    The single most important area for long-term savings and 
improved health is a greater focus on prevention and early 
detection of cancer. We know that over two-thirds of cancers 
are preventable and yet we currently invest less than 1 percent 
of our health care dollars on these front-end strategies and 
that includes tobacco, diet and exercise.
    Tobacco use is the most preventable cause of disease, 
disability and death in the United States; and it accounts for 
about a third of all U.S. cancers. But the multistate 
settlement agreement with the tobacco industry which recently 
occurred does not completely take care of this problem. The 
Federal Government continues to have an important role and a 
responsibility to prioritize tobacco-controlled efforts by 
providing increased funding for the CDC's effective national 
tobacco control programs.
    More than half of all cancers occur in sites that are 
accessible to screening, and regular screening of all Americans 
would significantly reduce death from breast, colorectal and 
cervical cancers. Critical programs which we support in this 
area include the CDC's national breast and cervical cancer 
early detection program and colorectal and prostate cancer 
awareness initiatives.
    Finally, our cancer research efforts are paying off with 
remarkable breakthroughs in our understanding and ability to 
combat this disease.
    We support the goal of doubling the NIH budget within the 
next 5 years, funding more grants, developing new treatments 
and prevention strategies. Our Nation's challenge is to reduce 
the gap between what is known through scientific discovery, 
what is practiced by health care professionals and what is 
experienced by patients; and, of course, we stand ready to work 
with you to develop an action plan and appropriate policies to 
move to a world when the burden of cancer is reduced through 
research, prevention and control.
    Thank you again for letting us testify.
    [The prepared statement of Gerald L. Woolam, M.D., 
follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. Dr. Woolam, I certainly don't disagree with 
anything that you said. I very much agree that if we develop, 
through research, new approaches to treatment and they aren't 
known or practiced out there in society, we haven't done 
anything. So, obviously, it is very important that we work on 
the dissemination side. It is very important that we work on 
access. I wish we had in our subcommittee more jurisdiction 
over that subject, but we do have jurisdiction, for example, 
over community health centers, and we have put it at a very 
high priority and plused up funding very greatly there when 
and, very often, particularly in rural areas, the only 
available care is through a community health center for people 
who otherwise wouldn't be treated. So we definitely agree with 
your priorities.
    I wish that the Congress had come to grips with the whole 
tobacco issue. I hope that the administration is going to 
independently, through the Department of Justice, proceed 
against tobacco companies on the Medicare side, because I think 
a great deal of progress can be made if we can bring to bear a 
lot of pressure on the industry; and, unfortunately, we haven't 
done a very good job of that yet.
    Mr. Woolam. We haven't given up.
    Mr. Porter. Good, let's work together on that. Thank you 
very much for your testimony.
    Dr. Woolam. Thank you very much, Mr. Chairman.
                              ----------                              

                                         Wednesday, April 14, 1999.

        AMERICAN LUNG ASSOCIATION AND AMERICAN THORACIC SOCIETY


                                WITNESS

EDWARD R. BLOCK, MD
    Mr. Porter. Dr. Edward R. Block, MD, representing the 
American Lung Association and American Thoracic Society. We 
just said some things that you probably like to hear.
    Dr. Block. Yes.
    Good morning, Chairman Porter. I am Edward Block. I am 
Professor of Medicine at the University of Florida College of 
Medicine; and I am also Associate Chief of Staff of Research at 
the Gainesville, Florida, VA medical center. I am also 
President of the American Thoracic Society, the medical section 
of the American Lung Association; and I am here this morning to 
speak to you on behalf of those two organizations.
    I first want to thank you and the subcommittee for the 
generous support that you have shown for research. Your support 
is making research possible. It is making possible today's 
scientific discoveries and tomorrow's cures.
    I also want to share with you a concern that is held by the 
entire research community. The legislative rider that was 
slipped into last year's Omnibus appropriations bill making 
federally funded research data subject to Freedom of 
Information Act inquiries is bad public policy. This 
legislation rider will compromise patient confidentiality, 
increase research costs, stifle public/private research 
cooperation and could possibly lead to harassment of 
researchers.
    The American Lung Association and the American Thoracic 
Society strongly urge Congress to repel this legislative rider. 
The American Lung Association and the American Thoracic Society 
realize that our request of a 15 percent increase in NIH 
funding and our programmatic, excuse me, that our request of a 
15 percent increase in NIH funding and our programmatic 
increase requests at CDC are impossible under the current 
budget caps. We do pledge ourselves to continue to express our 
strong concern with the budget caps to other Members of 
Congress.
    You have a copy of our written statement and our funding 
recommendations. I would briefly note our call for Federal 
action at NIH and CDC to respond to the growing problem of 
asthma in the United States. While we were pleased that the 
President's budget, which I learned at breakfast this morning 
you don't pay too much attention to anyway, includes funding 
for asthma, we are concerned that the CDC does not play a 
central role in the President's administration response to 
asthma. We strongly urge this subcommittee to provide 
$20,000,000 for CDC to respond to asthma in the United States.
    I would also like to note and acknowledge the recent 
investment into tuberculosis that has been made at the National 
Institutes of Allergy and Infectious Disease and at the CDC. 
Continued resources need to be provided for NIH and for CDC to 
develop new tools to respond to the growing problem of global 
TB and to prevent the development of widespread, multidrug-
resistent tuberculosis in the United States.
    In the few remaining moments, I would like to talk about 
one of my patients named Joyce and how the decisions you make 
here will affect her life.
    Joyce is a 56-year-old mother who suffers from primary 
pulmonary hypertension. This is an uncommon disease that causes 
high blood pressure in the blood vessels of the lung. It 
affects women twice as often as men. Three quarters of people 
with this disease will not survive 5 years. We don't know what 
causes it, and we don't have a cure for it.
    Since being diagnosed, Joyce has had to quit work as a 
hospital administrator. She is no longer able to enjoy the 
outdoors, even to take walks with her friends.
    Her therapy is epoprostenol. This is a vasodilator medicine 
that is administered continuously by a small pump into a large 
catheter that is inserted into her chest. This treatment costs 
her over $60,000 a year. After just about 3 years of treatment, 
Joyce is now on Medicaid. She is housebound. She is tethered to 
a pump, which keeps her alive but doesn't cure her; and her 
only hope of getting any relief is through a lung transplant.
    Recently, investigators supported by the National Heart, 
Lung and Blood Institute have localized the gene defect that 
causes primary pulmonary hypertension, Joyce's disease. Now 
this is a major step forward towards a cure, but it is only the 
first step. Understanding how the gene defect causes pulmonary 
hypertension, using this understanding to target a cure and 
then implementing the cure, are the next vital steps.
    For Joyce, it is a race, and in all likelihood researchers 
will probably not find a cure in time for her. Joyce's only 
hope is to wait for someone to die and give their lungs to her. 
That is a macabre hope. My hope is that, with research support, 
scientists will turn the discovery of the gene defect into a 
cure for pulmonary hypertension, so that the next patient I see 
with this disease will not have to quit their job, will not be 
forced onto Medicaid, will not become homebound and will not be 
waiting for the current owner of a healthy set of lungs to die 
so that they can live.
    Joyce's plight is not that different from patients 
suffering from asthma, cystic fibrosis and lung cancer. For 
each of these diseases, science has identified gene defects but 
has not yet developed a cure. Nor is Joyce dissimilar from the 
30,000,000 Americans with chronic obstructive pulmonary 
disease, a disease for which we have a better understanding of 
the cause but do not yet have an effective therapy or cure.
    Mr. Chairman, to help bring hope to Joyce and cures to all 
Americans who suffer from chronic and acute lung disease, I 
urge you and the subcommittee to provide a 15 percent increase 
for the National Institutes of Health. And I thank you for the 
opportunity to testify this morning.
    Mr. Porter. Dr. Block, thank you for your very articulate 
testimony.
    [The prepared statement of Edward Block, M.D., follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. I want to tell you that the provision on 
Freedom of Information that was inserted in the Omnibus bill is 
a great example of why Omnibus bills should not be tolerated by 
the Congress, because the negotiations had at that point passed 
to the leadership and the representatives of the President, and 
the provision never would have survived the normal process of 
going through conference and having a normal bill.
    And that is one of the exact reasons why we want to get a 
budget resolution early, and we are going to get one today, we 
think, and get our allocations and get our bills out early and 
do them in the normal way separately so that we don't have this 
kind of insertion happen in the process, where nobody even 
knows that the provision is going in. And I am hopeful that we 
can follow the normal process. It is going to be difficult to 
achieve our goals, but I think in the end we will, as I said, 
this morning.
    That was all, by the way, in confidence. You weren't 
supposed to mention that.
    Dr. Block. It was a confidential environment, I understand.
    Mr. Porter. Thank you, Dr. Block.
    Dr. Block. You are welcome.
                              ----------                              

                                         Wednesday, April 14, 1999.

                           DIABETES RESEARCH


                               WITNESSES

FREDERICK J. SPERLING
SUSAN SPERLING
    Mr. Porter. Our next witness is Frederick J. Sperling, a 
private citizen, who I know very well since he is one of my 
constituents; and I met with him in a group in his home.
    Welcome, Fred.
    Mr. Sperling. Thank you. My daughter, Susan.
    Mr. Porter. He is going to tell us about Susan in a minute.
    Mr. Sperling. Thank you. Chairman Porter, Representative 
DeLauro, Representative Hoyer, and Representative Cunningham, 
sitting next to me is my 10-year-old daughter Susan who was 
diagnosed with insulin-dependent diabetes just over 3 years ago 
now.
    I still remember that terrifying day after she was 
diagnosed when she was in intensive care and we feared for her 
life. After she overcame that threat, we learned about the more 
insidious threat posed by diabetes.
    As you know, Mr. Chairman, diabetes, which afflicts more 
than 16,000,000 of our fellow Americans, is the leading cause 
of blindness, kidney failure and amputation and a major 
contributor to stroke and heart disease. On average, diabetes 
shortens life expectancy by over 15 years, and yet by any 
objective measure diabetes has not received its fair share of 
the NIH research budget.
    Mr. Chairman, you have been outspoken in recognizing that 
funding decisions should be based, among other factors, on the 
number of people affected and the costs to our society. Our 
Nation today spends more than $137,000,000,000 every year on 
diabetes and its complications, and the Federal government 
alone spends more than $40,000,000,000 on diabetes. That 
accounts for 1 out of every 4 of Medicare dollars. But only 
approximately 1 percent of that $40,000,000,000, less than 3 
percent of the NIH budget, is spent on diabetes research.
    To put this in perspective, diabetes kills twice as many 
people each year as breast cancer and AIDS combined. Yet 
diabetes receives less than 1/7th of the research dollars 
devoted to those two diseases.
    The last decade has been nothing short of a disaster for 
diabetes research. While the NIH budget increased by more than 
100 percent, funding for diabetes research increased by only 35 
percent. Now, Mr. Chairman, because this was less than the rate 
of inflation for biomedical research, funding for diabetes 
research is actually worse off now than it was a decade ago.
    If funding for diabetes research had only kept pace with 
the growth of the overall NIH budget, nearly $1,000,000,000 
more would have been devoted to diabetes research over the past 
decade; and although this is a time of extraordinary 
opportunity for diabetes research, the sad fact is that many 
researchers have left the field because of a lack of adequate 
funding.
    The recently released report of the congressionally 
established Diabetes Research Working Group characterizes the 
government's commitment to diabetes research as, in its words, 
trivial. Why is this so? I think there are many reasons, 
perhaps among them because diabetes reeks its havoc slowly over 
years and decades, rather than immediately. Perhaps also, Mr. 
Chairman, because the members of the diabetes community have 
been too quiet and well behaved. They haven't disrupted 
meetings with tactics like shouting and spilling blood, as 
advocates for research and other diseases have done.
    I hope we can all agree that those are not the methods that 
should dictate the biomedical research priorities for our 
country. It should be the objective standards that you have 
addressed over the years so eloquently.
    Even if you put aside the untold suffering and the 
shattered lives caused by diabetes, if you only consider the 
economic cost to our society, the dividend in saved lives and 
dollars the cure would yield makes diabetes perhaps the best 
research investment that NIH could possibly make.
    Many people look to insulin as if it were a cure. You know, 
Mr. Chairman, that it is, at best, a holding action. It is not 
a cure, and the numbers bear this out.
    On behalf of my daughter, Susan, and the more than 
16,000,000 other Americans who are at risk due to the serious 
complications that all too often occur, I ask that you 
implement the recommendations of the Diabetes Research Working 
Group. Their recommendation was that diabetes research be 
funded for the coming fiscal year at $827,000,000, rising to 
$1,017,000,000 by fiscal year 2004. And their report, compiled 
by the leading researchers in the field, not just in diabetes 
but in immunology and related disciplines, is the hard science 
upon which funding decisions should be made.
    Mr. Chairman, with adequate funding, the scourge of 
diabetes could be laid to rest within a decade. If our Nation 
can send people to the moon and bring them back safely, surely 
we can do this as well.
    To my continual amazement, through all the travails of the 
last 3 years, all the injections, all the rest, my daughter has 
never once asked why me or complained that it is not fair. But 
she does have a dream. Her dream is to be among the first 
generation of people who have had diabetes and have been cured. 
And this can truly happen, not just in some distant time but in 
the coming decade.
    I have a dream, too. My dream is that we find a cure for 
her and the millions of others in our Nation who fight the 
battle of diabetes every day, before it takes its relentless 
toll and cut shorts their lives; and we ask nothing more than 
that you and this committee follow your own objective standards 
and, based on the number of people affected and the costs to 
our society, that you devote the resources necessary to find a 
cure for diabetes that is tantalizingly within our reach.
    My daughter, Susan, has a few concluding remarks, Mr. 
Chairman.
    Ms. Sperling. Along with millions of other people, I ask 
you to give diabetes research full funding so diabetes, which 
is so close to a cure, can finally be cured.
    Mr. Sperling. Mr. Chairman, thank you very much for this 
opportunity to testify; and thank you for your commitment and 
the commitment of this committee.
    [The prepared statement of Richard Sperling follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. Well, Fred, and, Susan, you make the case very, 
very compellingly. Obviously, there is a long way to go.
    I will tell you, as I did before, that we will do the very 
best we can to move in the direction you want. Certainly, as I 
say, the presentation that you just made is a very compelling 
one; and I know that this subcommittee is committed to 
providing the maximum amount of funding.
    I personally, as you know, have an interest in this as 
well. My wife has diabetes, was diagnosed about 2 years ago. 
And I want to see Susan cured. I want to see my wife cured. I 
want to see everyone who has this terrible disease cured. And 
if money and resources and committed researchers can do it, we 
want to provide them the resources they need.
    So thank you for coming to testify. Thank you, Susan.
    Mr. Sperling. Thanks again, Mr. Chairman.
    Mr. Porter. It is good to see you both.
                              ----------                              

                                         Wednesday, April 14, 1999.

                 FRIEDREICH'S ATAXIA RESEARCH ALLIANCE


                                WITNESS

RONALD J. BARTEK, PRESIDENT
    Mr. Porter. Our next witness is Ronald J. Bartek, 
President, Friedreich's Ataxia Research Alliance.
    Mr. Bartek.
    Mr. Bartek. Thank you, Mr. Chairman. And I would like to 
thank you, the subcommittee and your staff for this Herculean 
effort of holding these hearings this week and permitting us 
all the opportunity to represent our patients, our patients' 
families, our research scientists in supporting your efforts.
    I do so first as a parent, a parent of a 13-year-old boy, 
Keith, who is afflicted with this devastating disease, 
Freidreich's ataxia; also as cofounder, along with my wife, and 
President of the Friedreich Ataxia Research Alliance, a 
nonprofit organization we established recently to help support 
the research into this disorder.
    Mr. Chairman, this is the same disease that afflicts the 
brave young woman who testified from her wheelchair yesterday, 
Erin from the Chicago area. She spoke primarily of the problems 
she has encountered in coping with this disorder in the school 
system. It is also the disease that afflicts other families 
here in the room, one of which is from Mrs. DeLauro's district; 
and Mrs. DeLauro was kind enough to meet with them yesterday.
    Like many of the diseases you were hearing about this week 
and have heard about many times before in your experience, this 
is a brutal, relentless and devastating disorder. It is a 
recessive, genetic disease. It is neurological. It is 
degenerative. The symptoms grow worse and worse as time goes 
on.
    The onset of those symptoms, unfortunately, is between the 
ages of 5 and 15 generally but quite often even earlier than 
that. The disorder has devastating impact throughout the 
system, throughout the body. It is from head to toe literally. 
It impairs vision, hearing, speech, as you could hear from 
Erin's voice yesterday. It brings on a very aggressive form of 
scoliosis, a curvature of the spine. It leads to diabetes, like 
that afflicts Susan and your wife. It also carries with it a 
very grave heart disorder which is one of the most troubling 
and devastating of its symptoms. It leads also to loss of 
muscle strength and coordination in the arms and the legs, 
which leads, like in Erin's case, to a wheelchair usually by 
the mid to late teens.
    Mr. Chairman, members of the committee, we have no 
treatment, certainly no cure for this devastating disorder. It 
therefore leads to death at an early age. Usually, our patients 
die by early adulthood.
    I will say that we are without a treatment but not without 
hope. We have tremendous hope in this community. We are one of 
the many beneficiaries, by the way, of the Decade of the Brain, 
of which you have been a champion. That decade has permitted us 
to find our gene. We did that only 3 years ago.
    I know that you are a past recipient of the Decade of the 
Brain Award; and, as such, you know full well what importance 
that gene identification carries. It has permitted us, for 
example, to determine and identify the protein that a healthy 
copy of that gene produces and an unhealthy copy doesn't. It 
has permitted us to determine that it is the mitochondria, the 
power plant of the cell, where this protein is to operate but 
not available in our patients.
    It has permitted us to determine that there is an 
overdeposit of iron in these cells, in the mitrochondria of 
these cells, and that exudate of stress or free oxygen radicals 
like in many other disorders and, in fact, in aging itself is a 
powerful factor.
    Our hope, of course, is that, having determined all of 
these factors in disease, we can approach, and we are beginning 
to approach, the point of clinical trials, and in an effort to 
identify how we might be able to show how this protein well 
functions, how we might be able to address that excessive iron 
deposit, how we might be able to chelate it or remove it, how 
we might be able to bind these free oxygen radicals, which 
obviously would be applicable across the spectrum of disease, 
or how some combination of these types of therapies might 
stall, might slow, might stop this disease, so that then we can 
follow with a very promising progress in terms of gene 
therapies or regenerative therapies that will permit us to 
restore function, to return the regenerate muscle and nerve 
fiber to restore these functions.
    Our message to you, Mr. Chairman, and the subcommittee 
today is very simple. We are very appreciative of your constant 
support. Our hope, as I have just expressed, is fully dependent 
upon that support. We are deeply grateful for your 
championship, for your leadership, and as effective as it has 
been in this effort to double the NIH budget in a 5-year 
period. We know, as you do, fully that that impact of that 
effort is already being deeply felt at the NIH and throughout 
the scientific community.
    We know, too, that funding levels because of that 
redoubling effort have gone up from 29 percent in 1998 to 35 
percent in 1999. Unfortunately, with the President's budget 
request below a 2 percent increase for this year, they would 
have to drop back to below 1998 levels, to 26 percent. No 
rocket science here. We would all suffer. Everyone before you 
this week would suffer the consequences.
    We would like to say that not only, therefore, from our 
perspective are you doing the right thing, Mr. Chairman. You 
are doing it the right way, as previous witnesses have 
testified. We think you are absolutely right in insisting that 
scientists make the scientific call, the scientificjudgment and 
that NIH refine its priorities and work with patient groups and work 
with the public to clarify those priorities.
    We would like to report, too, that we take that approach 
because we feel that a rising tide lifts all ships, that we 
will try to trim our sails to be ready to take that tide to 
sea. Our disease provides an excellent model of how that can 
work.
    We appreciate your insistence that the NIH work across 
institutional lines, work across disciplinary lines. Our 
symptoms cut across many of those institutes and many of those 
disciplines.
    The NIMDS, our principal institute, is funding an 
international scientific conference at the end of this month 
that will gather 60 of the world's leading scientific 
investigators into disease. Those participants and the funding 
is coming from places like the Office of Rare Disorders. Half 
of it comes from them. Some contributions and certainly some of 
the key participants come from the other institutes the 
Diabetes Institute, the Heart and Lung Institute, the Child and 
Health Development Institute, the Human Genome Research 
Institute.
    This is a wonderful and collaborative approach that the 
NINDS is fostering. We think your insistence has worked. They 
are operating aggressively in all of these fronts. They are 
working very embracingly with us, and we appreciate that.
    In conclusion, Mr. Chairman, we are extremely hopeful. We 
are excited. We know that that excitement and that hope depends 
on your continued support. We encourage you to preserve and 
prevail in this effort to double the NIH budget.
    We are small but increasingly active. We pledge our 
constant support in that effort. We will continue to work with 
our patient families, our scientific community, to assemble the 
science, to have our patient families contact their elected 
officials to seek their support for your efforts. We would be 
eager to hear about anything else we might be able to do in 
this regard.
    Mr. Porter. Thank you very much for your testimony Mr. 
Bartek.
    [The prepared statement of Ronald Bartek follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Ms. DeLauro. Mr. Chairman?
    Mr. Porter. Ms. DeLauro.
    Ms. DeLauro. May I make a comment?
    I want to thank you, Mr. Bartek, for your testimony and for 
just laying out what was, in fact, a goal of this committee. 
That is the utilization of the resources that the committee 
provides and the collaborative effort that then can exist at 
the NIH to bring to bear the kinds of research and the kind of 
treatments that they can discover, if you will, to address 
Friedreich's ataxia and I think other diseases.
    I think you highlighted this collaborative approach in a 
way that was very, very forceful. I was delighted to meet 
yesterday with Mary Body and with Sam and with Alex, who are 
here this morning.
    Ms. DeLauro. And you give us great hope, and you energize 
us when you talk the way you have and when you get a chance to 
meet with people like the Bodys and you understand their 
commitment and their hope with the process at the moment. So 
you have a receptive ear with this subcommittee. We will tell 
you that we will do our best so that we could help to try to 
make a difference.
    Mr. Bartek. Thank you very much, Mrs. DeLauro. We recognize 
as you do and as the full subcommittee does that we cannot come 
before you and ask that more funds be put against Friedreich's 
ataxia research. We realize it wouldn't make any sense.
    Not only does a rising tide lift tall ships, but we can't 
mandate or plan scientific breakthrough. We don't make such 
breakthrough where we plan to make it. We make it where we can. 
We hope there will be insights driven by Parkinson's and 
Huntington's that have impacts and insights for us and vice 
versa.
    Dr. Varmus testified here last year that Friedreich's 
ataxia is one of those mature bodies of research, insights in 
which can make powerful impact on the more common disorders. 
That is the approach we would like to foster.
    Mr. Porter. Thank you, Mrs. DeLauro. We appreciate that.
    Mr. Bartek, thank you very much for testifying.
    Mr. Bartek. Thank you, Mr. Chairman.
                              ----------                              

                                         Wednesday, April 14, 1999.

                    ILLINOIS COMMUNITY COLLEGE BOARD


                                WITNESS

JOSEPH J. CIPFL, PH.D., PRESIDENT AND CEO
    Mr. Porter. Our next witness is Mr. Joseph J. Cipfl, Ph.D., 
the President and CEO of the Illinois Community College Board.
    Joe, it is nice to see you.
    Mr. Cipfl. Hello, Mr. Chairman. Good morning, Chairman 
Porter and Members of the committee. I certainly want to thank 
you for giving me the opportunity to share with you at least a 
few moments this morning information to what I believe about 
one of the greatest assets of American education, and that is 
the community colleges of our nation. As president and CEO of 
the Illinois Community College Board, I am responsible for 
administering the 49 community colleges of Illinois. I would 
want to indicate to you this morning that Illinois is an 
excellent example of what is happening with the community 
colleges across this nation.
    Right now, Illinois community colleges are enrolling one 
million students on an annual basis. That is literally one out 
of 11 Illinoisians. 63 percent of the students that are 
attending Illinois public higher education today are enrolling 
in public community colleges. Another very interesting and 
vital statistic is that the average age of those students is 31 
years of age. Obviously, we are living in a technological 
revolution that is affecting the process of teaching and 
learning, and individuals are returning to our colleges in 
numbers that, a few years ago, we would never have been able to 
predict.
    When we take a look at our Nation, community colleges are 
enrolling approximately 5.4 million credit students and are 
serving approximately 5 million non-credit students. 44 percent 
of all United States undergraduates are enrolled in community 
colleges. We are, now at this point in time as we approach the 
new millennium, the largest sector of United States public 
higher education as well as Illinois public higher education.
    I want to share with you this morning that the community 
colleges not only provide the largest sector of higher ed, but 
they are the key providers necessary to maintain a skilled work 
force in our nation. According to a recent study by the 
American Society for Training and Development, by the first of 
next year, 89 percent of the jobs in the United States will 
require post-secondary levels of literacy and math skills; but 
only half the new workers coming into the work force are likely 
to have these skills. The skills-gap created by this situation 
will lead to increasing disparity in wages unless corrective 
action is literally taken now.
    Community colleges provide a credit generating work force, 
training courses, and work in hundreds of occupations.
    They also offer flexible, customized noncredit training for 
businesses, industry, and for our government. In fiscal year 
1998, business and industry centers in our Illinois community 
colleges provided customized training to 3,100 businesses. This 
is in one year. And 122,921 employees and the centers helped 
create or retain over 165,000 Illinois jobs.
    Educating and training the future work force occurs in an 
increasingly complex and constantly changing environment that 
colleges must daily adapt to. New technologies demand extensive 
training and retraining of teachers to operate and thrive in 
the classrooms of tomorrow. Community colleges are perfectly 
situated to efficiently and effectively recruit and train new 
teachers and retrain existing ones. Of students graduating from 
teacher education programs at public universities both in 
fiscal years 1997 and 1998, two-thirds each year have taken 
courses in the community colleges and 40 percent had attended a 
community college before the baccalaureate degree granting 
institution.
    I also want to indicate this morning that technology is 
allowing us to overcome the boundaries of space and time which 
limit access to education and training. Technology offers 
enhanced learning opportunities for all when it is available 
and when it is usable. In Illinois, we are implementing a 
statewide telecommunications-based, fully interactive distance 
learning system. Equipment purchases and remodeling activities 
will result in making nearly 375 individual interactive sites 
operational by the end of the current fiscal year.
    During the past year in Illinois, 800 courses with 
enrollments of seating 16,000 students were offered via 
telecommunications. Unfortunately, purchasing and operating 
costs for these systems remain high. To maximize the benefits 
achievable through distance learning and networks, higher 
education institutions also need access to the Universal 
Service Fund program. We also urge legislation to ensure that 
students who take courses through distance learning have access 
to student financial aid.
    Access to financial assistance is crucial even at community 
colleges which offer a more affordable avenue to higher 
education. In Illinois, nearly two-thirds of all minority 
students and public higher education students attend a 
community college. Illinois community colleges also annually 
serve 11,000 students with disabilities and 38,000 students 
with limited proficiency in English. Our community colleges are 
especially productive in helping those students with multiple 
barriers overcome them. Nationwide, our tuition fees are less 
than $1500 per academic year.
    Pell Grants and Hope Scholarship tax credits make the 
difference for thousands of low-income community college 
students. In Illinois, over 55,000 community college students 
received Pell Grants last year. Nationally, in 1995 and '96 
over 1.25 million community college students benefited from 
Pell Grant awards. This morning, I encourage the subcommittee 
to provide a $400 increase to the Pell Grant to the maximum 
Pell Grant.
    I also, this morning, want to urge you to fund the 
Strengthening Institutions Program. And, Congressman Porter, I 
know how supportive you have been of this undertaking. It is 
Title III of the Higher Education Act. It would return it to 
its former level of $80 million. This program works efficiently 
to assist needy institutions to serve large numbers of 
disadvantaged students. And also, I encourage the funding of 
the Carl B. Perkins Vocational and Technical Education Act, and 
this year I urge you to help even more students by adding the 
$125 million to the programs. Let institutions take advantage 
of the opportunities under the reauthorization.
    And finally and I will conclude, I encourage you to fund 
the new Child Care Access Program created by the 1998 Higher 
Education Act of 45 million. I would just simply state that 
community colleges are phenomenal educational happenings. Right 
now, I just had conversations with leadership in China wanting 
me to come there in October to talk about what community 
colleges are doing for Illinois and doing for our Nation. I 
would indicate the community colleges are not simply a place 
but rather our community colleges are a process, process by 
which we enable, we empower, we elevate, we energize and we 
equip. Thank you.
    Mr. Porter. Joe, that is a great message and the statistics 
that you cite are just phenomenal. I had some idea but nothing 
as large an impact as community colleges are having on our 
educational system. It is just incredible, particularly in 
Illinois, I guess.
    Mr. Cipfl. The individuals coming to our college, the 
average age is 31. I was walking down one of my colleges, and I 
heard a voice behind me say, Hey, sonny. Been a few years since 
I have been called sonny. She said to me, Do you think I am too 
old to enroll in a computer class? I said, Well, dear, how old 
are you. She said, I am 92 years of age. I got her enrolled. I 
want you to know she is doing pretty well too.
    Mr. Porter. That is great. Nice to see you. Thank you so 
much.
    [The prepared statement of Joseph Cipfl follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

                                         Wednesday, April 14, 1999.

             ILLINOIS AREA HEALTH EDUCATION CENTERS PROGRAM


                                WITNESS

RICHARD A. WANSLEY, PH.D., EXECUTIVE DIRECTOR
    Mr. Porter. The next witness is Dr. Richard A. Wansley, 
Ph.D., Executive Director, the Illinois Area Health Education 
Centers Program. Dr. Wansley.
    Mr. Wansley. Thank you. Good day. I am testifying on behalf 
of my colleagues associated with Area Health Education Centers, 
AHEC programs, and Health, Education and Training Centers, 
HETCs. Currently there are 37 AHEC programs located in 41 
states with over 160 community-based centers. The mission of an 
AHEC is to improve the distribution of health care 
professionals through community academic partnerships in order 
to increase access to quality care with a particular focus on 
primary health care for underserved communities. HETCs have a 
similar mission but are uniquely centered on public health 
matters associated with extremely underserved areas within our 
country, especially areas found along our Nation's border with 
Mexico.
    AHECs play an important role in national and local 
strategies to ensure accessible quality health care for people 
in our country. The service education linkages support a 
variety of interventions. These strategies include community-
based training for health profession students and medical 
residents with a special emphasis on clinical education sites 
and shortage areas and medically underserved areas.
    In Chicago, our AHEC manages a community medicine clerkship 
for over 200 medical students each year and provided over 4,000 
weeks of clinical education of community sites for around 750 
other health profession students and medical residents last 
year. One of those clinical education sites is Haymarket Center 
that was represented by testimony earlier this morning. The 
Florida AHEC, a larger and older model program, coordinates 
over 900,000 hours of health profession student training each 
year.
    AHECs also developed health careers for recruitment 
programs and underserved rural and urban areas focusing on 
minority and other populations underrepresented in the health 
professions. Our program administers the national award-winning 
Chicago Health Corps/AmeriCorps project where corps members 
commit to a full year of service in community health. Since the 
beginning of the project, about 80 percent of former members 
have pursued a health professions education.
    A South Texas AHEC program has conducted health career 
awareness and preparatory programs for over 30,000 elementary, 
middle, and high school youth, and college undergraduates. Our 
programs facilitate continuing professional education and 
develop the skills of clinical preceptors who practice in 
remote areas in our states.
    The Pennsylvania AHEC carried out continuing education for 
over 4,900 primary health care professionals last year. Our 
Illinois program partnered with NIH, CDC, FDA and the Chronic 
Fatigue and Immune Dysfunction Syndrome Association of America 
to expand the satellite broadcast audience of primary care 
providers who learned about management of chronic fatigue. 
There are over a thousand participants associated with 75 AHEC 
downlink sites located across the nation for this program.
    AHECs promote improvements in health care and other 
strategies to prevent disease through special projects and 
community workforce planning and policy analysis. In Illinois, 
we sponsor a health profession student project that aims to 
increase the percentage of Asian American children who are 
immunized against hepatitis B infection.
    As to health policy and workforce planning, AHEC staff 
members around the nation serve on local and statewide policy 
related committees and task forces that are designed to improve 
health in their communities. For example, I chair the Illinois 
Primary Care Medical Education Advisory Committee, an 
organization established by the Illinois general assembly, that 
reports on policy-related recommendations to the general 
assembly and the governor.
    The fiscal characteristics of AHEC projects are such that 
there is a substantial contribution of non-Federal matching 
funds. Indeed, one of the great successes of this Federal 
initiative has been its ability to financially sustain itself 
without depending entirely on Federal funds. Federal funds help 
leverage financial support from sources that include the public 
sector such as state, county, and city government as well as 
private funders such as local and national foundations.
    Our current estimate is that for every one dollar invested 
by the Federal Government, the national AHEC programs raise 
another eight dollars in support. We believe that it is 
essential that the national AHEC program and HETCs be able to 
continue their support for education programs that help improve 
health care for people who have the greatest need for services. 
Given the outstanding progress of our programs over past years, 
we urge you, Mr. Chairman, to increase the current annual 
appropriation of $29.5 million for AHECs and $3.8 million for 
HETCs by at least four percent.
    In the Health Professions Act of 1998, Congress indicated 
that every state should have an AHEC program. My colleagues and 
I estimate that meeting this goal and sustaining the commitment 
to maintain model AHECs and HETCs would require appropriation 
of $50 million. However, a four percent increase would permit 
continuation of the current basic AHECs and HETCs as well as 
limited growth of new projects in new states or areas of 
states. Mr. Porter, I thank you for your consistent support 
over the years, and I would be happy to respond to any 
questions or comments. Thank you.
    Mr. Porter.  Thank you, Dr. Wansley.
    [The prepared statement of Richard Wansley follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter.  What does the President's budget have?
    Mr. Wansley. The current budget?
    Mr. Porter. Yes, the current and the proposed.
    Mr. Wansley. I am not sure what the proposed budget is.
    Mr. Porter. I can find it. I thought you might know that.
    Mr. Wansley. No, I don't know.
    Mr. Porter. Is there an importance to physical location of 
the centers?
    Mr. Wansley. Is there an importance to the physical 
locations?
    Mr. Porter. Yes.
    Mr. Wansley. The locations of the centers themselves are 
predominantly administrative offices for the education 
programs.
    Mr. Porter. There really isn't any significance to where 
they might be located?
    Mr. Wansley. Not particularly. They do need, however, to 
have a consistent involvement with the community that they are 
impacting in their areas through the purposes of an advisory 
committee as well.
    Mr. Porter. You have educated us all a great deal on AHECs 
and we appreciate your coming to testify and we will obviously 
do our best to respond. Thank you.
                              ----------                              

                                         Wednesday, April 14, 1999.

                 INFECTIOUS DISEASES SOCIETY OF AMERICA


                                WITNESS

DR. JOHN G. BARTLETT, M.D., PRESIDENT
    Mr. Porter. Dr. John G. Bartlett, M.D., president, 
Infectious Diseases Society of America.
    Dr. Bartlett. Congressman Porter, Members of the 
subcommittee, the Infectious Disease Society represents about 
5,000 doctors and scientists devoted to patient care, 
education, research, and community health in the field of 
infectious diseases. We appreciate the opportunity to appear 
before your committee.
    I would like to talk about infectious diseases. It is a 
field that is quite deceptive and, in many ways, unique 
compared to other disciplines in medicine. For example, despite 
impressions to the contrary, infectious diseases are actually 
increasing as a cause of death in the United States. Secondly, 
infectious diseases are the most unpredictable discipline in 
medicine, and third, infections may occur in explosive fashion 
over large areas involving millions of people.
    Let me expand on these points. First, the progress in 
infectious diseases over the years has been substantial. The 
diseases at the turn of the century are no longer problems. And 
this is due to the results of having vaccines and antibiotics 
and gumshoe public health efforts. Nevertheless, despite those 
remarkable accomplishments earlier, there has been an increase 
in deaths ascribed to infectious disease from 1980 to the 
present. The increase in mortality is about 60 percent due to 
infectious disease. And at present, the infectious disease 
represents the largest cause of death in the world, and the 
third leading cause of death in the United States. And these 
numbers seem to be getting worse rather than better.
    The second point I made is infectious diseases are turning 
out to be major causes of conditions that are traditionally not 
thought to be infection. For example, studies in the past year 
have shown that Helicobacteria bacteria, a bacterium, is a 
major cause or the only cause of stomach ulcers. It is now 
believed that hepatitis C rivals alcoholism as the major cause 
of cirrhosis in the United States and that hepatitis B is the 
major cause of cancer in the world.
    There are now at least six viruses known to cause cancer. 
New information about a bacterium called chlamydia pneumonuiae 
suggested it may cause cardiovascular disease and further 
suggests the very provocative possibility that antibiotics 
would prevent heart attacks.
    Many of us feel that medicine is evolving in a fashion 
which nearly all disease is either infectious disease, 
genetics, or bad luck. So if you get hit by a bus, that is bad 
luck, but everything else would possibly be either genetic or 
infectious.
    The third point is that infectious diseases can cause 
explosive morbidity and mortality, and these events are largely 
predictable. We know, for example, that the major pandemic of 
influenza is likely to return. It will be a new strain, one in 
which the population has no immunity and it could be like 
Spanish flu of 1918, Asian flu of 1957, or Hong Kong flu of 
1968. Remember, in 1918 the average age of death was 34, and 
the average length of life decreased 11 years as a result of 
that epidemic.
    It must be remembered that epidemics of infectious diseases 
at any place in the world are likely to have a direct impact on 
the United States due to international travel, and as we speak 
right now, there is a new strain of influenza just discovered 
which is called H9N2 in two children in Hong Kong and a 
mysterious viral infection that has killed over a hundred in 
Malaysia.
    So how is our country prepared to deal with these problems? 
Well, CDC and National Institute on Allergy and Infectious 
Disease have been, and will continue to be, our major resources 
for dealing with infectious diseases. These two agencies have a 
somewhat different mission. The CDC represents the world's most 
renowned organization for epidemiologic investigation, disease 
control, and policy formulation. This is generally viewed as 
the agency with the greatest experience, resources, facilities, 
and technical know-how of any public health institution in the 
world. They respond to a diverse array of public health threats 
that may occur any time at any place.
    The NIH and specifically NIAID, the Institute of Allergy 
and Infectious Diseases, serves a different function. It is an 
agency that is largely responsible for orchestrating our 
efforts in scientific discovery and the training of future 
scientists in the field.
    In preparing for this testimony, I counted 21 new microbes 
that have been discovered in the past 25 years and found that 
at least 17 were by NIAID or CDC funded investigators. I am not 
talking about weird things. I am talking about common and 
important diseases such as Borrelia burgdorferi, the cause of 
Lyme disease; or chlamydia pneumoniae, a very important cause 
of pneumonia and possibly cardiovascular; hepatitis C 
bartonella, cause of cat scratch disease; legionella, cause of 
Legionnaires disease; a virus that causes Kaposi sarcoma, the 
most common tumor in patients with AIDS; and the most common 
form of diarrhea that we recognize at the present time.
    Then once these new bugs are discovered, there is usually a 
rather predictable cascade of events. I described the clinical 
problem and then you get a diagnostic test and then you have 
the evolution of methods to deal effectively with the problem 
here with antibiotics or vaccines.
    So let me finish by mentioning the really hot spots 
ininfectious disease at the present time. Bioterrorism is one. We 
support the proposed expansion of responsibilities for the CDC and NIH, 
but we want to emphasize the need for funding that will build public-
private partnership. So in the event of an Anthrax attack, for example, 
the first responders are going to be physicians in practice and local 
laboratories, and we will use private hospitals. This type of attack is 
likely to require medical care for hundreds or thousands and 
prophylactic antibiotics for tens of thousands or possibly hundreds or 
even millions. The major resource for dealing with medical care of this 
magnitude is, by necessity, primarily from the private sector. So what 
we would emphasize is that meaningful preparations for bioterrorism 
must include incentives to involve the private sector including the use 
of professional societies such as mine, the IDSA.
    Another hot spot is antimicrobial resistance. Many of the 
bacteria that were easily treated 20 or 30 years ago are now 
becoming therapeutic challenges due to resistance, a scenario 
that has gotten a lot of press. It is probably the price of 
progress, but it also represents a problem in what many of us 
perceive as abuse of antibiotics in both patients and industry.
    Mr. Porter. Dr. Bartlett, I have to ask you to conclude 
your statement, please.
    Dr. Bartlett. Okay. The only other category in which I 
would like to emphasize as a hot spot would be in the area of 
vaccine which has been the source of remarkable progress in the 
past, and in aids for HIV infection which is now obviously a 
very important content area. So what I want to say in 
conclusion is that we have tried to summarize the issues on 
infectious disease and would like to emphasize the need in 
future planning to take advantage of our lessons from history. 
We know that infectious diseases are absolutely unpredictable. 
They are potentially devastating and very important. Thank you. 
I would be glad to answer questions.
    Mr. Porter. Thank you, Dr. Bartlett.
    [The prepared statement of Dr. John Bartlett, M.D., 
follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. Let me ask one question. I think you said the 
mortality increase from 1980 is 60 percent?
    Dr. Bartlett. Mortality increase ascribed to infectious 
diseases has increased by 60 percent.
    Mr. Porter. That is worldwide?
    Dr. Bartlett. No, that is in the United States.
    Mr. Porter. What would be the principal causes of mortality 
in the United States? Let's say three diseases?
    Dr. Bartlett. The major three would be AIDS, pneumonia, and 
something we call sepsis which is a bacteria in the 
bloodstream. All three are major causes of increase in 
mortality.
    Mr. Porter. Well, this is a very, very important subject 
obviously. We very much appreciate your coming to testify and 
to educate us, Dr. Bartlett. We certainly will do the best to 
provide funding in the areas that you have mentioned. Thank you 
so much.
    Dr. Bartlett. Thank you.
    Mr. Porter. The subcommittee will now stand in recess for a 
vote.
    [Recess.]
                              ----------                              

                                         Wednesday, April 14, 1999.

         INTERSTATE CONFERENCE OF EMPLOYMENT SECURITY AGENCIES


                                WITNESS

JOSEPH WEISENBURGER, PRESIDENT
    Mr. Porter. The subcommittee will come to order. We 
continue our public witnesses with Joseph Weisenburger, 
President of Interstate Conference of Employment Security 
Agencies. Mr. Weisenburger.
    Mr. Weisenburger. Good morning, Mr. Chairman, committee 
Members. My name is Joe Weisenburger. I am the Deputy 
Commissioner of the New Hampshire Department of Employment 
Security and president of the Interstate Conference of 
Employment Security Agencies, a national association of the 50 
State employment security agencies that run this nation's 
unemployment insurance programs and public employment service. 
Thank you for the opportunity today to provide our view.
    This is a very dynamic economy that we are in right now. 
Most people would think that employment is very stable, but in 
fact employment is not particularly stable. This year 16.7 
million American workers, one out of every seven American 
workers, filed a claim form for employment benefits. The number 
of employers that support the unemployment insurance system and 
the public employment services has grown to six and a half 
million employers, those who pay taxes to support the system. 
The workload for the system has been consistently high.
    This year's appropriation, the one we are operating under 
right now, as determined by the U.S. Department of Labor is 
$360 million short of what is necessary to run our programs 
under today's workload. The President's budget for the next 
year freezes the unemployment insurance program at the same 
level. That means that States will now have to absorb cost-of-
living increases for salaries and benefit increases, high cost 
of technology and the overhead costs within that limited budget 
without any assistance from our Federal partner. This is going 
to only exacerbate the problems that we have in administering 
our programs. We are concerned that the foundation for the 
unemployment insurance program is eroding and that we will not 
be prepared when this country falls into a recession.
    At the same time in the President's budget, he requests $40 
million, a one-time appropriation to improve the wage records 
of the unemployment insurance program. There is nothing wrong 
with the wage records in the unemployment insurance program. 
This is a process to improve the wage records for use by the 
Social Security Administration and by the Department of Health 
and Human Services and its child support enforcement division. 
We think it is inappropriate to use fewer dollars, those paid 
by employers dedicated to the employment security system, to go 
to supporting another program at the same time that our 
programs are hurting for resources. So we request that you 
would divert that $40 million to the base funding for the State 
programs to providea very modest cost-of-living increase for 
the States.
    In the President's budget, he also included $71 million for 
integrity programs. Those are activities that the states have 
let slide because we have been underfunded, and it is very 
important that those programs be maintained, so we support the 
President's initiative to reestablish the integrity programs in 
the unemployment insurance program. And we urge you to support 
the President's request there.
    Regarding the public employment service, it too is very 
busy. This year 18 million workers, one out of every seven 
American workers, registered for work with the public 
employment service. Three million found jobs as a result of 
that service. This means that 15 million American workers left 
our system without a positive outcome. Our budget has been 
frozen for the last five years. The States have again had to 
absorb the cost of living and cut back on services.
    The public employment service is a revenue generator for 
the Federal Government. Every time we place somebody into a 
job, that individual is paying Federal and State taxes. In many 
cases, it cuts back on benefit outlays such as unemployment 
benefits, food stamp payments, or welfare recipiency so we know 
the public employment service is a good investment. 
Additionally, in the Workforce Investment Act that the Congress 
passed last year, the Department of Labor and we agree that the 
employment service is the glue that will hold this one-stop 
workforce development system together, a Congress-envisioned 
collaboration partnership leveraging resources down to the 
local levels. Without a strong public employment service, that 
partnership is going to be very difficult to maintain. We urge 
an increase to the allocation for the public employment service 
from $761 million to $811 million so that the employment 
service can play its role in these one-stop systems.
    In the President's budget, he also includes $53 million 
targeted to reemployment services for UI claimants. This is a 
very important proposal, and we support it very strongly. It 
means that we will be able to focus on UI claimants, getting 
them back to work more quickly, saving employer tax dollars, 
and saving trust fund revenues. So we strongly urge you to 
support the President's request for $53 million for the public 
employment service.
    Finally, I would like to talk just a moment about the 
government performance and review. I hear the buzzer, I will 
stop now and respect your request to keep within five minutes.
    Mr. Porter. Mr. Weisenburger, thank you for your testimony. 
Very impressive. You didn't use a single note. Went right 
through it. I am going to withhold questions because we are so 
far behind our scheduled time, but let me thank all the 
witnesses who have appeared and thank you for your testimony 
today.
    Mr. Weisenburger. Thank you.
    [The prepared statement of Joseph Weisenburger follows:]

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                                         Wednesday, April 14, 1999.

                          NEW YORK UNIVERSITY


                                WITNESS

PETER LENNIE, PH.D., DEAN FOR SCIENCE, PROFESSOR OF NEURAL SCIENCE
    Mr. Porter. Next is Dr. Peter Lennie, Ph.D., Dean for 
science, Professor of neural science at New York University. 
Dr. Lennie.
    Mr. Lennie. Thank you, Mr. Chairman. I am speaking on 
behalf of New York University as its dean for science. I 
appreciate this opportunity to discuss a project that will 
enhance national welfare by advancing the scientific 
understanding of the brain, its development, and activity.
    I would like to thank the committee for its willingness to 
support basic research. In particular, we applaud the 
committee's previously stated support of, and I quote, 
``research in the area of brain development, mechanisms that 
underlie learning and memory, the acquisition and storage of 
information in the nervous system, and the neuroprocesses 
underlying emotional memories as they relate to the 
intellectual development and cognitive growth.'' This is an 
area of exceptional significance, indeed, one in which NYU has 
great strength; and I thank the subcommittee for supporting the 
research being conducted in this field.
    I would like to say a little bit about investments in 
research that will greatly increase our understanding of how 
the brain matures and functions. At NYU, we are promoting such 
research by establishing a center for cognition, learning, 
emotion, and memory studies. To establish this center, NYU 
seeks support to expand its working cognitive science, visual 
science, computational neural science, and related programs. We 
seek to attract investigators from the range of contributing 
disciplines and to provide the technical resources needed to 
create a world-class scientific enterprise.
    Research in our center will substantially increase what we 
know about the neural mechanisms that underlie aspects of human 
behavior that are important for education, health services, and 
labor training and deployment. Researchers at the center will 
examine newer mechanisms of learning and memory. They will 
probe fear and its impact on learning and performance and they 
will study perception and information processing in the brain. 
There are enormous potential applications for early childhood 
intervention, teacher training, educational technologies, job 
training and retraining, and diagnosis and treatment of mental 
and memory disorders.
    I would like to offer you some examples. The center's 
research will help us better understand how children learn at 
different stages with different cognitive styles and how 
parents and teachers can accommodate these styles to stimulate 
interest and increase retention. The research need is clear. 
Many educational reforms are being introduced without an 
advantage of the understanding of the fundamental processes 
that lead to learning.
    Second, our research in the cognitive processes that affect 
attention and memory are important implications for adult 
learning as well. One productive focus is in learning 
technologies that can help us to design job training programs 
and can rationalize the way we train new workers or retrain 
workers in emerging occupations and technologies.
    Third, our research in biomedical and behavioral research 
can lead to advances in health and well-being. As an example, 
the center will explore how memory is altered by aging and how 
biologic malfunctions in the emotional system can cause 
disorders like phobias, panic attacks, and post-traumatic 
stress.
    Our research in the newer biology of fear will help us 
understand the source of fear and other emotions, why they are 
hard to control, and ultimately whether the unconscious neural 
circuitry of emotions can be altered or inhibited.
    Many of the studies to be undertaken in our center have a 
common focus in the changes in the nervous system that occur 
when we remember new things or learn new skills. Understanding 
these changes is essential to understanding and improving the 
flexibility of human behavior. If we understand this 
flexibility and harness it, we can work better and learn better 
even as we age. These are issues that resonate broadly with the 
American public and capture its attention and support. For 
example, the cover story of the New York Times magazine of 
February 28 of this year was entitled ``The Anatomy of Fear'' 
and featured investigators at NYU who were characterizing 
anxiety in the brain and learning how these problems can be 
treated.
    NYU is particularly well positioned to create and operate 
this major cross-disciplinary research and training center. As 
the largest private university in the Nation, NYU has 
outstanding researchers and major strengths in the disciplines 
that need to be brought together to tackle these complex 
problems. We have a powerful presence in neural biology, 
cognitive science, behavioral science, educational psychology, 
mathematical modeling, and computer simulation. We are in a 
special position to harness these strengths to attack major 
issues in cognition, learning, emotion and memory and to 
successfully meet our national goals and this committee's 
priorities.
    Mr. Chairman, this concludes my testimony. I thank you for 
the opportunity to appear before you today.
    Mr. Porter. Thank you very much for your testimony. We 
appreciate it.
    [The prepared statement of Peter Lennie follows:]

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                                         Wednesday, April 14, 1999.

         NORTH AMERICAN SOCIETY OF PACING AND ELECTROPHYSIOLOGY


                                WITNESS

DAVID HAYES, MD, PRESIDENT
    Mr. Porter. Our next witness is Dr. David Hayes, M.D., 
President of the North American Society of Pacing and 
Electrophysiology. I had to put my glasses on to read that.
    Dr. Hayes. Chairman Porter, my name is David Hayes. I am a 
cardiologist and vice chairman of cardiology at the Mayo Clinic 
in Rochester, Minnesota and president of the North American 
Society of Pacing and Electrophysiology, or NASPE. NASPE is an 
organization of physicians, scientists, and allied health 
professionals that are dedicated to the study and management of 
cardiac rhythm disturbances and to improving the care of 
patients by promoting research, education, and training. NASPE 
appreciates the opportunity to appear before this committee.
    First, we would like to thank the chairman and Members of 
the subcommittee for its dedication and support for the NIH and 
specifically for the National, Heart, Lung and Blood Institute. 
Research including clinical trials funded by the NHLBI 
translate into better care for our patients. As a very timely 
example, the clinical community was recently provided with 
results from the Multicenter Unsustained Tachycardia Trial or 
the MUSTT trial which was an NIH funded study. This important 
study concluded that implantable defibrillators resulted in a 
reduced death rate for patients with cardiac arrest over drugs 
alone.
    In recent decades, we witnessed remarkable advances in 
technology that have allowed new and successful therapeutic 
approaches for patients with cardiac rhythm disturbances. These 
life-saving treatments and devices have been based on years of 
NIH funded research as well as industry-sponsored research. 
Patients with diagnosed cardiac rhythm disorders often undergo 
device implantation. For example, a pace maker is used 
predominantly for the treatment of slow heart rhythms and a 
defibrillator is used for rapid, potentially life threatening, 
rhythm disturbances. The defibrillator then shocks the heart 
back into a regular rhythm.
    Other treatment strategies have emerged such as ablation 
therapy, where specific areas of the electrical system of the 
heart are targeted with a catheter and the abnormal portion of 
the heart is altered so that the patient is no longer bothered 
by abnormal rhythm. However, our field is still relatively new 
and based on research that continues to evolve. As we approach 
the new millennium, the potential to improve both the quality 
and length of life of our citizens is enormous.
    However, the aging population will pose unique challenges. 
For example, currently it is estimated that at least 4 percent 
of Americans over the age of 65 develop atrial fibrillation. 
When this room is full, at least two people in this room, 
statistically speaking, would develop that rhythm disturbance. 
And as the population ages, the incidence will only go up. 
Atrial fibrillation is a heart rhythm disorder where the normal 
control mechanism of the heart is lost and the upper chambers 
of the heart literally quiver. When they do that, the blood 
isn't moved through the heart on a regular basis. The patient 
suffers from a rapid irregular heart beat and also is at risk 
for a stroke because of potential clotting within the upper 
chambers of the heart.
    As you noted in last year's House report language, this 
occurs in 2 million Americans, causing 90,000 strokes per year. 
It became common knowledge to many people when former President 
Bush was diagnosed with peroxisomal atrial fibrillation. And 
according to what was released to the press, President Bush 
appeared to have a form of this that was relatively easy to 
manage. However, hundreds of thousands of Americans require 
recurrent hospitalizations for this problem from the drugs used 
to treat atrial fibrillation or from a stroke secondary to 
atrial fibrillation. NIH-sponsored research will lead to new 
treatments for this disabling, and often deadly, heart rhythm 
disorder.
    Similarly, sudden cardiac death is a major problem and 
refers quite simply to a sudden lethal heart rhythm 
disturbance. Responsible for over 300,000 deaths a year, and 
possibly as many as 500,000 deaths per year, this problem is 
obviously a major priority force. And, again, statistically 
speaking, with this room filled, one person statistically would 
be at risk for sudden cardiac death.
    It is not just the older population. We hear this most in 
high-profile cases of athletes. Even though we have some 
limited treatment methods for such attacks, what we really need 
is a way to prevent the deadly lethal rhythm disturbances in 
the first place. Many of these answers might be found in 
molecular or genetic research, but we are truly in the infancy 
of the research. One of the goals of NHLBI research is to be 
able to identify and target the patient at risk for sudden 
cardiac death and discover treatments to prevent its 
occurrence. At this point, most victims of sudden cardiac death 
do not have any signs or symptoms identifying them as being at 
high risk before the event occurs.
    It is difficult, if not impossible, to place a dollar value 
on research and disease prevention when one thinks of it in 
terms of quality of life and pain and suffering. But research 
will help us to determine how best to manage the individual 
patient in an effort to avoid the disease in the first place 
and the subsequent outlay of dollars required for management of 
the rhythm disturbance once it manifests. The necessary 
research requires more funding than what has been available. 
NASPE is most appreciative of Congress's historic support of 
the NIH and NHLBI and urges Congress to continue its commitment 
to doubling the NIH budget over the next four to five years and 
hopefully an incremental increase over this. Thank you very 
much.
    Mr. Porter. Dr. Hayes, thank you very much. I have 
questions, but I am going to restrain myself because we are on 
such a tight schedule. Thank you for coming to appear.
    [The prepared statement of Dr. David Hayes, MD., follows:]

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                                         Wednesday, April 14, 1999.

               ORGANIZATIONS OF ACADEMIC FAMILY MEDICINE


                                WITNESS

JOHN DICKINSON, M.D., CHAIRMAN OF THE DEPARTMENT OF FAMILY MEDICINE, 
    UNIVERSITY OF ROCHESTER SCHOOL OF MEDICINE AND DENTISTRY
    Mr. Porter. Dr. John Dickinson, M.D., Chairman of the 
Department of Family Medicine, University of Rochester School 
of Medicine and Dentistry, testifying on behalf of 
Organizations of Academic Family Medicine. Is that correct?
    Dr. Dickinson. Yes, sir. Thank you, Mr. Chairman. I am Dr. 
John Dickinson, family physician, chairman of the Department of 
Family Medicine, as you mentioned, and president of the 
Association of Departments of Family Medicine. I am grateful 
for this information to discuss two programs of great 
importance to the Organization of Academic Family Medicine. 
First, I would highlight the need for increased fiscal Year 
2000 appropriations for health professions training. 
Specifically, we support 133 million for the primary care 
medicine and dentistry cluster under title 7 of the Public 
Health Service Act, of which 87 million is needed for family 
medicine. Second, we recommend 225 million for the Agency for 
Health Care Policy and Research, of which at least 25 million 
should be directed to the Center for Primary Care research.
    We understand the difficult decisions you face this year 
given budget restrictions. We hope that as the year progresses 
the situation may change, that you will be able to support 
these programs fully as you have in the past.
    Let me illustrate how family medicine programs have met 
Congressionally-mandated goals. In fiscal year '99, 29 
residency training programs were funded under title 7 at family 
medicine. All 29 met the statutory preference for underserved 
populations. Outcome data show that 42 percent of graduates of 
title 7 funded family medicine programs enter practice in 
medically underserved and rural areas.
    Only a few years ago, 20 American medical schools had no 
departments of family medicine at all. With the help of Title 7 
funds, 12 have recently established such departments. Clerkship 
experiences in family medicine are key determinants of medical 
students' decisions to enter primary care. Title 7 projects and 
predoctoral education effectively help many departments, 
including my own, to establish such clerkships.
    In Rochester, we place 70 percent of our students among 
rural and underserved populations. One such clerkship in 
Northeastern Pennsylvania convinced me to enter family 
medicine. Faculty development projects have improved both the 
quality and the reception of new teachers in our training 
programs. Seventy-six percent of faculty trainees in one study 
remained in faculty positions and half of these in medically 
underserved communities.
    Why are additional resources needed? We know that effective 
health care delivery for all Americans requires a strong 
primary care foundation, particularly in family medicine; yet 
many of our departments are in their infancy, others in 
adolescence. Most remain vulnerable politically and financially 
and require continued support to reach full maturity in an 
extremely competitive environment.
    Several critical next steps relate directly to the Title 7 
programs. First is the development of a functional research 
infrastructure which is needed to address a host of troublesome 
questions about the efficiency and effectiveness of primary 
health care delivery. Second is to expand our exposure to 
medical students who complain that their family medicine 
experiences are too brief at four to six weeks, compared to the 
eight to 12 weeks in other specialities. Third, we must expand 
further our capacity to prepare future family physicians for 
practice in rural and underserved areas. In the current cycle, 
we were unable to fund 44 qualified training projects that met 
the underserved preference. Fourth is to train new faculty 
teachers and investigators to fill hundreds of vacant faculty 
positions nationwide, particularly for programs, again, in 
underserved and rural communities.
    Turning a moment to research, as a Nation, we invest wisely 
in the basic medical sciences, with the fiscal year '99 NIH 
budget over $15 billion. But these bold programs offer few 
opportunities to address questions of concern to primary care 
physicians or to develop primary care applications for new 
basic science discoveries. By current estimates, family 
physician investigators account for only $18.6 million 
annually. Yet these are the same physicians who provide the 
majority of health care contacts with the American people.
    We believe that the primary care research requires an equal 
place within the mainstream of the Federal scientific 
enterprise and that the new center for primary care research 
within AHCPR is a suitable home. If adequately funded, the 
centers programs will provide the Nation with invaluable 
information with which to control health care costs and to 
reduce morbidity and mortality, but it must be allowed to grow 
at a pace with other research initiatives. Our departments of 
family medicine are fully committed to the development of 
research infrastructure and eager to undertake challenging 
questions that are before us. We remain deeply concerned about 
the meager funding that persists for AHCPR and for its primary 
care initiatives.
    To summarize, we sincerely appreciate the efforts of this 
committee last year and hope that you can increase your support 
for these vital programs in fiscal year 2000 and beyond.
    Mr. Porter. Thank you very much, Dr. Dickinson, for your 
testimony. We appreciate your taking your time to come.
    Dr. Dickinson. Thank you, sir.
    [The prepared statement of Dr. John Dickinson, M.D., 
follows:]

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                                         Wednesday, April 14, 1999.

                        ONCOLOGY NURSING SOCIETY


                                WITNESS

LINDA U. KREBS, RN, PH.D., AOCN, PRESIDENT
    Mr. Porter. Dr. Linda U. Krebs, R.N., Ph.D., AOCN, 
president, Oncology Nursing Society.
    Ms. Krebs. Good afternoon. I am Linda Krebs. I am Assistant 
Professor of nursing at the University of Colorado School of 
Nursing and president of the Oncology Nursing Society, also 
known as the ONS.
    The ONS is a professional organization of more than 27,000 
nurses who are dedicated to the care of individuals with 
cancer. Our mission is to promote excellence in oncology 
nursing and quality cancer care. I want to thank the 
subcommittee for the opportunity to speak before you today.
    I wish to focus my comments on three specific areas: first, 
on recent changes in oncology care and needed resource dollars 
for oncology nurses; the second, funding for nursing research; 
and, third, funding for the education of advanced-practice 
nurses.
    As oncology nurses, we have a lot of things to be proud of. 
Despite this, we are gravely concerned about some of the 
changes that are occurring today. The future of oncology 
nursing is being threatened as never before and will affect the 
quality of care that individuals with cancer receive. This must 
not be allowed to happen.
    Funding for specialty nursing education and nursing 
research have reached a crisis point. Unless sufficient 
financial resources are available, quality cancer care will 
diminish and individuals with cancer will not receive the 
quality care they deserve and they need.
    First, I want to focus on oncology nursing at the bedside. 
Last year on the mall in front of the Capitol, thousands of 
cancer survivors and family members focused their attention to 
the site of Capitol Hill, while listening to politicians 
promise their support to rid our nation of cancer. Part of the 
war on cancer can be won by providing nurses who are the 
frontline caretakers of individuals with cancer, the needed 
resources to become competent cancer care providers.
    To assure quality, cancer care must be delivered by 
competent, educated, and certified oncology nurses, not just 
any nurse. This is really crucial. Right now specialty nursing, 
such as oncology, is being phased out; and oncology nurses are 
increasingly being told to generalize. Additionally, oncology 
units in hospitals and other places where patients are taken 
care of are seen in many instances as unnecessary and also are 
being phased out.
    The oncology units that are left are forced to decrease 
their nurse-patient ratios, leaving nurses harried and rushed 
and with little time to provide emotional support, patient 
education, and efforts to promote quality of life. These 
changes in the lack of funding for specialty nursing, including 
oncology nursing, hurt patients in the quality of care 
delivered.
    Second, I wish to focus on funding for nursing research. 
Oncology Nursing Society supports an increase of 20.4 million 
for the National Institute for Nursing Research, increasing 
NINR's budget to 90.253 million for fiscal year 2000.
    Currently, NINR has the lowest funding base at NIH and is 
funded for fiscal year '99 at 69.82 million. This funding was 
only a 10 percent increase over prior years. This is 
particularly concerning, for NINR is one of only two NIH 
institutions since 1995 to receive growing numbers of research 
proposals. And, indeed, NINR has projected that we will only be 
able to fund 19 percent of all the proposals that come forward 
to them. That is as opposed to NIH predicted averages of 33 
percent. NINR carries out the largest number of research 
initiatives, examining pain control and care for the terminally 
ill; and NINR has been designated as a lead institute at NIH to 
coordinate research on end-of-life care. NINR has already made 
significant inroads in identifying pain-reducing drugs that 
work better for women. Without adequate funding, this level of 
accomplishment will be diminished.
    A particular area where nursing research funds have the 
potential to make a significant impact is in lung cancer, 
particularly lung cancer in women, since this disease is now 
the leading cause of cancer death in all women. Nursing 
research into the best methods to manage lung cancer side 
effects, including fatigue, decreased appetite and associated 
weight loss, could decrease the burden on patients and families 
and improve quality of life and potentially impact survival. 
Vital patient oncology research cannot occur without sufficient 
funding.
    Third, I want to focus on education for advanced practice 
nurses. APNs manage the daily needs of individuals with cancer, 
educate patients about treatment, perform needed tests on 
advanced oncology research. Often they provide care in rural 
and medically underserved areas that lack other health care 
providers.
    Advance practice nurses will be needed on an increasing 
basis in our evolving health care system. Adequate funding for 
nurses seeking advanced degrees must be available, as they are 
essential for quality cancer care and the general health care 
of this country.
    In conclusion, I ask each of you to think of the 
individuals that you know with cancer. Many of those 
individuals will live with cancer for many years, while others 
will die from disease. Oncology nurses can and do make a 
difference in the lives and death of these individuals. You can 
assure that nurses at the bedside who care for these people 
provide quality cancer care and assist individuals experiencing 
cancer with quality of life and you can send a message to 
health care providers about the importance of oncology nursing.
    Finally, you have the ability to assure that nurses have 
available funding sources so they can retain advanced degrees 
and provide the care that people need. We thank you for this 
opportunity.
    Mr. Porter. Dr. Krebs, thank you very much for coming to 
testify today.
    [The prepared statement of Linda Krebs follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. I want each of the last five witnesses to 
realize that, although we didn't have time for questions, we 
will take their concerns into account as much as any of our 
other witnesses.
    The staff now wants to make an announcement, or have me 
make an announcement. I am going to recess the hearing for a 
brief period. As you know, Christopher Reeve is our next 
witness, and he is accompanied by a number of individuals who 
are in wheelchairs. I would ask the members of the audience if 
you are planning to stay for Mr. Reeve's testimony, please 
remain in your seats. If you are planning to leave, however, 
please exit the room through the rear door on my left and exit 
to the hall through the subcommittee offices. As you can 
imagine we need to keep the main entrance door clear for the 
next witness and those accompanying him. The subcommittee will 
stand briefly in recess.
    [Recess.]
                              ----------                              

                                          Wednesday, April 14, 1999

                      CHRISTOPHER REEVE FOUNDATION


                                WITNESS

CHRISTOPHER REEVE, PRESIDENT
    Mr. Porter. The subcommittee will come to order. Our next 
witness is Christopher Reeve, the President of the Christopher 
Reeve Foundation. And Mr. Reeve, we admire the courage and 
determination that you have shown in the face of the very 
serious injuries that you have sustained. It is an inspiration 
to all of us, and we very much appreciate your taking the great 
effort that it requires for you to come here and to testify 
this morning. It is actually this afternoon. Thank you very 
much. Please proceed. Mr. Hoyer.
    Mr. Hoyer. Mr. Chairman, if I can just briefly in joining 
you in welcoming Christopher Reeve, a man of courage and a man 
of vision to our hearing room. I was talking to him a little 
earlier. He is, of course, one of the best known actors that we 
have in America and, therefore, in the world. It is he who 
appeared in a movie called ``Superman,'' and Superman was 
physically, incredibly able and indestructible. Christopher 
Reeve found, as all of us know, that we are not indestructible, 
that we are subject to the vagaries of fate; but what we found 
in Christopher Reeve, it was not that his body was so strong, 
but that his will and his courage was so immense and to that 
extent he is a superman; and I want to take this opportunity, 
as you did, to thank him for what he is doing for millions of 
people throughout this world, not only who suffer or have had 
spinal cord injuries but the disability community generally. He 
talked about some 50-plus million Americans who have 
disabilities, not exactly like his but who are also challenged. 
And he has raised sensitivity and consciousness in our country 
and throughout the world and, Mr. Reeve, we welcome you and we 
thank you for your leadership and all that you are doing, and 
we look forward to your testimony.
    Mr. Reeve. Thank you very much. Congressman Hoyer and 
Congressman Porter, I would like to submit the formal testimony 
that you have received for the record. Mr. Chairman, committee 
Members, in 1913 a great Spanish neuroscientist, Santiago Ramon 
Y Cajal, concluded a treatise entitled ``Degeneration and 
Regeneration of the Nervous System'' by declaring, quote, ``In 
adult centers, the nerve paths are something fixed, ended, 
immutable. Everything may die. Nothing may be regenerated.''
    In the October 1988 correction, in the 1998 issue of Brain 
Work, a leading journal of neuroscience, researchers stated, 
quote, ``In spinal cord injury fatalism is finished, replaced 
by the certainty that scientists will find ways to help spinal 
cord victims recover.''
    We live in a time when the words impossible and unsolvable 
are no longer part of the scientific community's vocabulary. 
Each day we move closer to trials that will not just minimize 
the symptoms of disease and injury but eliminate them. You have 
heard from the directors of the NIH over the past few weeks of 
new medical interventions that will end epilepsy, Alzheimer's, 
Parkinson's, the devastating effects of stroke, chronic pain, 
organ rejection after transplantation. You have listened as the 
directors have outlined the details of an HIV vaccine, dramatic 
improvements in the effective treatment of drug addiction, 
mouse models that accurately reproduce human cancers in order 
to prevent early detection and interventions, and, of course, 
the miraculous mapping and sequencing of the human genome which 
is already changing the world of medicine and medical research. 
The rapid pace of these advances is occurring because you, the 
Congress of the United States and our President, had the vision 
in 1998 to increase funding for the NIH by 15 percent, and this 
momentum must not be slowed.
    Our government may operate under a budget that is decided 
from year to year. Our scientists cannot. New scientific 
initiatives, experiments, and laboratories across the United 
States, once nurtured and financed, operate on two- and three- 
and four-year plans, but we must not fund our scientists who 
have the potential to alleviate enormous suffering without 
giving them the assurance that we will not put on the brakes 
and stop the flow of dollars that will make their progress 
possible. And I quote from just two of the best investigators 
in the field, quote, ``Researchers are forced to fight for 
funds sufficient to continue their work; and if this pattern 
continues, whole segments of scientific and medical research in 
the United States could disappear'' That comes from Lorne 
Mendell, president of the Society of Neuroscience. And another 
quote, ``So much has been learned in just the last few years 
with the help of increased NIH funding. Whether effective 
treatments are found in 3 versus 30 years makes a world of 
difference to people affected by diseases of the brain and 
spinal cord.'' And that is from Dennis Choi, who is the 
president-elect of the Society of Neuroscience.
    I represent nearly 400,000 spinal cord-injured Americans 
and millions more around the world who now have a legitimate 
reason to believe that the day will come when they will rise 
out of these wheelchairs. Scientists are successfully exploring 
one of the last great mysteries of medicine, the frontier of 
inner space, the diseases of the brain and the central nervous 
system.
    And when I speak across the country, I ask stadiums full of 
Americans for a show of hands if their lives have been affected 
by Alzheimer's or stroke, ALS, MS, Parkinson's or spinal cord 
injury. Time and time again I look out onto a sea of raised 
hands.
    The life expectancy of Americans has practically doubled 
over the course of the last century, but we here today have the 
responsibility to ensure that those added years are onesof 
quality and productivity, not pain and suffering.
    I am privileged to communicate on a regular basis with 
scientists across our country and around the world. I recently 
spoke with Dr. Martin Schwab at the University of Zurich and 
Dr. Angela Vescovi at the National Neurological Institute in 
Milan. Dr. Schwab has developed a protein inhibitor that allows 
regeneration of nerves in the spinal cord. Dr. Vescovi has made 
a ground-breaking discovery regarding epidemal stem cells. 
These are undifferentiated cells whose primary function is the 
formation of the fetus during gestation. The common wisdom had 
always been that these cells are not present and in the adult 
mammal, but they've been found to exist in the ventricles of 
the brain and the spinal cord; and Dr. Vescovi has discovered 
that these cells are also found in the skin, so that thousands 
of these cells could be biopsied from the patient's skin and 
grown in the laboratory; and when injected into the site of the 
lesion in the cord, they are capable of becoming neurons and 
axons necessary to bridge the gap across the injury; and 
because only eight to ten percent of nerves in the cord are 
needed for sensation and motor function, it seems likely that 
an adequate number of appropriate connections will make the 
bridging technique successful; and because this therapy uses 
cells from the patient's own body, there is no question of 
toxicity or rejection by the autoimmune system.
    I asked Dr. Schwab and Dr. Vescovi if a lack of proper 
funding was impeding their progress. The answer from both of 
them was no, because Italy and Switzerland are funding basic 
science at the appropriate levels.
    The same week I spoke with these European researchers, I 
was honored to receive the first addition of a book edited by 
Dr. Mark Tuszynski of UC San Diego, a book entitled ``CNS 
Regeneration.'' This is the first textbook of its kind and one 
that could not have been written as recently as five years ago; 
but in a letter that accompanied the text, Dr. Tuszynski 
tempered his excitement about the extraordinarily rapid 
progress in the field with a plea for increased funding. 
Without your support, spinal cord victims will continue to sit 
in wheelchairs draining the resources of insurance companies as 
well as Medicaid, Medicare, V.A. Hospitals and nursing homes; 
but with your continued support, it is very possible that 
within the next three to five years people who are now 
afflicted with a wide variety of disabilities will be able to 
overcome them. They will regain their rightful place in society 
to rejoin the work force and at last be relieved of the 
suffering they and their families have had to endure. So the 
plea for adequate funding cannot be ignored.
    Now, some Members have expressed concern that researchers 
can't absorb a further increase in the budget.
    And I wish to express my opposition to that point of view. 
Evidence to the contrary is overwhelming. Over the last few 
years, the NIH has only been able to fund 22 percent of grant 
applications that have met the high standards of the evaluation 
process. Thousands of equally worthwhile proposals have been 
turned down because of budget constraints, including some of 
the most innovative ideas coming from young post docs and 
graduate students.
    This has led to an alarming conservatism in the funding of 
research. With an appropriate increase in the budget, the 
United States would be able to keep pace with foreign 
investigators who have the resources to conduct truly cutting 
edge experiments.
    In all my discussions with American scientists, I have 
asked them to estimate when human trials might begin. 
Unfortunately, I always get the same answer: it all depends on 
money.
    In 1961, President Kennedy presented a seemingly impossible 
challenge: to land a man on the moon and bring him safely back 
to earth and to accomplish it by the end of the decade. 
Scientists and technicians across the country shook their heads 
in disbelief because the technology was not yet available to 
accomplish this task. But with resources from the government, 
the support of the private sector, and the hard work of the 
over 400,000 Americans, we realized that vision.
    The Members of the subcommittee, you have brought us 
tantalizingly close to the moon's surface. Please give us the 
resources to enable us to make a safe landing and then bring us 
home. I urge you and your colleagues to pass a 15 percent 
increase in the budget of the National Institutes of Health for 
the fiscal year 2000.
    Thank you very much, and I would be pleased to answer any 
questions.
    [The prepared statement of Christopher Reeve follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. Mr. Reeve, thank you for your outstanding 
statement, what you said at the beginning about the impossible 
no longer being impossible, it is exactly right. What we hear 
from we listen to the NIH Directors, and next week we are going 
to have 56, including Dr. Varmus, Noble Laureates before the 
subcommittee. We understand the opportunities that have been 
opened through medical research and the need for additional 
resources to make those possibilities become realities. And 
regarding spinal cord research, again you are exactly correct, 
the possibilities were unimaginable very recently and now are 
very imaginable and, in fact, looking increasingly very 
possible.
    Congress initiated the effort to double funding for NIH and 
biomedical research last year. With the 15 percent downpayment 
it is unfortunate, and I know my Democratic colleagues agree 
with this that the President's budget reflects only about a 1.4 
percent increase, all of us in the Congress find that 
absolutely unacceptable. That is not going to occur. What we 
are going to do is to provide the maximum amount of resources 
that we possibly can, and, hopefully, and with your help, 
provide an additional 15 percent that I think will get us over 
the hump and well on our way to achieving the doubling over a 
5-year period.
    Your advocacy is making a tremendous difference. We often 
think that public policy is simply made by 535-elected 
representatives in Washington, but most Americans really 
realize deep in their hearts that they are the ones that make 
the public policy; and if they will let their voices be heard, 
they will be listened to.
    Your advocacy is generating the kind of support that we 
need to hear in Washington for doubling the budget for NIH over 
5 years. And so we ask your continuing help. You are already 
way out front, and doing exactly what I think needs to be done, 
but your continuing help will get us where we want to go. And 
together we will look forward to the time when you and others 
like you who have experienced such devastating injuries will 
leave the wheelchair and stand again, and be your normal 
selves.
    I think that, in fact, is within reach if only we will make 
the commitment to achieve it. And we thank you for coming here 
today and inspiring us in the way you are inspiring so many 
people across our country, making a difference and making 
happen what can happen. Mr. Hoyer.
    Mr. Hoyer. Mr. Chairman, thank you very much. Mr. Reeve, I 
agree with the Chairman, it was a compelling statement. And 
your courage is compelling. You and I discussed the passage of 
the Americans with Disabilities Act. It passed, not so much 
because those of us in the Congress advocated for it, it passed 
because Americans with various different kinds of disabilities 
came to the Congress and said we can do a lotof things, give us 
the opportunity to do it.
    And as I listened to your testimony, I thought to myself, 
what a compelling example you are serving for so many and the 
hope that you are giving to so many. And as you made the 
analogy to President Kennedy's commitment to get to the moon 
within the decade of the '60s, I was a young man and very taken 
with President Kennedy. As a matter of fact, got into politics 
because I was inspired by President Kennedy, and that was a 
major facet of the '60s. And the hope that we had that we could 
do something, as you point out, that was said to be impossible.
    But as I thought about it, as well, and I understand Neil 
Armstrong just spoke and a number of the astronauts spoke 
because of the anniversary, we look forward to you taking one 
small step for Christopher Reeve, which will be a giant step 
for mankind. That analogy of a small step for Neil Armstrong 
was a small step, and he had all the abilities to take that 
small step.
    When you take that step, it will be a giant step, not just 
for you, but for millions and millions of people currently 
suffering from a fateful accident, and raising their hands and 
stating in stadiums all over the world, yes, I know myself, my 
brother, my sister, my husband, my wife, my friend, my 
neighbor, my classmate, I know somebody who has been struck 
down by fate.
    John Kennedy, when he was speaking about some young people 
with mental disabilities, made a statement that I think is very 
apropos here. He said, ``Although these children are the 
victims of fate, they will not be the victims of our neglect.''
    I can tell you that Chairman Porter has been as strong a 
leader in the Congress of the United States as I have seen on 
behalf of NIH, on behalf of funding to make the breakthroughs 
that will make such a vast difference for individuals but, as 
importantly, for all the rest of us who will be advantaged by 
the empowering of those individuals to reach their full 
potentials.
    And I thank you for coming. I know obviously there are, I 
am sure, hundreds of groups, individuals who want you to appear 
someplace. And you can't possibly respond to them all. We have 
some small appreciation of that, but not on the magnitude that 
you confront. And you agreed to come, I will guarantee you that 
your statement will be known, made known to, not only the 
Members of this subcommittee, but all the members of the Senate 
subcommittee as well, as we focus on the adoption of the NIH 
budget for the next year and for the five years succeeding.
    Mr. Chairman, I want to thank you as well for your 
leadership on NIH funding, both on specifics and on general 
impact, because you are making a difference as well.
    Thank you very much, Mr. Reeve, for being with us today.
    Mr. Reeve. Thank you.
    Mr. Porter. Thank you, Mr. Hoyer. Let me thank, Mr. Reeve, 
and all the witnesses who have appeared before the subcommittee 
today. The subcommittee stands in recess until 2:00 p.m.
    Mr. Reeve. Thank you.
    [Recess.]
                              ----------                              

                                         Wednesday, April 14, 1999.

                    FLORIDA DEPARTMENT OF EDUCATION


                                WITNESS

TOM GALLAGHER, FLORIDA'S COMMISSIONER OF EDUCATION
    Mr. Porter. The subcommittee will come to order.
    We continue our hearings with public witnesses with our 
fourth panel of 10 panels or 200 witnesses that we have 
scheduled. And we are very pleased that the Chairman of the 
Appropriations Committee could be with us at the opening of 
this session to introduce Tom Gallagher, the Commissioner of 
Education of the State of Florida.
    Mr. Chairman, it is a real pleasure to have you here, and 
why don't you proceed in any way you wish.
    Mr. Young. Chairman Porter, thank you very much. And I want 
to compliment you for the way you have expedited the work of 
your subcommittee this year as we prepare to do our 
appropriations in a timely fashion this year. And we certainly 
appreciate the invitation to Commissioner Gallagher to be here.
    He has an outstanding record of public service in our great 
State of Florida. Mr. Gallagher and I both served in the 
Florida legislature many years ago, longer ago than either one 
of us likes to remember probably. He established a great record 
of public service and eventually became our commissioner, our 
State treasurer, and commissioner of insurance. He did an 
outstanding job there and has since become the commissioner of 
education in a very competitive political campaign statewide in 
which the opposition barely showed up on the polls.
    So he does have a good record of public service, especially 
in the field of education. And I am just really proud to have 
him here today and to present him to you as your first witness 
this afternoon.
    Mr. Porter. Thank you, Mr. Chairman. We are very pleased 
that you could come and join us on the subcommittee for this 
witness. And Mr. Gallagher, it is a pleasure to welcome you. 
Why don't you proceed with your statement and then we will see 
if we can ask some questions.
    Mr. Gallagher. Thank you, Mr. Chairman. Thank you Chairman 
Young, I certainly appreciate you taking time out to come down 
and introduce me. And also I want to thank you, Mr. Chairman 
Porter, for inviting Florida to be represented here today.
    The issue we are discussing is very important to Florida. 
And I certainly commend you, Mr. Chairman, for your leadership 
in education reform. As the largest Federal program for 
elementary and secondary education, the Elementary and 
Secondary Education Act provides critical funding for the 
states. With the ESEA up for reauthorization, it is imperative 
that states are treated fairly.
    Florida has specific objectives for the reauthorization. 
And they are: a more equitable share of the fundings in all 
programs, especially Title I and Title VII 
(bilingualeducation), and greater flexibility to realize program goals. 
Because Florida serves so many students who are identified as IDEA and/
or Title I, it is incumbent upon us to point out our concerns.
    Fairly fund bilingual education. The state is concerned 
that Florida is not receiving its proportionate share of Title 
VII funds for bilingual education. Florida has the fourth 
largest population of students with limited English 
proficiency, but ranks 7th in receipt of Title VII funds. 
Florida should not be penalized because it emphasizes the 
teaching of required English skills as an addition to the 
student's native language.
    Streamline classification of migrant children. We in 
Florida would like to see the costly and cumbersome process of 
classifying children as migrants for the purpose of receiving 
Federal funding streamlined. Count all students benefiting from 
50 percent threshold for schoolwide programs. Florida agrees 
with the 50 percent threshold for schoolwide programs in the 
current law, which permits schools with 50 percent poor 
children to use Title I funds in combination with other 
Federal, State and local funds to upgrade the instructional 
program for the entire school. We suggest that all children 
benefiting from these programs be counted in the formula for 
the generation of the funds.
    The enormous costs associated with implementing the 
individuals with Disabilities and Education Act and the 
increased burden on Florida. In 1975, the Federal Government 
committed to fund 40 percent of the costs for Education and 
Handicapped Act, now known as the IDEA. IDEA requires that 
services be provided to individuals with disabilities, age 3 to 
21. In Florida, 334,896 students with disabilities were served 
for a total cost of over $2.8 billion in '97 '98. Of this, the 
Federal contribution was 227 million or 11 percent.
    In order to meet the costs of implementing IDEA, Florida is 
reallocating existing State funds from some other programs, 
including educational programs, and committing new funds to 
ensure that students with disabilities receive a free and 
appropriate public education as required by law.
    These enormous costs are placing an increased burden on 
Florida. This burden may be exacerbated by the U.S. Supreme 
Court decision in Cedar Rapids Community School District v. 
Garret F, Case No. 96-1793 of March 3, 1999, which held that 
IDEA required a school district to provide nursing services for 
a ventilator-dependent student during school hours.
    Other State concerns include increased paperwork, 
inequities in student discipline policies, and overly 
prescriptive regulations associated with the 1997 
reauthorization of IDEA. Our office constantly hears from 
teachers, school administrators, parents and lay citizens about 
how much paperwork is related to IDEA and the dual system of 
discipline that students identified as ESE received. We simply 
must find a way to resolve these two issues.
    Florida currently is in the process of adopting the most 
sweeping educational reform package in history. Governor Bush's 
A+ Plan has passed the State house and is being debated in the 
Senate as I give this testimony. We believe that the measures 
the plan embraces, coupled with the Federal initiatives of 
Title I and IDEA, will help us deliver the kind of educational 
opportunities students need and deserve so they may compete in 
the world market.
    I thank you for the opportunity to share Florida's concern 
with this esteemed body.
    [The prepared statement of Tom Gallagher follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. Mr. Gallagher, thank you for your statement. We 
consider education and technology together to be the future of 
our country, and we place education at a very high priority. I 
think it is wonderful you came here to testify, because it 
gives me a chance to lobby my Chairman who is not just an ex 
officio member but a longtime member of this subcommittee and 
the one who is going to make the budget allocations within the 
next week or so. And, Bill, I want to take care of all the 
priorities Mr. Gallagher mentioned, if you will only give me 
the funds to do it.
    Mr. Gallagher. How long do we wait for the answer, Mr. 
Chairman?
    Mr. Young. Well, Mr. Chairman, thank you very much. And I 
appreciate those comments, and, you know, we have both worked 
on this subcommittee for such a long time. You know that I 
share those concerns, and we are going to do everything 
possible we can to meet the requirements of health, education 
and all the other issues that this subcommittee has 
responsibility for.
    I would have to tell you, Tom, that Mr. Porter is an 
outstanding chairman, he brings to the floor a very well-
thought out bill, one that has gone through the rigors of the 
members of the committee and you might suspect they have a lot 
of different viewpoints and philosophies represented. And John 
does a very good job of managing this bill and making sure that 
it works.
    And, Mr. Chairman, I will just say that, as you know, when 
we do the 302 B allocations, we will do the very best we can.
    Mr. Porter. Can I take that as a promise? Thank you, Bill.
    Mr. Young. Yes.
    Mr. Porter. Thank you very much, Bill, I appreciate that.
    And, Mr. Gallagher, thank you for coming to testify.
    Mr. Gallagher. Thank you, Mr. Chairman.
    Mr. Porter. We appreciate it very, very much.
    Mr. Gallagher. I appreciate the opportunity.
    Mr. Porter. Thank you.
    Before I recognize the next panel, I want to tell everyone 
who is here that this is the fourth of 10 panels of about 20 
witnesses each that will testify during our public witness 
portion of our hearings; that means 200 witnesses. And we must 
strictly enforce the 5-minute rule that we allow each witness 
to testify for 5 minutes. There is a clock up here that rings 
at the end of 5 minutes.
    We ask that you obviously complete your thought if you are 
in midsentence, but wind up as quickly as you can after the 5 
minutes and that will allow us to respect the time of all of 
those who follow you.
                                         Wednesday, April 14, 1999.

                  SPINA BIFIDA ASSOCIATION OF AMERICA


                                WITNESS

BARBARA J. EASTERLING, DIRECTOR, BOARD OF DIRECTORS
    Mr. Porter. Now, the next witness is Barbara J. Easterling, 
Director, Board of Directors, of the Spina Bifida Association 
of America.
    Ms. Easterling. Let me correct that, Mr. Chairman.
    Mr. Porter. That is fine.
    Ms. Easterling. I am Barbara Easterling, and I am the 
secretary-treasurer of the Communications Workers of America, 
but I am not here today on behalf of CWA, but rather on behalf 
of Spina Bifida Association of America of which I am a member 
of their national board of directors.
    I would like to thank the members of the subcommittee for 
allowing us, SBAA, to present testimony. Through the 
appropriation of funds for spina bifida, research will provide 
a vehicle to greatly improve the health and welfare of most 
persons with spina bifida, the number one most frequently 
occurring of permanently disabling birth defects in our Nation 
today.
    Spina bifida is a devastating birth defect and it affects 
approximately 1 out of every 1,000 newborns in the United 
States. And it results from the failure of the spine to close 
during the first month of pregnancy. More children have spina 
bifida than muscular dystrophy and cystic fibrosis combined. 
The average lifetime medical costs for a person with spina 
bifida is $535,000; however, the cost in many cases exceeds 
$1.2 million.
    Why has spina bifida received so little research attention? 
The SBAA believes that one reason is that the growing number of 
persons with spina bifida and the unchanged frequency of 
occurrences just now is being recognized in our Nation. Prior 
to the early '70s, a majority of babies born with spina bifida 
died. Presently, 85 percent to 90 percent of the babies born 
with spina bifida survive to adulthood, and we are just now 
seeing the first generation have the ability to thrive and lead 
self-sufficient and independent lives.
    SBAA is requesting the subcommittee to consider two areas 
of funding. The first is to support an NIH consensus 
conference, and the second is to appropriate additional funding 
to CDC. On the NIH consensus conference, as I stated 
previously, we are now seeing the first generation of persons 
with spina bifida grow into adulthood. Their care is an 
emerging health discipline, but the roadmap is unclear and the 
sign posts are few.
    A review of the literature provides minimal information 
about aging issues, secondary conditions, the impact of 
commonly practiced interventions over a lifetime, and evidence 
of which protocols are successful. With the exception of $8.9 
million in fiscal year '99 at NICHD and NINDS, very little is 
being done to discover strategies to promote health and 
wellness for persons with spina bifida.
    The questions are many and the answers are few. The history 
is spotty; the treatment, trial and error. Persons with spina 
bifida need your help to evaluate the minimal scientific data 
and develop a plan for action that will improve the quality of 
life for the over 70,000 persons with spina bifida.
    A NIH consensus conference would accomplish the following: 
Identifying and evaluate the existing scientific data regarding 
spina bifida and develop a plan that prioritizes the research 
and identifies early intervention research strategies and 
treatment protocols. And I respectfully ask for your support to 
increase the CDC budget for folic acid awareness, and this is a 
very important point.
    And to this point, my testimony has focused on persons with 
spina bifida, but what I find so incredible is that we have the 
means to prevent the occurrence of spina bifida by up to 75 
percent if the U.S. Public Health Service recommendation that 
all women of child bearing age consume 0.4 milligrams of folic 
acid, a B vitamin, daily prior to becoming pregnant were 
followed.
    A recent Gallop organization from a grant from CDC revealed 
the following, only 13 percent of those surveyed knew that 
folic acid would prevent spina bifida, and only 7 percent knew 
that folic acid needs to be taken daily before pregnancy, sadly 
the epidemic and, yes, we see it as that as a epidemic with 
thousands of spina bifida births per year, 12 births per day, 
the epidemic of folic-acid-preventable spina bifida continues 
essentially on unabated.
    SBAA is requesting the subcommittee to increase the 
existing 1.5 CDC folic acid awareness budget to $20 million. 
Compared to the average medical costs, and the medical costs 
only, of $535,000 per each person with spina bifida, the 
current budget figure pales embarrassingly.
    In conclusion, spina bifida and many Americans find it very 
difficult to pronounce, but many, many more Americans do not 
realize the population of persons with spina bifida is growing 
and aging. They are not aware of the depth of spina bifida's 
lifelong medical odyssey. These are the reasons that come 
before you today. These are the situations we cannot ignore.
    An NIH consensus conference will begin the process of 
improving the quality of life for the tens of thousands of 
persons with spina bifida. Greater support of folic acid 
education and awareness efforts through an increase in CDC 
funding will benefit countless numbers of yet to be born 
Americans. I cannot think of a more meaningful request, and I 
am honored to make it. I, of course, would like to express our 
appreciation to the subcommittee for giving me and SBAA the 
opportunity to come before you today and extend our sincere 
gratitude for your consideration. Thank you.
    [The prepared statement of Barbara J. Easterling follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. Ms. Easterling, I have been exploring for some 
time the use of particularly television to reach people with 
public service messages, information they ought to know. It 
does no good for us to uncover truths like folic acids prevents 
spina bifida if people don't get it in their heads and act on 
it. And it seems to me that we have a very powerful medium in 
television. We might have another in the Internet, but we 
clearly have it in television.
    And if we can I would like to see the networks and others 
who use our public airwaves do this on a voluntary basis; I 
don't see that likely to happen, unfortunately. And I would 
like to provide some funding so that CDC can get on the air 
with a message in the time when the audience is there to 
receive it. It would cost some money, but I think it might do a 
world of good to prevent the kinds of preventable diseases, 
like this one, that we know the answer to eliminating this 
disease, all we have to do is get people to understand it and 
act upon it.
    Ms. Easterling. Yes, very definitely. It just seems so, you 
know, so foolish that we could prevent 75 percent of the births 
if we could just get that message out.
    Mr. Porter. In the meantime we also have to, as you point 
out so directly in your testimony provide for those who have 
the disease, we will do our best.
    Thank you for testifying.
    Ms. Easterling. Thank you.
    Ms. Lowey. Mr. Chairman.
    Mr. Porter. Ms. Lowey.
    Ms. Lowey. Mr. Chairman, I just wanted to associate myself 
with your remarks and thank Ms. Easterling and those who are 
accompaning her for appearing before us. It seems to me, once 
again, you have laid out the facts so clearly that an 
investment of dollars, not only saves pain and suffering, but 
saves dollars. And I just hope we can work to convince those 
who can make it possible to get that investment in public 
messages, public education so that we can prevent the suffering 
and save the dollars which you wisely pointed out. And I thank 
you for your outstanding presentation today.
    Ms. Easterling. Thank you very much.
    Ms. Lowey. Thank you.
    Mr. Porter. Thank you, Ms. Lowey.
                              ----------                              

                                         Wednesday, April 14, 1999.

                      LUPUS FOUNDATION OF AMERICA


                                WITNESS

VAN TERRY BELL, CHAIRMAN OF THE BOARD
    Mr. Porter. I am going to take the prerogative of the Chair 
to go out of order, because we have a Member who is scheduled, 
who is very busy, here to introduce one of our witnesses. And 
so I am going to call on Van Terry Bell, the chairman of the 
Board of the Lupus Foundation of America accompanied by 
Congresswoman Carrie Meek of Florida, a Member of the 
Appropriations Committee. And, Carrie, we are delighted to see 
you and thank you for being with us.
    Mrs. Meek. Thank you, Mr. Chairman.
    Mr. Porter. And you proceed in any way you wish.
    Mrs. Meek. Mr. Chairman, I am here to say thank you to you 
and members of this committee, each year I appear before you 
for a very worthy cause and each year, you respond, and we want 
to thank you.
    Today I have with me Mr. Terry Bell, and I want you to get 
a good look at Mr. Bell. He is a very outstanding person. He is 
here to respond to this urgent need of having continued 
research monies and treatment monies for Lupus, one of the most 
devastating diseases in the history of health and medical 
resources in this country. Mr. Bell is sort of unique in this, 
Mr. Chairman, and Members of the committee, in that he has been 
on the front line of this fight against lupus.
    And we are in a war, Mr. Chairman, this is just a most 
extraordinary disease that this committee has ever listened to. 
And we are continuing, and we are sort of doubling our fights 
now. And we have a man who has been forced to take early 
retirement because of this devastating disease.
    And to me he is a great American and a man who has 
sacrificed for his country. He is retired from the Department 
of Defense, and he has dedicated all of his time and energy to 
volunteering for the Lupus Foundation of America. It is a 
foundation that has its efforts to fight and kill this 
devastating disease.
    He served at both National and local levels of the National 
Lupus Foundation, two terms as president of the Utah chapter. 
So he is here today, now in his capacity as president of the 
National Lupus Foundation. He has been there since 1996. He is, 
perhaps, the best person to explain to the subcommittee and 
anyone who is listening of the devastating effects of lupus.
    And I am pleased to be here today to introduce Mr. Bell and 
to say to you to please do as you have always done, you know 
when I come, I ask for money, Mr. Chairman, and that is why I 
am here, to ask for money, for research, for the lupus, which 
is a very devastating disease.
    And I thank you, Mr. Bell, for giving of your time.
    Mr. Bell. Well I would like to thank Representative Meek. 
Representative Meek has been a very good friend to the Lupus 
Foundation and to our cause. She has been our champion for a 
number of years now, and we appreciate everything that she does 
for us, as well as all of the other members of Congress.
    Mr. Chairman and Members of the committee, I am very 
grateful that you have asked me to testify today. I am Van 
Terry Bell, chairman of the board of directors of the Lupus 
Foundation of America. The Lupus Foundation of America 
represents the 1.4 million Americans who suffer from lupus 
erythematosus, an incurable, widespread and often very 
devastating autoimmune disease.
    As Representative Meek said, I am one of the people that is 
afflicted by lupus, and I do receive services from our 
organization. I would like to thank Chairman Porter and the 
members of the subcommittee for the 15 percent increase that 
was given to the National Institutes of Health last year. Even 
at these increased levels, however, many promising studies 
continue to go unfunded. And I would like to ask the 
subcommittee today to keep the NIH budget on track to double 
over the next 5 years.
    The Federal Government really doesn't have a grasp on how 
much it currently spends on direct outlays to provide services 
to people with lupus. The Lupus Foundation of America estimates 
that the Federal Government spends several billions annually 
just to provide disability income paymentsto people who are 
disabled from lupus. This doesn't take into account Medicare, Medicaid, 
and it really doesn't take into account the personal devastation that 
people suffer as a result of having lupus. Lupus is an autoimmune 
disease that causes the immune system to become overactive and attack 
the body's own tissues and organs.
    Researchers recognize lupus as the prototypical autoimmune 
disease. Lupus and other autoimmune diseases are the fourth 
leading cause of disability in women. At the present time, 
there is no cure for lupus, and researchers really don't fully 
understand what causes the disease. We still don't know why 
lupus alternates between periods of remission and flares. We 
don't know why one person might have a mild case of lupus while 
other people might have a very life threatening case that would 
cause death.
    What we do know, Mr. Chairman, is that lupus, even mild 
lupus, devastates its victims and has a very, very significant 
impact on the family. The divorce rate among people with lupus 
is twice that of the National average. 90 percent of its 
victims are women. Lupus is 2 or 3 times more likely to affect 
African Americans, Hispanics, Asians, certain North America 
Indian tribes than Caucasian women. Lupus also appears to be 
more serious in African American women. We don't know why lupus 
seems to have a greater impact on women of color. And we feel 
more research must be initiated to answer these very, very 
important questions.
    I began to develop symptoms in 1983. Over the next 12 
months, my health continued to decline. I first had intense 
joint pain, arthritis, and overwhelming fatigue, a fatigue to 
this day that I cannot put into words. I couldn't go to my 
children's soccer games and other outdoor activities without 
getting a rash, becoming ill, and having to spend a couple of 
days in bed. I started having fevers almost every day, then 
they were every day. Then I began to have chest pains and 
difficulty breathing.
    Tests revealed that I had pericarditis, an inflammation of 
the sacs surrounding the heart; pleurisy, an inflammation of 
the lungs; and endocarditis, which, very simply put, is a 
buildup of plaque around the valves of the heart which can be 
very, very serious. After a year of seeing several doctors, 
undergoing countless medical tests, spending thousands and 
thousands of dollars and getting many false diagnoses, I 
received a diagnosis of lupus.
    I have been hospitalized approximately 15 times in the past 
16 years for lupus-related problems. On one of these occasions, 
I was very, very ill and very easily could have died. I now 
have chronic progressive lung disease as a result of having 
lupus. And the drugs I have to take are so toxic I have to take 
still more drugs to offset their side effects, and I am not 
unique in that regard. I take Prednisone, an immunosuppressant 
to suppress my immune system and to control the inflammation. I 
take Voltaren and cataflam, both of those are nonsteroidal 
drugs to help with arthritic and muscle pain. I take zocor, to 
lower my cholesterol elevated as a result of taking Prednisone.
    I take Zoloft an antidepressant. The lupus disease itself 
causes depression so does taking Prednisone. I take oxycontin, 
which was a very powerful narcotic, to help with the pain in my 
spine that is due, in part, to use of long-term steroids. And I 
take Zantac to control the effects on my stomach of all of the 
medications that I just mentioned to you.
    There are too many young women in this country, Mr. 
Chairman, and young men being diagnosed with lupus in their 20s 
and 30s and dying in their 30s and 40s from heart disease as a 
result of the medications that they are required to take.
    As you can see, Mr. Chairman, lupus is not an easy disease 
to treat, diagnosis is even more difficult to live with. We 
desperately need to find better therapies and a cure. I urge 
Congress to double the NIH funding over the next 5 years. There 
are many current scientific studies that already exist for 
studying lupus. They are studies that offer hope of finding a 
cure. Annual funding is needed to bring lupus-related research 
to a sufficient level to solve the urgent health problems that 
exist so that I and the 1.4 million Americans like me don't 
have to live in pain, don't have to suffer, and don't have to 
live with the fear of dying.
    I would like to thank you for inviting us here today to 
testify for you, and I would be glad to answer any questions.
    [The prepared statement of Van Terry Bell follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. Mr. Bell, one hardly knows what to say in 
response to the health problems that you have experienced. I am 
familiar with some of the drugs you mentioned, Prednisone for 
one. And I know how powerful they are and what kind of effects 
they can have on you as side effects to what they help with.
    Do we have any indication, is there an indication that 
this--there may be environmental causes for this disease or do 
we have just very little idea?
    Mr. Bell. Well, it seems that there is an external trigger 
along with other things that cause lupus. We are now looking 
into--the chairman of our medical counsel is on a task force, 
it is actually, I believe, the worldwide task force that is 
looking into the environmental triggers of lupus and whether 
they can be--we know that stress causes lupus, external stress.
    Many women are often diagnosed shortly after pregnancy, 
which is definitely a stress on the body, but they are looking 
into chemical, as well as other environmental triggers, to 
trigger lupus.
    Mr. Porter. We are going to have a special hearing after 
our hearings are completed, our regular hearings are completed, 
and going to focus on environmental health concerns, 
particularly as they relate to children. Obviously, we want to 
do what you are asking us to do.
    We managed to increase biomedical research funding by 15 
percent last year, that cannot be an isolated incident. If we 
go back down to the figures, for example, contained in the 
President's budget, we will drive people out of research who 
ought to be attracted to research.
    We have got to continue to keep the commitment through the 
entire five-year period and double NIH over a five-year period. 
And I know Congresswoman Meek is committed to that as I am.
    Mrs. Meek. Yes, yes.
    Mr. Porter. And obviously money is needed for lupus 
research. And when you hear that a disease, we don't know the 
cause of it and we don't have any means of, except for very 
powerful drugs that have their own effects, for alleviating the 
symptoms of it, it seems to me that we can do much better in 
terms of the discovery if we put some resources there and get 
where we want to go. So we are going to try to do what you want 
us to do. We thank you for being here to testify.
    I want to say to all the people in the room who are 
concerned about any of the subjects before our subcommittee, I 
say this often, you may think that these decisions are simply 
made by 535 of us here in Washington in the legislative branch 
of the government. They are really made by the American people, 
and to the extent that you let your voices be heard and impact 
your Members of Congress and your Senators with a message that 
this ought to be a very high priority for our country, to that 
extent, our work is made that much more easy, and we can get to 
where all of us want to go. So thank you very much.
    Mr. Bell. Thank you.
    Mrs. Meek. Thank you very much.
    Ms. Lowey. Mr. Chairman?
    Mr. Porter. Ms. Lowey.
    Ms. Lowey. I just wanted to again associate myself with our 
outstanding Chairman and thank Mrs. Meek and Mr. Bell for 
appearing before us. And our Chairman, as usual, has shown his 
extraordinary commitment to investing in medical research. And 
I think his last remarks should be heeded well.
    I have a strong group of volunteers who are involved with 
lupus in my district, and they really have devoted their lives 
to prevention, to finding a cure. And this Chairman has shown 
extraordinary leadership. And it is going to be up to 
volunteers in my district, volunteers around the country, 
average citizens to let every Member of Congress know that this 
is a battle we have got to win. And I personally want to thank 
our Chairman for the leadership, and thank you for taking time 
to be such a fighter and such a leader to bring an end to the 
pain and suffering that I know this brings.
    And I thank you very, very much Carrie. You are a 
wonderful, wonderful Member of Congress.
    Mrs. Meek. Thank you.
    Mr. Bell. Thank you, Mr. Chairman.
                              ----------                              

                                         Wednesday, April 14, 1999.

                  DYSTONIA MEDICAL RESEARCH FOUNDATION


                                WITNESS

ROSALIE LEWIS, PRESIDENT
    Mr. Porter. Thank you. The next witness is Rosalie Lewis, 
the President of the Dystonia Medical Research Foundation which 
I believe is located in the City of Chicago, is that correct?
    Ms. Lewis. Yes, it is.
    Mr. Porter. There you are. How are you?
    Ms. Lewis. The foundation is located in Chicago, but I am 
in New York.
    Ms. Lowey. Yay.
    Mr. Porter. That gets both of us. Ms. Lewis, please 
proceed.
    Ms. Lewis. Thank you very much. Congressman Porter, it is a 
pleasure to be here and I am extremely grateful to be allowed 
to inform you of dystonia. As you said, I am Rosalie Lewis, 
president of the Dystonia Medical Research Foundation. And 
sitting next to me is Sally Presti, regional coordinator for 
the mid-Atlantic states. From my three sons, who have dystonia, 
and the estimated 300,000 other children and adults living with 
the disorder, I would like to tell you why we so desperately 
need your help.
    Dystonia is a neurological disorder characterized by 
involuntary muscle contractions and sustained postures. There 
are several different types of dystonia: Generalized dystonia 
which affects many parts of the body and usually begins in 
childhood. My sons, Benjamin and Daniel, have generalized 
dystonia, which is progressive and began at the age of seven. 
Focal dystonia is affecting one specific part of the body such 
as the eyelids, vocal cords, neck, arms, hand or feet. My son 
Aaron has a focal dystonia of the hand, essentially making 
normal penmanship impossible. And secondary dystonia, which can 
result from brain injury or illness. Mrs. Presti developed 
dystonia as a result of a brain injury and was finally 
diagnosed 3 years after her accident at the National Institute 
of Neurological Disorders and Stroke. The diagnosis was post-
traumatic progressive generalized dystonia.
    The Dystonia Medical Research Foundation is dedicated to 
serving people with dystonia. The goals of the foundation are 
to advance research into the causes of and treatments for 
dystonia; hopefully, to find a cure; to build awareness of 
dystonia in both the medical and lay communities; and to 
sponsor patient and family support groups and programs.
    The foundation conducts medical workshops and regional 
symposiums during which comprehensive medical and research data 
regarding dystonia is presented, discussed, and disseminated. 
In October 1996, the National Institutes of Health was one of 
our cosponsors for an international medical symposium featuring 
60 papers on dystonia and 125 representatives from 24 
countries.
    We anticipate our next medical symposium in the year2001, 
and we will have a preliminary workshop later this year in May. The 
Dystonia Medical Research Foundation recommends that the National 
Institutes on Neurological Disorders and Stroke and the National 
Institute on Deafness and other communication disorders be funded in 
fiscal year 2000 at $1.04 billion and $264.4 million respectively, a 15 
percent increase over fiscal year 1999 for both.
    Because dystonia is the third most common movement disorder 
after Parkinson's and tremor, and affects Americans six times 
more often than most better known disorders such as 
Huntington's, muscular dystrophy, and Lou Gehrig's disease. We 
ask that NINDS fund dystonia specific extramural research at 
the same level it supports research for these other 
neurological disorders.
    The Dystonia Foundation would also encourage the 
subcommittee to support NIDCD in its efforts to revamp its 
strategic planning process and to support NINDS with its 
priorities and plans for neuroscience in the new millennium. 
We, the foundation, believe that with your help more treatments 
and a cure are in the near horizon.
    This will not only help my sons, Aaron, Benjamin and 
Daniel, but Mrs. Presti and the hundreds of thousands of others 
as well who suffer with this disease. Thank you once again for 
your time and attention. And I would be happy to answer any 
questions that you might have.
    [The prepared statement of Rosalie Lewis follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. Ms. Lewis, thank you for your testimony. Ms. 
Presti, thank you for being with us. We are going to do the 
best we can to do exactly what you asked. I have said to each 
of the panels that have come here that this is not going to be 
an easy task this year. We do have a budget resolution, it was 
passed this morning. I imagine the Senate has also passed their 
version.
    And we will probably have allocations as early as next 
week, that will give us an idea of the resources we have to 
work with on this subcommittee in order to meet the high 
priorities that lay before us. And you are going to see some 
ups and downs in the process, but I think eventually we will 
get to where we want to go and where you want us to go. So 
thank you for being with us today. Thank you for your 
testimony.
    Ms. Lewis. We always feel that your heart is with us every 
step of the way.
    Mr. Porter. Thank you.
    Ms. Lewis. Thank you.
    Mr. Porter. Thank you. There is one vote, with the 
possibility of a second vote, the subcommittee is going to have 
to stand briefly in recess.
    [Recess.]
                              ----------                              

                                         Wednesday, April 14, 1999.

                      IMMUNE DEFICIENCY FOUNDATION


                                WITNESS

RICHARD BARR, M.D., MEMBER, BOARD OF TRUSTEES
    Mr. Porter. The subcommittee will come to order.
    We continue our public witness hearings with Dr. Richard 
Barr, M.D., member of the board of trustees of the Immune 
Deficiency Foundation.
    Dr. Barr, welcome.
    Dr. Barr. Thank you. Congressman Porter and members of the 
subcommittee, thank you for the opportunity to testify today on 
behalf of the Immune Deficiency Foundation.
    Primary immunodeficiencies are a group of genetic diseases 
that share in common an inability of the individual's immune 
system to combat infection. They affect an estimated 40,000 
individuals infants, children and adults and if not diagnosed 
early and treated properly lead to significant illness and 
early death.
    The Immune Deficiency Foundation is the national 
organization dedicated to improving the lives of these 
individuals. I am here today to speak as both a patient and a 
physician.
    My case is quite representative of a typical immune 
deficient patient. I was diagnosed with common variable immune 
deficiency 10 years ago following years of repeated infections 
which were unresponsive to antibiotics and undiagnosed by 
numerous physicians who were colleagues of mine. This led to 
numerous unsuccessful surgeries resulting in permanent lung and 
sinus damage.
    Prior to my diagnosis, a day was considered successful if I 
had enough energy to get out of bed. Following appropriate 
diagnosis and treatment with intravenous immunoglobulin, IGIV, 
I was able to return to my medical practice and have a new 
lease on life. IDF works to improve the clinical awareness and 
treatment of immune deficiencies.
    Since 1997, IDF has had a contract with the National 
Institutes of Allergy and Infectious Disease to construct and 
maintain registries of eight primary immune deficient diseases. 
The goal of the registries is to assemble a comprehensive 
clinical picture of each disorder, including estimates of the 
disease prevalence, clinical course and complications. This 
data will be an invaluable source for physicians doing basic 
research.
    Further expansion of these registries is essential if we 
are to increase our understanding of primary immunodeficiency 
diseases and the immune system in general.
    The majority of primary immune deficient patients receive 
IGIV and body replacement therapy. IGIV is derived from pooled 
plasma and is administered intravenously for the life of the 
patient. I have been receiving this therapy since my diagnosis.
    In the past, when patients received this life-saving 
treatment, they were primarily concerned with the potential 
transmission of blood-borne pathogens, HIV and hepatitis 
Cprimarily, and the considerable difficulties associated with frequent 
infusions. However, since the fall of 1997, a new and greater concern 
arose, an inability to obtain IGIV. Due to a confluence of 
circumstances, the U.S. marketplace has been unable to meet the needs 
of patients who are dependent on IGIV. Demand simply exceeded supply.
    Moreover, despite a number of promises by both government 
and industry to increase production and expedite new product 
licensure, today we are in shorter supply than at any time in 
recent history. In 1998, the U.S. shortfall was 5 million 
grams; and industry currently estimates that only a 9-day 
supply of IGIV is available. Imagine knowing that a life-saving 
therapy exists for your child and living with the fear that it 
may not be available tomorrow.
    The shortage has prompted several U.S. manufacturers and 
numerous offshore companies to attempt supply solutions. U.S. 
manufacturers want to introduce new products and technologies 
that will increase the yield of each donor pool, thereby 
increasing final product supply. Because the rest of the world 
is not experiencing a shortage, offshore companies would like 
to import their IGIV products which have been in therapeutic 
use in their own countries for a number of years.
    Regulatory requirements dictate that these products be 
proven safe and effective in the U.S. through clinical trials. 
Clinical efficacy in a study can take years to assess, time we 
don't have under the current health care crisis.
    IDF has worked closely with FDA and industry to propose 
solutions, including a revised clinical trial protocol allowing 
for numerous trials to be conducted concurrently. In addition, 
NIAID has expressed an interest in investigating the mechanisms 
of action in IGIV. We encourage the subcommittee to support 
this important research.
    Finally, in spite of the IGIV shortage, IGIV usage 
continues to expand as a long-term treatment of other chronic 
disease states. The medical community is aware of a number of 
reported cases of unexplained central nervous system disorders 
experienced by immune deficient patients who receive ongoing 
IGIV therapy. Blood carries with it inherent risks which 
increase for life-long recipients. Although all of the 
currently used products are virally inactivated there are 
concerns about new and emerging pathogens and their ability to 
be transmitted through blood. Specifically, now IDF would 
welcome a joint collaboration between the Centers for Disease 
Control and Prevention and the FDA in conducting surveillance 
within the immune-deficient patient population to evaluate the 
experience of the only long-term and frequent recipients of 
IGIV.
    Mr. Chairman and members of the subcommittee, thank you 
again for the opportunity to testify today. In closing, I want 
to state the Immune Deficiency Foundation's strong support for 
a 15 percent increase in funding for NIAID in fiscal year 2000. 
I would be happy to answer any questions.
    Mr. Porter. Dr. Barr, thank you for your testimony.
    [The prepared statement of Dr. Richard Barr, M.D., 
follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. I assume that immune deficiency can be detected 
by a simple blood test; is that right?
    Dr. Barr. That is generally true, yes.
    Mr. Porter. You just suggested you needed for the 
surveillance some kind of cooperation between FDA and CDC? Why 
can't CDC do that alone?
    Dr. Barr. I am going to defer, if I can, to Miriam O'Day 
with our Immune Deficiency Foundation to specifically answer 
that. I can't.
    Ms. O'Day. Thank you for your question, Chairman Porter.
    They could, in fact, conduct that surveillance alone; but, 
in cooperation with FDA, they may be able to share information. 
Our hope was that if there are a number of clinical trials 
being conducted concurrently that there are blood draws already 
being taken and that NIAID could cooperate with CDC.
    Mr. Porter. The only reason I ask that is we don't have 
jurisdiction over FDA. That is the only part of HHS that we 
don't have jurisdiction over in this subcommittee, and it seems 
to me that if we are dependent upon getting cooperation from 
FDA rather than simply having CDC do it that wouldn't be as 
easily accomplished.
    Ms. O'Day. We thought we would offer an interagency 
approach, but certainly CDC could conduct the surveillance 
alone.
    Mr. Porter. Is there any indication they are going to do 
that?
    Ms. O'Day. They have had some interest; but, again, we 
would ask for some appropriation money to be set aside for 
that.
    Mr. Porter. Let me take a look at it.
    Thank you very much, Dr. Barr.
    Dr. Barr. Thank you.
                              ----------                              

                                         Wednesday, April 14, 1999.

                      NATIONAL MEDICAL ASSOCIATION


                                WITNESS

GARY C. DENNIS, M.D., PRESIDENT
    Mr. Porter. Dr. Gary C. Dennis, M.D., President of the 
National Medical Association.
    Dr. Dennis.
    Dr. Dennis. Good afternoon, Chairman Porter, members of the 
subcommittee. Thank you for the opportunity to present the 
views of the National Medical Association. I am its President. 
I am also the Chief of Neurosurgery at Howard University.
    Just to give you a little background on the National 
Medical Association, we represent over 20,000 African American 
physicians primarily and we also have about 199 State and local 
societies all over America. Today, though, we would like to 
highlight some of our Association's specific funding 
recommendations for fiscal year 2000. My complete written 
statement, though, has been presented for the record. Because 
of time I will just abbreviate my comments.
    As Congress and this subcommittee contemplate doubling the 
NIH budget, there is historic opportunity to actually do more, 
to actually begin to fund more efforts that are targeted 
towards health care disparities that exist in our Nation's 
minority populations. And of course earlier today you heard 
testimony about lupus being a problem in minority communities, 
especially African Americans, but so are most diseases, cancer 
especially, prostate cancer, diabetes, HIV, AIDS, injuries, you 
name it, and there are problems there.
    We feel that in order to address these problems more 
specifically, there should be increased funding for the NIH 
Office of Research on Minority Health. We also strongly 
recommend that the NIH elevate this office from its current 
status to the status of a center which addresses domestic 
health care disparities, which is really one of the major 
objectives of the National Institutes of Health now. This would 
enable NIH to ensure research targeted towards minorities is 
carefully and strategically coordinated across institutes. It 
would increase the office's budget and allow the office to make 
grants from its own budget to fund important minority-focused 
biomedical research products and essentially allow it to fund 
peer review research. It would also help to address the often 
systematic oversight of minorities in clinical trials, which is 
continuing to be a problem.
    NIH needs this and NMA recommends that the process for 
funding the Office of Research on Minority Health to center 
status should be modeled after the recent elevation of the 
Office of Alternative Medicine to the Center for Complementary 
and Alternative Medicine.
    The NMA also urges the subcommittee to substantially 
increase proposed funding for health professions training 
programs at HRSA above the administration's recommended 2000 
budget allocation of $252 million. This represents a $50 
million cut, and although the administration's proposal does 
provide $16 million of increase for training for diversity 
programs, the NMA strongly supports that. The funding cuts that 
really affect the health professions training programs are 
really a dangerous precedent, and these funding cuts would 
negatively impact the ability of minorities to pursue careers 
in health.
    NMA also strongly supports continued funding for Howard 
University as well as historically black colleges and 
universities who train many health care professionals that 
serve our communities. As the administration makes closing the 
health care disparities gap a major priority, the NMA strongly 
supports increasing funding for the Office of Minority Health 
itself. While a minimum increase of $2 million would provide 
additional funds in line with the overall increase provided for 
HHS, significantly more support is needed to address the goals 
established by the Health Disparities Initiative. The disparity 
health status of our racial ethnic minorities are in many ways 
byproducts of historic and ongoing racial discrimination 
against African Americans and other minorities.
    The NMA also strongly urges Congress to commission a 
national study on racism in medicine with particular attention 
paid to medical education in the health care delivery. A recent 
Georgetown study really highlights the need for it, where black 
women were referred for life-saving cardiac diagnostic and 
treatment service only 40 percent as often as white men, while 
black women have a very high mortality rate due to cardiac 
disease. So there clearly are some disparities there that 
reflect on racial biases and stereotypes throughout medical 
education which need to be addressed.
    A clear understanding of the extent to which racism is 
engrained in the practice of medicine and health care delivery 
and the education of health profession students is absolutely 
essential to this effort to eliminate health care disparities 
by 2010.
    In closing, Mr. Chairman and members of the committee, I 
would like to thank you for the opportunity to present the 
views of the National Medical Association and I am pleased to 
respond to any questions you may have.
    [The prepared statement of Dr. Gary Dennis, M.D., follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. Dr. Dennis, we obviously are sympathetic to the 
health disparities situation that you describe in your 
testimony. We are going to do the best we can to address that.
    As far as moving the office to a center status, it has been 
done in our bill. It was done recently, as you know, but it was 
done in negotiation that took place in the context of an 
omnibus bill, and very frankly it is an authorizing matter that 
we don't want to do. We want the authorizers to do their work 
and to make these decisions and leave us to do our work and 
provide funding according to the priorities as we see them.
    So I think you are going to see a lot of resistance, at 
least this year in all of the bills, not just our bill, to 
putting in authorizing provisions and appropriations bills, and 
I would urge you for that reason to take this concept to the 
authorizing committee, to Congressman Bilirakis I think they 
would have jurisdiction, I am almost certain they would and to 
suggest to him that this is what you believe to be an 
appropriate approach.
    In other words, I am definitely not promising to put any 
authorizing provisions in the bill. We think we want to keep 
the bill an appropriations bill and have the authorizing done 
where it should be done.
    Dr. Dennis. Thank you.
    Mr. Porter. This doesn't indicate any hostility to the 
concept, simply hostility to making our bill an authorizing 
vehicle. Thank you very much for your testimony.
    Dr. Dennis. Thank you very much for your advice.
                                         Wednesday, April 14, 1999.

               AMERICAN SOCIETY OF CLINICAL PATHOLOGISTS


                                WITNESS

SHIRLEY GREENING, PROFESSOR AND CHAIR OF THE DEPARTMENT OF LABORATORY 
    SCIENCES, THOMAS JEFFERSON UNIVERSITY, COLLEGE OF HEALTH 
    PROFESSIONS
    Mr. Porter. Shirley Greening, Professor and Chair of the 
Department of Laboratory Sciences, Thomas Jefferson University, 
College of Health Professions, representing the American 
Society of Clinical Pathologists. Ms. Greening.
    Ms. Greening. Good afternoon, Chairman Porter. My name is 
Shirley Greening, and I am from Thomas Jefferson University in 
Philadelphia. I am here today representing the American Society 
of Clinical Pathologists through the ASCP.
    ASCP's 75,000 members include board-certified pathologists, 
other physicians, clinical scientists, and certified 
technologists and technicians, and is the leading organization 
for the certification of laboratory personnel. ASCP has 
testified in the past about the effectiveness of the Allied 
Health Project Grants program, and your favorable responses to 
the successes of the program are very greatly appreciated.
    I am here today to express concern about the outlook for 
allied health professionals: in general for allied health 
professionals; in particular for laboratory professionals. 
ASCP's Board of Registry, in conjunction with MORPACE 
International, conducts a biennial wage and vacancy survey of 
2,500 medical laboratory managers. The 1998 data has just been 
made available and the information regarding cytotechnologists 
those are the professionals who interpret cellular material or 
Pap smears medical technologists in rural areas and 
histotechnologists, the people who prepare tissue specimens, is 
of particular interest and particular concern.
    The current vacancy rate for staff cytotechnologists is 
10\1/2\ percent. This is a 3 percent increase over the 1996 
rate which was 7.1 percent. This is the first increase in this 
vacancy rate in 8 years. The vacancy rate in rural areas is 
17.6 percent. The vacancy rate for cytotechnologists and 
supervisors in small- to medium-size cities is 20 percent.
    The vacancy rate for histotechnologists is also alarming. 
In the northeast region of this country, there is a vacancy 
rate of 25 percent and for hospitals with less than 100 beds, 
there is a whopping 30 percent vacancy rate for 
histotechnologists. While there was only a moderate increase in 
the vacancy rate for medical technologists, the vacancy rate in 
rural areas is at a high 17.9 percent.
    These data certainly show cause for concern. With high 
vacancy rates, there is concern that some laboratories will not 
have the appropriate personnel available to evaluate Pap 
smears.
    I brought with me an enlargement of cells from cervical 
cancer so you can see what cytotechnologists look at and 
evaluate in making these cancer determinations.
    Given the country's aging population, too, the number and 
complexity of biopsy specimens and molecular techniques will 
likely increase during the next decade. The real threat of 
bioterrorism also calls for trained laboratory professionals to 
respond. The laboratory allied work force will need to be able 
to react accordingly with appropriate numbers of trained and 
educated personnel. The Allied Health Project Grants program 
has been successful in effectively attracting new allied health 
professionals into the laboratory field, especially in rural 
and underserved areas. For example, of the 64 graduates of the 
University of Nebraska Medical Center Allied Health Project 
Grant program, 95 percent of them took their first job in a 
rural community.
    The grants are also designated to create successful 
minority recruiting and retention programs for medical 
technologists. This was the focus of a University of Maryland 
allied health project where they have attained a 54 percent 
minority medical techology student enrollment at a majority 
institution and an average 95 percent student retention rate, 
placing it among the highest in the country.
    Most Allied Health Project Grant programs continue after 
Federal funding ends, making them a long-lasting and worthwhile 
investment in the future of allied health. The Allied Health 
Project Grants program is a relatively small step in assuring 
that funding is available to attract allied health 
professionals to health careers and to underserved communities. 
Without providing grant seed money to establish these programs, 
there may be one less person to help in the struggle against 
antimicrobial resistance, one less contribution to an early 
diagnosis of cervical cancer, one less asset to employing the 
study of emerging infectious diseases.
    Thank you again for the opportunity to speak to you today. 
I would be pleased to answer any questions.
    [The prepared statement of Shirley Greening follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. Ms. Greening, thank you very much for your 
testimony. We are going to try to do what you want us to do. 
Everybody should keep their fingers crossed about our 
allocation. We will see what we can do. Thank you for coming to 
testify.
    Ms. Greening. Thank you, sir.
    Mr. Porter. We are so far behind because of the votes that 
have occurred. I am going to try to limit my questions. I hope 
witnesses will understand that doesn't indicate any lack of 
interest, but in the interest of having some reasonable chance 
to finish at some reasonable time, I am going to limit my 
questions.
                              ----------                              

                                         Wednesday, April 14, 1999.

                          LEGAL ACTION CENTER


                                WITNESS

MARGO PRESTON, PROGRAM COORDINATOR FOR THE LAKE COUNTY HEALTH 
    DEPARTMENT WOMEN'S RESIDENTIAL SERVICES
    Mr. Porter. Next, Ms. Margot Preston, Program Coordinator 
for the Lake County Health Department's Women's Residential 
Services that is located in Libertyville, Illinois, the 10th 
Congressional District, to testify on behalf of the Legal 
Action Center. And I understand that you don't live in my 
district; is that right?
    Ms. Preston. I did, but I moved.
    Mr. Porter. You work in my district and don't live in my 
district.
    Ms. Preston. I moved one mile across the State line. The 
yard is lovely. I have trees.
    Mr. Porter. We have lovely yards on our side.
    Ms. Preston. Good afternoon. I am Margo Preston with Lake 
County Health Department's Women's Residential Services. I have 
been the Program Coordinator for that service for the past 10 
years, part of which time I did live in your district.
    I thank you for this opportunity to testify in support of 
fiscal year 2000 funding for Alcohol and Drug Treatment 
Prevention and Research programs in the Departments of Health, 
Human Services, and Education.
    Today I am representing the National Coalition of State 
Alcohol and Drug Treatment and Prevention Associations, 
composed of 27 State-based associations of treatment and 
prevention providers in 24 States, and the Legal Action Center, 
a nonprofit law and policy firm that represents individuals in 
recovering from and struggling with alcohol and drug problems 
and AIDS.
    Thank you, Mr. Chairman, for last year's historic increases 
for Alcohol and Drug Treatment Prevention and Research programs 
and your refusal to cut funding to these services. Providing 
strong support for alcohol and drug treatment prevention and 
research is essential in maintaining and improving health and 
well-being in our Nation.
    These programs save lives and money by decreasing alcohol 
and drug use, the cost of crime, health care, AIDS, welfare 
dependence, and by increasing employment. Illinois programs 
have been leaders in developing effective alcohol and drug 
treatment programs for women, youth, and other underserved 
populations.
    For example, Lake County Health Department's Women's 
Residential Services serves women with alcohol and drug 
problems, with priority given to women with children between 
the ages of 3 to 11. These women live with their children in a 
supportive and therapeutic environment where both the women and 
the children receive treatment, prevention, intervention, and 
education services that they need to recover and lead healthy 
and productive lives.
    This program is the only program in Lake County that 
provides residential services for women with children, and it 
is one of the few programs in the State of Illinois that 
provides services for women who have children between the ages 
of 5 to 11.
    Providing alcohol and drug treatment and prevention for 
women with children preserves and improves families and reduces 
health, criminal justice, welfare, and child welfare costs.
    However, despite the success of Lake County programs and 
other programs throughout Illinois, on any given day there are 
more than 2,000 individuals that are on waiting lists in need 
of treatment services. They represent only a small portion of 
the need that exists. Last year's generous funding increases 
are being used to close the treatment gap in several key areas, 
including expansion of treatment services for individuals 
involved in the criminal justice system, services to Hispanic 
youth, expansion of methadone treatment, which is an effective 
treatment for heroin addiction.
    Maintaining last year's funding increases is essential so 
that Illinois will be able to support these important service 
expansions.
    Increased fiscal year 2000 funding, especially for the 
Substance Abuse Prevention and Treatment Block Grant and CSAT's 
targeted expansion program is necessary so that Illinois will 
be able to expand alcohol and drug treatment and prevention 
service capacity further for other underserved populations, 
including pregnant women, women with children, and youth.
    Increased funding would also permit increased service 
capacity statewide. Most of the funding increases are helping 
to expand services in the Chicago area and surrounding 
counties. In Lake County we have waiting lists for all services 
offered. For residential services, the waiting list to be 
eliminated would need an expansion of 50 percent of our 
capacity. For outpatient services, we would need a capacity 
expansion of 100 percent.
    Illinois has also been a leader in providing effective 
community-based prevention services that reduce the onset of 
alcohol and drug use among youth and other vulnerable 
populations. However, decreasing Safe and Drug Free Schools 
State Grants program funding will adversely impact many of 
these programs, including the Illinois Teen Institute and 
Operation Snowball that count on funding from this source.
    [The prepared statement of Margo Preston follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. I do have one question. Do you see multiple 
addictions when you have these young women come to stay in your 
residence facilities? Alcohol and drugs, in other words?
    Ms. Preston. We no longer serve anyone that and I don't 
mean that we reject individuals, but we never see anyone that 
has a dependence or use of only one substance any longer.
    Mr. Porter. Because there is so much demand and these are 
the ones that are in the worse shape, I take it.
    Ms. Preston. Right, because we are further down the care 
continuum. The women who approach us have lengthy substance 
abuse histories of multiple chemicals.
    Mr. Porter. There are a number of non-residential programs 
in Lake County, are there not?
    Ms. Preston. Yes, there are.
    Mr. Porter. But yours is the only residential program?
    Ms. Preston. Correct.
    Mr. Porter. You have, of course, put your finger on a very 
high priority and again we will do the best we can. Thank you 
for coming to testify.
    Ms. Preston. Thank you.
                              ----------                              

                                         Wednesday, April 14, 1999.

                             MARCH OF DIMES


                                WITNESS

JENNIFER L. HOWSE, PRESIDENT
    Mr. Porter. Dr. Jennifer Howse, President, March of Dimes. 
Nice to see you.
    Ms. Howse. Thank you, Mr. Chairman. As President of the 
March of Dimes Birth Defects Foundation, I am very pleased to 
have an opportunity to appear before you to discuss funding 
priorities for the year 2000. I also bring special greetings 
from our Chicago land chapter and I think at least 12 of our 
volunteers do live in Libertyville from that chapter.
    The March of Dimes is a national voluntary health agency 
founded in 1938 by President Roosevelt to combat polio. Today 
we have more than 3 million volunteers across the country and 
1,600 staff who support the work of our foundation. We not only 
have chapters in every State, but also a chapter here in the 
District of Columbia and the chapter in Puerto Rico.
    We are a unique partnership of scientists and clinicians 
and parents and business leaders, and our job is to work to 
improve the health of babies by preventing birth defects and 
infant mortality. We conduct four kinds of programs: research, 
community service, education, and advocacy.
    I have submitted a written statement which encompasses a 
range of recommendations. Today, I will focus in the next few 
minutes on those programs related specifically to birth defects 
research and prevention. Birth defects are the leading cause of 
infant mortality in the United States. Nearly 150,000 babies 
are born every year with birth defects. Research into the 
causes of birth defects is essential to reducing the incidence 
of these very devastating conditions, and therefore our 
foundation recommends increased funding both for the National 
Institutes of Health and for the Centers for Disease Control 
and Prevention.
    Last year the March of Dimes supported very strongly this 
subcommittee's efforts to increase funding for the NIH, and we 
note in particular your longstanding commitment to support the 
NIH and its work. This year we recommend a 15 percent increase 
in the overall budget of NIH, and we especially are interested 
in work supported by NICHD and by the National Human Genome 
Research Institute. Studies and research funded by these 
institutes have the potential to dramatically increase our 
understanding of the biological, structural, and genetic causes 
of birth defects. So we urge the subcommittee to approve 
funding increases of 161 million for NICHD and $118 million for 
the Genome Institute. In addition, we support an increase of 11 
million for the Pediatric Research Initiative in the Office of 
the Director.
    We also recommend increased funding for the Centers for 
Disease Control to implement the provisions of the Birth 
Defects Prevention Act of 1998. This initiative authorized the 
agency to provide surveillance, research, and service aimed at 
birth defects prevention.
    We are recommending a total increase of $36 million to 
enable CDC to address the birth defects research and prevention 
priorities established by Congress last year. Currently CDC 
works with State and local governments and in private 
organizations to implement the provisions of the legislation. 
It is funding eight centers for birth defects research and 
prevention, but these centers have had to limit very critical 
initiatives because they are funded at only one-half of the 
recommended level. So we are recommending an additional $8 
million to fully fund these centers.
    In addition, CDC provides technical assistance to help 
States establish or improve birth defects surveillance 
programs. Recently CDC awarded grants to 18 States. However, 36 
States applied for funding, which clearly demonstrates the need 
for additional resources, so we are recommending an additional 
$2 million so that more States can gear up to properly track 
the incidence of birth defects.
    Beyond the much needed research, we also need to work 
together to promote strategies to prevent birth defects from 
occurring in the first place. Two examples that I will very 
quickly mention today because they have been eloquently 
described by previous witnesses: One is folic acid and its role 
in preventing neural tube defects; and the other is preventing 
the occurrence of fetal alcohol syndrome.
    Every year in the United States, about 2,500 babies are 
born with these neural tube defects. They are among the most 
serious, costly and preventable birth defects that occur. The 
lifetime of care, the estimates are anywhere from 300,000 to 
500,000 and 70 percent of these could be prevented by women 
taking 400 micrograms of folic acid every day, so it is 
important to get the message out. Therefore we are recommending 
an increase of $20 million to CDC to help meet this important 
goal.
    We will also be holding a congressional briefing on April 
30 at 10:00 a.m. for congressional staff on this subject of 
folic acid and outreach and the job that we all need to do.
    The second area is fetal alcohol syndrome. This occurs with 
2,000 infants a year. It is a preventable condition. More 
treatment and programs and surveillance are needed to combat 
this terrible, terrible problem which results in very serious 
mental retardation, a lifetime and lasting condition.
    Therefore, in conclusion, we at the March of Dimes urge you 
to consider these increases in the fiscal 2000 Labor, HHS and 
Education appropriations bill. We thank you for an opportunity 
to testify and we thank you very much for your continuing 
leadership in these vital areas.
    [The prepared statement of Dr. Jennifer Howse follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. Dr. Howse, thank you very much. What year was 
it that the March of Dimes changed its mission from polio to 
birth defects?
    Ms. Howse. It was in 1958, after there was ample 
demonstration that the polio vaccine was safe and effective and 
it was time for us to focus on another critical set of 
childhood health initiatives.
    Mr. Porter. It was when I was a young man. It was a very 
important subject in our household, because my father was a 
victim of polio and walked all his life with a brace on his 
leg. And when I came back from working in the Department of 
Justice when Robert Kennedy was the Attorney General, the first 
thing I got involved with in my hometown of Evanston was to 
chair the March of Dimes campaign. So I know a little bit about 
the institution and value it very, very highly. You do 
wonderful work. We are going to try to do what you want us to 
do. Thank you for coming to testify.
    Ms. Howse. Thank you very much.
                              ----------                              

                                         Wednesday, April 14, 1999.

            NATIONAL COALITION FOR HEART AND STROKE RESEARCH


                                WITNESS

LEISL GRETZ
    Mr. Porter. Our next witness is Leisl Gretz, a volunteer 
with the National Coalition for Heart and Stroke Research.
    Ms. Gretz. Good afternoon, ladies and gentlemen. I am here 
representing the National Coalition for Heart and Stroke 
Research. The National Coalition has 15 member organizations 
that represent over 5 million volunteers or members nationally. 
My life has been seriously affected by both stroke and heart 
disease.
    In 1982 my father, at age 39, suffered his first of many 
heart attacks. The heart attack was followed by quadruple 
bypass surgery, after which we were hoping the problems would 
be over but they weren't. His problems did not end. A few years 
after surgery, he began experiencing heart fibrillations which 
caused more heart attacks. I say heart attacks because we 
don't--nobody knows for sure how many he has had. We stopped 
counting after the first six or seven. The doctors implanted a 
heart defibrillator to ease the fibrillations in his heart, and 
again the problems subsided. But in 1994 he developed an 
aneurysm in his stomach. When the doctors operated to 
obliterate it, he had more heart attacks and spent the next 3 
weeks on life support.
    After all this, the doctors discovered that his heart 
valves had become blocked and another quadruple bypass surgery 
was necessary, so he underwent his second open heart surgery 
after which his problems again seemed to be over.
    In February of 1999, he went into the hospital because of 
the pain and discomfort he was experiencing. While he was in 
the hospital, he suffered another heart attack. The doctors 
performed a catheterization to see what was the cause of the 
heart attack. The doctors learned that of the four valves in 
his heart, two are completely blocked and one is 90 percent 
blocked. So right now my father's heart is working on one valve 
and one-tenth of a valve.
    Because of the poor circulation and all the heart 
medication he must take, he is tired all the time and he gets 
worn out really easily. A simple task like walking to the end 
of the driveway would tire him out. My father has fought for 
his life many times and he is winning so far, but there are so 
many people out there who are going to lose their loved ones to 
heart disease. My father wanted to be here today but his heart 
problems have prevented that, so I came here to tell his story.
    Now, while my father was dealing with his heart problems, I 
was fighting a battle of my own. In 1983 when I was in eighth 
grade, I suffered a hemorrhagic stroke. The stroke didn't kill 
me, obviously, but when I woke up in the hospital afterwards I 
couldn't talk, couldn't walk, couldn't see straight, and the 
right side of my body was jerky, as the stroke had affected my 
motor nerve.
    The hemorrhage was caused by a congenital arteriovenous 
malformation. Brain surgery was performed about 2\1/2\ months 
after the bleed to clip off the AVM to make sure it wouldn't 
hemorrhage again. It was almost a year before I could walk and 
talk again normally. I had to teach myself to reuse my left 
hand and I had to live without supports. My vision remained to 
be a problem for me, but I persevered and managed to graduate 
with the rest of my class in 1987.
    After I graduated from high school I didn't want to go to 
college, which was my original plan, because reading and 
studying had become such difficult tasks for me. But after 
about 3 years, I realized that more education was necessary if 
I ever wanted to get anywhere. So I attended Montgomery County 
Community College. It took me 5 years to get through the first 
2 years of college, as I could only go on a part-time basis due 
to my visual problems.
    I finally graduated with my associate's degree in May of 
1997 and I was planning to continue my education at Temple in 
September of the same year. But once again, fate had other 
plans for me. As it turns out, the brain surgery that was 
performed in 1983 did not work the way it should have. The 
doctor had left a small piece of the AVM unclipped. It was not 
visible through the angiogram as the pictures angiograms 
produced in 1983 are not as clear as the ones they produce 
today. So the AVM remained growing in my head until July of 
1997 when it ruptured and caused a second hemorrhagic stroke.
    I woke up in the hospital about 2 weeks after the stroke. 
My hair had been shaved off once again. My voice was slurred 
once again, and the right side of my body was now completely 
useless. I could use it a little bit before. And to add insult 
to injury, my eyesight was even worse, and I did not think that 
was possible. I went through about 6 months of physical 
cognitive speech and occupational therapy in a rehab center at 
this time. I had no rehab the first time.
    I returned to school. I am a junior at Temple, and much of 
my life is much as it was before the hemorrhage, but lots of 
things have changed permanently. For one thing, my right side 
is completely useless now. My balance has yet to be stable. I 
have short-term memory lapses and because of these problems, I 
am unable to work; and believe it or not, I want to work. To 
look at me, no one would ever know I have had two strokes, but 
I have. That is the problem with these invisible wounds. On the 
outside I look fine, but on the inside my wounds are very real. 
I will never be the same again since the second stroke, and I 
accept that, but you are looking at somebody who thought she 
would never be so tired at age 30.
    Almost 60 million Americans have cardiovascular disease and 
almost 1 million die every year. After I had the second 
hemorrhage, I asked my mom why it happened again and she told 
me that it was my reminder, my reminder to utilize my negative 
experiences to try to create something positive. So I have come 
here today to ask for your help in combating heart disease and 
stroke. Please increase the funding. Thank you.
    [The prepared statement of Leisl Gretz follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. Ms. Gretz, obviously we are going to try to do 
that. How old is your father today?
    Ms. Gretz. Today he is 58.
    Mr. Porter. And when was his first heart attack?
    Ms. Gretz. 39.
    Mr. Porter. At age 39.
    Ms. Gretz. Yes.
    Mr. Porter. Would you say that he had had a number of risk 
factors?
    Ms. Gretz. Yes, I would say that. Heart problems run in the 
male side of my family.
    Mr. Porter. Genetic risk factors. In other words, a 
history.
    Ms. Gretz. Yes, there was.
    Mr. Porter. I am talking about the voluntary kind, smoking.
    Ms. Gretz. No.
    Mr. Porter. None of those necessarily appeared in his case?
    Ms. Gretz. No.
    Mr. Porter. Well, you are very obviously correct that heart 
disease affects millions and millions and millions of Americans 
and it is a very, very high priority for our research, and we 
are going to do everything we can to increase the funding and 
make it possible that we can overcome this. Thank you for 
coming to testify.
    Ms. Gretz. Thank you.
                              ----------                              

                                         Wednesday, April 14, 1999.

      NATIONAL COALITION FOR OSTEOPOROSIS AND RELATED BONE DISEASE


                                WITNESS

SANDRA C. RAYMOND, EXECUTIVE DIRECTOR
    Mr. Porter. Sandra C. Raymond, Executive Director, National 
Coalition for Osteoporosis and Related Bone Disease.
    Ms. Raymond.
    Ms. Raymond. Yes. Good afternoon, Chairman. I also want to 
thank you for this significant increase in NIH funding in 
fiscal year 1999. I too have summarized my testimony and will 
try to be brief. I do represent, I am the Executive Director of 
the National Osteoporosis Foundation, and I should say right 
here and now that we have a very strong representation in your 
district, Mr. Chairman.
    I am testifying here on behalf of the National Coalition 
for Osteoporosis and Related Bone Diseases. This coalition 
represents diseases that affect 30 million women, men, and 
children, diseases such as osteoporosis and Paget's disease of 
bone, osteogenesis imperfecta, and myeloma. The annual cost of 
acute and long-term care for these diseases is estimated to be 
about $20 billion. As the population ages, we project that 
these costs are going to increase to more than $60 to $80 
billion by the year 2020. Without an increased medical research 
effort today, osteoporosis and related bone diseases will drive 
up the cost of medical care and I think overwhelm any effort to 
contain health care costs.
    So, of course, we are urging you to support a 15 percent 
increase in funding for NIH, especially the six institutes that 
are responsible for bone disease research: NIAMS, NIA, NIDCR, 
NIDDK, NICHD, and NCI. We think that there are vast 
opportunities to support innovative research on osteoporosis 
and related bone diseases.
    For example, we have a recent breakthrough in bone research 
which includes the discovery that a family of molecules known 
as OPG or RANK, R-A-N-K, is critical to the formation of 
osteoclasts. These are the cells that destroy bone and this may 
lead to new ways of preventing and treating osteoporosis. 
Already in the laboratory by balancing these molecules in mice, 
researchers have been able to increase skeletal bone mass.
    We commend NIAMS, that is the lead institute for bone 
disease research, for so much of the progress that has already 
been made, but we want to point out that NIAMS received a 12.4 
percent increase in fiscal year 1999, that it is one of the 
lowest funded institutes of all of the NIH institutes, and that 
in order to achieve parity in success rates, NIAMS needs a one-
time boost. When it was born here in the Congress in 1985, you 
know, it had a very small appropriation, and even though you 
are adding every year, you are adding to a very small funding 
base.
    By the way, that is the institute that serves the lupus 
issue that was brought before you earlier in today's hearing. 
Lupus is contained in that institute. It is never going to get 
the funding it needs if NIAMS doesn't get that sort of one-time 
boost.
    So we believe that with additional funding, the institute 
could focus on many of the gaps in osteoporosis research, such 
as osteoporosis in men.Research shows that estrogen levels 
decline with age in men as well as in women, so perhaps 
osteoporosis in men may be attributable to low levels of 
estrogen, and that would lead to prevention and treatment of 
osteoporosis in men.
    Today in the U.S. we have 5 million men who have the 
disease or are at risk. Supreme Court Justice Blackman fell in 
his home, broke his hip. That was an osteoporosis hip fracture. 
So I would also like to bring to your attention a proposal by 
Congresswoman Lynn Woolsey. She is asking for provision of 
funding to the NIH Osteoporosis Resource Center for the purpose 
of educating women ages 45 to 64 about osteoporosis and the 
risk factors. It is critically important that we reach this 
group because women, when they go through menopause, lose 
almost 20 percent of their bone mass. Surprisingly, the most 
recent Hayes study found that 93 percent of estrogen-deficient 
women who were diagnosed with osteoporosis as a result of a 
bone density test didn't know anything about the disease. So we 
are urging you for that one-time boost in NIAMS funding to look 
at Congresswoman Lynn Woolsey's proposal, and the Coalition 
stands ready to serve you in any way that we can.
    [The prepared statement of Sandra Raymond follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. Thank you very much for your testimony. This is 
a very serious matter, especially as the population ages. We 
take it very seriously. We will do the best we can.
    Ms. Raymond. Thank you so much.
    Mr. Porter. Thank you.
                              ----------                              

                                         Wednesday, April 14, 1999.

              NATIONAL COUNCIL OF REHABILITATION EDUCATION


                                WITNESS

JOHN J. BENSHOFF, PH.D., MEMBER OF THE BOARD OF DIRECTORS
    Mr. Porter. Dr. John J. Benshoff, Ph.D., Member of the 
Board of Directors, National Council of Rehabilitation 
Education, from Carbondale, Illinois.
    Mr. Benshoff. From Carbondale, Illinois, about 400 miles 
from you, but still part of the great State of Illinois.
    Before I begin my testimony I would like to bring greetings 
from a faculty colleague of mine, a former colleague of yours. 
I had a chance to speak with Senator Paul Simon last week about 
coming here, and he said please convey to both Chairman Porter 
and the other members of the committee his regards. He is doing 
a wonderful job at the SIU and we are very, very proud of him 
and very, very proud of his work.
    Mr. Porter. Thank you, Dr. Benshoff. He is a favorite of 
mine as well and a longtime friend, and his wife Jean, of 
course, appears before this subcommittee in regard to library 
science. And you might be interested; his wife Jean was once a 
prosecutor, assistant prosecutor in my father's courtroom.
    Mr. Benshoff. I didn't know that, sir.
    Mr. Porter. Way before they were married.
    Mr. Benshoff. She is also a gem on our campus. It is just a 
delight to work with both of them. Wonderful people.
    I am here today representing the National Council on 
Rehabilitation Education. It is a group of hundreds of faculty 
and staff members at nearly a hundred universities. Our job is 
to train the rehabilitation counselors, the vocational 
evaluators, the job placement specialists and the other 
rehabilitation professionals whose task it is to serve 
Americans with disabilities. We are requesting that this 
committee and Congress allocate $50 million for rehabilitation 
training for fiscal year 2000.
    Let me talk about some of the challenges that we face. I 
think, Chairman Porter, our experience in Illinois, the 
diversity between where I live and you live is typical of 
disability. Disability has no boundaries. It is not an urban 
issue. It is not a city issue. It is not a suburban issue. It 
is not a rural issue. But yet there are unique challenges we 
face. When I talk to my colleagues who work in inner-city 
Chicago, they tell me their caseloads grow because of inner-
city crime. The victims of violent crime, often the innocent 
victims of violent crime find themselves disabled and find 
themselves entering a rehabilitation arena.
    In my area, rural southern Illinois, we know that rural 
communities are faced with many, many problems. Rural residents 
as a group are sicker, they are poorer, and their services are 
few and far between. Our task as rehab educators, then, is to 
prepare practitioners who can go out and work both in our big 
cities and in our rural areas.
    We also are faced with the challenges of technology. I know 
earlier today that Christopher Reeve spoke, a gentleman who has 
a severe, severe disability, and we see many people like him 
entering the rehabilitation disability community. Now, these 
are people that 15, 20 years ago would not have survived. 
Technology has allowed them to live, and now they wish to go on 
and be productive citizens. And it is the task of the students 
with whom I work to be able to provide them with the very 
needed services they must have in order to go out and function 
in the world.
    Earlier today we heard testimony about spina bifida. I just 
want to share with you a brief story. A young woman came into 
my office in her wheelchair the other day. I happen to know 
her. She is in a master's degree program in our university. She 
said, Dr. Benshoff, I really want to study to get my doctorate. 
I want to go out and teach. I want to share my experiences as a 
person with a disability, and I want to also develop the skills 
and the background I will need to do that.
    I asked her, I said, What is your disability? I don't know 
that about you. She says, I have got spina bifida. Now, as you 
heard earlier, 20, 30 years ago she would not have survived. 
This is a young woman with a bright future, a bright role as a 
rehab educator, and it is the rehabilitation education dollars 
that you fund that will support her career.
    As you know, from the very beginning we in rehabilitation 
have been dedicated to turning tax consumers into taxpayers. 
That has been our philosophy for years and years and years. And 
if you look at the data from the Rehab Services Administration, 
you see that for every dollar we spend on rehab services, there 
is an $18 returned to the Treasury. Now, that is a pretty good 
deal.
    Most individuals as Ms. Gretz just eloquently testified, 
who have disabilities want to go to work. That is an important, 
important situation. They are motivated for employment. They do 
not wish to languish at home. It is our role, our 
responsibility as Americans and as rehab educators, we believe, 
to prepare practitioners who will be able to help individuals 
like Ms. Gretz and the millions of other individuals with 
disabilities to assume their rightful place in the American 
work force. We want to carry out fully the promises made by the 
Americans With Disabilities Act.
    I had a student come to me the other day from another 
discipline. She was taking one of my classes and she said the 
thing that every professor loves to hear. ``I really liked your 
class. And I like the rehab program.'' I said, why is that? 
Because she is in a very good program in another area of the 
university. She said, because you people in rehab do two 
things. You talk about solutions, not just problems. Other 
programs talk about problems. Rehab folks talk about solutions 
and you talk about jobs. You recognize that people want to work 
and you recognize the importance of work in people's lives.
    And we have heard that eloquently expressed time and again 
today.
    Well, we have got some other challenges facing us. The need 
for qualified professionals is growing. In the 1992 
reauthorization of the Rehab Act, Congress very wisely set 
forth the requirement that the States should employ individuals 
who are appropriately trained, meaning trained at the master's 
degree level, to provide services to people with disabilities. 
In our State, for example, out of about 270 rehab counselors, 
about 75 percent will need upgraded training. That is a big 
chunk. So we within both the university systems and the state 
agency systems are busy devising ways that we can work together 
to bring that needed training to those individuals. But that 
will be expensive. These individuals are scattered across our 
States. We need to look at innovative and creative ways to 
allow us to provide that education. However, those innovative 
and creative ways don't come cheap.
    In addition, many, many of our current State rehab 
counselors are looking at retirement. We anticipate that as 
many as 50 percent of the present rehab work force will retire 
within the next 5 years. So we need to retrain a significant 
portion of the work force to replace those individuals.
    Finally, Congress in its wisdom has funded a number of 
initiatives in historically black universities and tribal 
universities and colleges and in areas of Hispanic American 
population centers to train those individuals to enter the 
rehabilitation work force. We need to continue to support those 
programs because they are very, very vital in allowing us to 
reach out to the diversity of individuals with disabilities in 
this country.
    We know through research funded by the National Institute 
of Disability and Rehabilitation Research that the best 
services, the most efficient services, the most cost-effective 
services, are offered by well-trained individuals.
    In closing, our request is that Congress allocate $50 
million for rehabilitation training for the coming fiscal year. 
We want to carry out the promises of the Americans With 
Disabilities Act, and we are confident that providing adequate 
funding for the training of qualified personnel will result in 
the highest quality of services with the lowest cost to the 
American taxpayer.
    Thank you for your support. I would be glad to listen to 
any questions you may have, sir.
    [The prepared statement of John J. Benshoff follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. Dr. Benshoff, thank you very much for your 
testimony and for coming here today. We very much appreciate it 
and we will do the very best that we can.
    Mr. Benshoff. I appreciate it. Thank you.
                              ----------                              

                                         Wednesday, April 14, 1999.

            NATIONAL COUNCIL OF STATE AGENCIES FOR THE BLIND


                                WITNESS

GARY HAUG, EXECUTIVE DIRECTOR
    Mr. Porter. Next, Gary Haug, Executive Director, New Mexico 
Commission for the Blind, representative of the National 
Council of State Agencies for the Blind.
    Mr. Haug. Mr. Porter, thank you for the opportunity to be 
here this afternoon and to speak on behalf of the public 
executives who direct services for blind people through State 
agencies under the vocational rehabilitation other programs 
authorized under the Rehabilitation Act. Good government 
invests in the productive independence of its citizenry and the 
Rehabilitation Act is the formal expression of that investment 
for persons with disabilities.
    The Rehabilitation Act resounds with faith in the abilities 
of disabled Americans. We see that faith dramatically affirmed 
in current television ads featuring a blind investment advisor 
talking not about his blindness, but about the importance of 
reliable financial advice for his company's clients.
    We see that faith in the Rehabilitation Act affirmed by the 
83-year-old woman who recently told me how much the services 
that we provide to her under the older Americans who are blind 
portions of the act have affected her life and made it possible 
for her to continue in activities that she has enjoyed 
throughout her life.
    We see that faith dramatically affirmed each and every time 
a blind person goes to work and each and every time older blind 
persons find it possible to stay in their homes, participating 
in the communities that have defined their lives.
    We rejoice in the achievements of those who benefit from 
the faith expressed by the Rehabilitation Act. At the same 
time, we struggle with the knowledge that a high proportion of 
blind and other disabled citizens are not employed. We struggle 
with the certain knowledge that all older Americans cannot 
redeem the benefits promised by the Rehabilitation Act.
    The act finances 82 State agency partners. Those 82 
partners make it possible for blind and other persons with 
disabilities to fulfill their dreams of being financial 
advisors or being successful in any of the other myriad 
occupations that are available to people in this country. But 
over 30 of those 82 State agency partners have formally 
notified the Rehabilitation Services Administration, our 
Federal administering partner, that they don't have the 
resources under the Basic Support Employment program to provide 
all necessary work preparation services to every person with a 
disability who wants to go to work.
    The Council of State Agencies for the Blind supports an 
additional investment in the Basic Support program of $700 
million to make it possible for all persons with disabilities 
to go back to work, like Ms. Gretz who just sat here andsaid, 
``I would like to go back to work and I can't work.'' Well, we would 
like to get our hands on her, okay, because she probably can work. She 
just doesn't think that yet, and these programs make it possible for 
people who think they can't go back to work because they have got 
disabilities to be able to get back into the work force in some way, 
shape, or form. We would like that chance in the Basic Support program, 
and we think additional money will help with that.
    As documented in program evaluations and countless 
testimonials, services for older individuals who become blind 
have allowed older blind Americans to live independently in 
their own homes and communities. And the program has helped 
these older individuals regain self-confidence, self-reliance, 
and self-worth by providing them with opportunities to learn 
the skills needed to perform the most basic tasks of daily 
living and to remain active in and be contributing members of 
their community. Services include a plethora of items on how to 
travel safely, communication skills, activities of daily 
living, low vision services and adaptive devices and so forth. 
The goal of these services is to reduce the need for costly 
support services such as nursing home placement based on the 
person's visual impairment.
    Two-thirds of all legally blind persons are over the age of 
55; 11.169 million, the current amount available for older 
Americans who are blind, does not begin to touch the need for 
knowledgeable, quality services for the current population, 
much less prepare for the dramatic changes in the demography of 
aging on the horizon.
    We urge you to take this opportunity, through the 
appropriations process, to expand and make possible a 
nationwide service delivery program which is adequately funded, 
delivers what it promises, and which truly makes a significant 
difference in the lives of older Americans who are blind. The 
National Council of State Agencies for the Blind supports an 
investment of $26 million to realistically begin addressing the 
potential of older Americans who are blind.
    Mr. Chairman, that concludes my remarks. I would be happy 
to answer any questions that you might have.
    [The prepared statement of Gary Haug follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. Mr. Haug, thank you very much for your 
testimony. I said this yesterday, but my wife's mother has 
retinitis pigmentosa. She is legally blind and has been for 20 
years maybe. So we are aware of the problems and the needs. 
Thank you for your testimony.
    Mr. Haug. Thank you for the opportunity.
                              ----------                              

                                         Wednesday, April 14, 1999.

             NATIONAL FOUNDATION FOR ECTODERMAL DYSPLASIAS


                                WITNESS

MARY KAYE RICHTER, EXECUTIVE DIRECTOR
    Mr. Porter. Our next witness is Mary Kaye Richter, 
Executive Director, National Foundation for Ectodermal 
Dysplasias.
    Ms. Richter. From Mascoutah, Illinois, which is not part of 
your district but certainly a part of the great State of 
Illinois.
    Mr. Porter. Absolutely.
    Ms. Richter. It is a pleasure to be here. I want to talk a 
little bit about some of the exciting things that have happened 
in the lives of the families who are affected by ectodermal 
dysplasias. The ectodermal dysplasias are genetic conditions 
that are identified by abnormalities and derivatives of the 
ectoderm. The syndromes range in their effects from mild to 
devastating. The most common syndrome is hypohidrotic 
ectodermal dysplasia which is identified by sparseness of hair, 
absence of sweat glands, and many missing teeth.
    In spite of the fact that Charles Darwin identified these 
conditions more than a century ago, progress and our 
understanding of the conditions was virtually nonexistent until 
recent years. Little was known. The prognosis was poor and 
families were left to fend for themselves.
    Our quest for better understanding of these conditions 
began with a dental implant program at the National Institute 
of Dental Research in 1986. For children with few teeth, dental 
implants ultimately become a life-changing therapy. Imagine 
beginning to wear dentures at the age of two. The dentures can 
slip and slide and easily fall out. While most children learn 
how to accommodate the wearing of the dentures, the problem 
exacerbates as the wearing of dentures leads to further 
deterioration of the jawbone.
    It was through the implant project at the NIDCR that we 
learned that not only did dental implants work, they worked 
extremely well.
    More recently, another critically important project was 
undertaken by the NIDCR which determined the identification of 
the gene responsible for hypohidrotic ectodermal dysplasia. 
Through work at the University of Oregon, Washington University 
in St. Louis, and the University of Helsinki in Finland the 
gene has been identified. The identification of the gene means 
that women who may be at risk for carrying the gene can receive 
determination of that fact.
    For years I have wondered if our daughter carried a copy of 
the gene that has affected her younger brother. I feared that 
what my chromosomes had done to my son may also have affected 
her. I worried she would be at risk for passing on a gene to 
her children which would forever impact their lives in very 
challenging ways.
    DNA samples from each member of our family were sent 
toPortland where they were analyzed to determine what the status of our 
daughter might be. Two weeks ago I received a call which indicated that 
my two sons had both inherited the same X chromosome from me and that 
my daughter had inherited the other. The tests verified that my 
affected son was a new mutation and not at all the recipient of an 
unwanted genetic gift from me. And now my daughter can approach her 
wedding in November without fear of passing on this particular birth 
defect to her children.
    From the bottom of my heart I want to thank you for the 
funding that made this test possible and for the joy this good 
news has brought to our family.
    The unfortunate thing is that this is only one kind of ED 
and there are at least 150 others. So, given the expanding role 
of the Dental Institute, we concur with groups like the 
American Association of Dental Research and the American 
Association for Dental Schools who have requested a 15 percent 
increase in funding for the NIH, including the NIDCR, bringing 
that institution's funding level to $276.5 million.
    We are also looking to researchers at the National 
Institute for Arthritis, Musculoskeletal, and Skin Diseases to 
unlock the mysteries of non-functioning sweat glands, hair 
follicles, and poorly developed nails. Making certain that 
NIAMS has sufficient funding to reach its goals is the first 
step in that process. We are in total agreement with other 
agencies that have testified on behalf of NIAMS that a 15 
percent increase in that institution's funding to a level of 
$354 million is critical.
    Of equal concern is funding for the Office of Rare Disease 
Research. Finding resolution for problems associated with rare 
conditions is extremely difficult, often futile, and frequently 
life-threatening. How much better it would be for all patients 
affected by rare conditions, and their physicians, to have a 
single repository for rare disease information, including that 
on treatment, prognosis and research.
    Another program of great interest to us is the General 
Dentistry and Pediatric Dentistry Residencies. Our families 
depend on access to well-trained dentists who can meet the 
unique challenges presented by toothless children. Well-trained 
dentists are key to treatment success.
    What is so extraordinary about the general dentistry 
residency training program is that 87 percent of those dentists 
enrolled remain in private primary care practice. Pediatric 
dentistry training programs have not expanded in the last 20 
years despite increased societal needs.
    Consequently, I ask that the subcommittee appropriate $8 
million in funding for the General and Pediatric Dentistry 
programs. I believe strongly that the scientific community 
housed within each institute should be the ultimate authorities 
on the spending of tax dollars for medical research. I ask for 
your thoughtful consideration of funding for the NIDCR of 
$276.5 million, $354 for the NIAMS, $8 million for the General 
and Pediatric Dental Residencies Program, and $25 million for 
the Office of Rare Disease Research.
    There are no possible words for me to say thank you. You 
have given our family the most priceless of all gifts. And we 
will be forever grateful. Thank you.
    [The prepared statement of Mary Kaye Richter follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. Ms. Richter, how old is your son?
    Ms. Richter. Our youngest son because we have two sonsour 
youngest son who is affected by ED is going to be 21 two weeks 
from today. He is a junior at Southern Illinois University at 
Carbondale.
    Mr. Porter. Is there evidence the other direction in the 
genetic chain ancestry?
    Ms. Richter. No, not for our family. But there was no way 
to know what the future for us was, because genes can hide for 
generations in families and then just happen, and so there was 
no way for us to know. And as a director of the organization, I 
tell mothers all the time, there is no need for you to feel 
guilty about this thing because you can't control the genes 
that you pass on.
    Mr. Porter. No, of course not.
    Ms. Richter. But I don't know a mother who doesn't.
    Mr. Porter. I suppose, but they shouldn't. Thank you very 
much for your testimony.
    Ms. Richter. Thank you.
                              ----------                              

                                         Wednesday, April 14, 1999.

                     NATIONAL JOB CORPS ASSOCIATION


                               WITNESSES

DICK SCHUBERT, VICE CHAIRMAN, DRUCKER FOUNDATION DIXIE AXLEY, VICE 
    PRESIDENT, STATE FARM INSURANCE
    Mr. Porter. Dick Schubert, Vice Chairman, Drucker 
Foundation and Dixie Axley, Vice President of State Farm 
Insurance, testifying on behalf of the National Job Corps 
Association.
    Mr. Schubert. Thank you, Mr. Chairman. I couldn't help but 
think of the responsibility you have, the empathy that I have 
for you here in these many dramatic needs for support. We will 
be brief and I hope concise. I am here as Chairman of the Board 
of National Job Corps Association and my colleague, Dixie, is 
going to start the presentation and then I am going to pick up, 
and then we are going to finish and do it within the time 
limits provided. I should note, however, Dr. Benshoff mentioned 
Paul Simon, and he is also on our Board and sends his greetings 
to you.
    Dixie?
    Ms. Axley. The National Job Corps Association is comprised 
of organizations that operate Job Corps centers or 
organizations that support the concept and the reality of the 
Job Corps. I am proud to work for State Farm Insurance and also 
proud to serve on the Board of the National Job corps 
Association. I support Job Corps, but especially in this tight 
labor market, I find additional reasons to support and 
encourage their work. Whether you are the mom-and-pop corner 
grocery store or State Farm Insurance, selling more auto 
insurance and homeowners insurance than anybody in the world, 
every business has struggled with the costs of staff 
recruitment, training, and the very high cost that turnover 
brings us.
    Employers know that Job Corps is a valuable investment 
because it prepares students to succeed at work. Job Corps does 
teach trades but, more important, it teaches crucial 
employability skills: how to keep a job, how to show up every 
day on time every day.
    Mr. Schubert. Mr. Chairman, we are here to discuss four 
serious issues that we believe undermine our $1.3 billion 
national investment in training, almost 70,000 youth in more 
than 100 Job Corps centers each year. The first, and I believe 
the most critical issue, is grossly inadequate salaries for the 
staff of those who help Job Corps center students to succeed. 
As you know, and you have been a supporter of Job Corps since 
you have been in the Congress, Job Corps aims to place its 
students in jobs earning $8 or more per hour. It is important 
that you recognize, Mr. Chairman, that many of the staff 
members of Job Corps centers don't make $8 an hour themselves, 
so I suggest you consider this scenario. You are a vocational 
instructor. Can you choose to work year round at Job Corps with 
at-risk youth and all the challenges that that attends? If the 
organization that hires you fails to meet ever-increasing Job 
Corps performance standards, it will lose its contract and you 
probably will lose your job. Or you can work at the local 
school. You will be paid more. You will work 9 months a year. 
Job security and benefits are virtually guaranteed. Tough, 
tough choice.
    Low wages have contributed to turnover as high as 50 
percent in some Job Corps centers. Staff are leaving Job Corps 
centers because they simply can't afford to support their 
families on the wages they receive. As many as 10 percent of 
some job positions across the centers are unfilled, because 
nobody meets the minimal qualifications that the salaries 
offer. Job Corps itself has an interesting anomaly with regard 
to pay. As you know, 28 centers are operated by GS scale 
Federal employees. They are operated by Federal agencies. A 
vocational instructor at a Federal center earns 24 percent more 
than the private sector contract center counterpart. So it is 
not surprising that the vocational instructor turnover at 
contract centers is 17 percent, almost four times as much as it 
is in a Federal run agency. Dixie has described the cost of 
turnover to business, but the cost is measured in more than 
dollars, it is measured in not changed lives. That after all is 
the objective and the mission of the Job Corps program, to 
change lives.
    Youth come to residential centers to leave unstable 
neighborhoods and turn their lives around. Stability and 
mentoring are crucial to their success, but all of that is 
undermined by the escalating costs and the de-escalating 
salaries and compared to those costs. The President's budget 
provides a $6 million raise for academic teachers only.
    We desperately need another $21 million to raise 
uncompetitive salaries for equally vital staff and other 
positions. These two funds, this request and three others that 
Dixie is going to mention, were cut from the budget despite 
what we know was a strong appeal by the Secretary of Labor.
    Ms. Axley. Let me turn to the second issue now, the issue 
of business involvement, Job Corps celebrates its 35th birthday 
this year. And we were surprised but pleased for the first time 
in that history Congress is requiring each center to establish 
a business and a community liaison. This person will be the 
connection to the Job Corps that the people in the business 
community have wanted and needed for a long time. Regrettably 
it is an unfunded mandate in the President's budget.
    I ask the committee to provide $15 million for this new 
position. It is a comparatively small price tag to assure a 
$1.3 billion job training program captures vitally needed 
employer input.
    Our third request deals with the student follow-up and 
support aspects of our program. Employers want to hire people 
who will succeed in and stay in their jobs. That is why 
Congress has almost quadrupled the period of time during which 
Job Corps must support former students and help them adjust to 
the workplace. They provide follow-up, case management, 
transportation assistance, and other services for a full year.
    This is a wise investment in making sure that Job Corps 
students find and keep good jobs. But the President's budget 
provides only $4.50 per student per week for the placement, 
counseling and support that helps those students stay employed. 
Job Corps' placement staff already work with 115 or more 
students each. If their caseloads increase, students simply 
won't get the case management that helps them succeed at work 
and stay in their jobs.
    An additional $12 million, less than 1 percent of the 
program's total budget, seems a small price to help students 
stay in their jobs and use the training that we have as 
taxpayers have invested so much to give them.
    Mr. Chairman, the fourth request I cannot present in detail 
today. I know you are aware of the problems that lack of child 
care poses for some of our Job Corps students and our proposal 
to build Head Start programs at some of our Job Corps centers. 
That is a request that is detailed more fully in our written 
testimony.
    Mr. Chairman, I know that you know that the contractors who 
run Job Corps centers are businessmen and businesswomen. They 
recognize the budget constraints you are facing, and asbusiness 
owners they also understand that productivity and efficiency 
improvements can only go so far, and at some point any business that 
takes on new responsibilities and new objectives must have the 
resources to achieve them.
    Mr. Schubert. Mr. Chairman, Job Corps has a 35-year record, 
we believe, of proven success. It is the only Federal program 
that reaches down to the most disadvantaged, does not cream and 
gives these young people a shot and a chance. But it can meet 
the standards Congress has established in the new legislation, 
which I think is appropriate legislation authorized by the 
Congress, without your help.
    On behalf of the association, we urge you to consider these 
requests. Thank you, sir.
    Mr. Porter. Well, we are and have always been great fans of 
the program. We think it helps those most in need of the help 
and takes people out of environments where success is perhaps 
impossible in most cases and brings them to the place where it 
is very possible and often is the result. I don't want you to 
spend a lot of time paying attention to the President's budget.
    The President I am afraid drew a very cynical document and, 
in fact, if you look at all the things that Congress has put at 
a high priority, he has put them at a very low priority. That 
permits because and he said this to me directly, he said, oh, 
we know you are going to take care of that. That is not the way 
to draw an honest budget. He should work with us instead of at 
cross purposes and, of course, that allows him to raise other 
accounts and in effect send a fine political message to other 
interests.
    We don't think that is the way of the budget and we don't 
pay any attention to the President's budget very frankly in 
many respects. So don't worry about that. We value Job Corps 
very highly, and we are going to do our best to provide the 
resources that you believe are needed.
    Thank you very much for coming.
    Mr. Schubert. Thank you.
    Ms. Axley. Thank you.
    [The prepared statement of Dick Schubert follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

                                         Wednesday, April 14, 1999.

            NATIONAL ASSOCIATION OF COMMUNITY HEALTH CENTERS


                                WITNESS

DALE GALASSIE, EXECUTIVE DIRECTOR OF THE LAKE COUNTY HEALTH DEPARTMENT 
    AND COMMUNITY HEALTH CENTER
    Mr. Porter. Finally last and not least, Dale Galassie, 
Executive Director of the Lake County Health Department and 
Community Health Center, testifying on behalf of the National 
Association of Community Health Centers. Dale, it is good to 
see you.
    Mr. Gallagher. You too, Mr. Chairman.
    Mr. Porter. You have been very patient.
    Mr. Galassie. We have been, and it is always our pleasure 
to be. And I think in deference to understanding your 
commitment and support of community health centers, actually, I 
am going to defer a formal reading of what we have submitted in 
recognition of the lateness of the hour, and tell a quick story 
if I may.
    As you may recall, the Lake County Health Department 
Community Health Center has been providing primary care for 30 
years. We provide about 74,000 visits to about 12,000 patients, 
now that we are an FQHC, federally qualified health center. We 
became an FQHC in 1995, and you have visited our facility on 
more than one occasion. I can tell you having been in this 
position with the Health Department and now Community Health 
Center for now 17 years, the FQHC status has made us a much 
more comprehensive provider.
    The services we deliver now to the communities that you 
very much are aware of in your districts receive very 
comprehensive care as a result of the full-time providers, 
relationships we have with the hospitals. I am, as you 
mentioned, representing the National Association of Community 
Health Centers, who are asking for your support for a $100 
million increase in fiscal year 2000.
    The health centers have seen about a 1 million increase in 
uninsured in the last 3 years; that 100 million individuals is 
not decreasing, as you know. In Lake County, we estimate we 
have about 70,000 uninsured, and we have about 26,000 Medicaid. 
The Health Department and Community Health Center are clearly 
the largest providers serving that population today. Last year 
alone, we saw an increase of about 19 percent in Lake County in 
the uninsured population that we are serving.
    We provide about $4 million of local taxes to primary care 
in Lake County, as you are aware. I think the most significant 
problem facing us, in addition to requesting the $100 million 
increase, is the problem as compounded by the phaseout of the 
reimbursement of reasonable costs. That is our primary concern 
and certainly my primary concern.
    If the phaseout is not reversed or amended in some way, 
shape or form, in the next 5 years, Lake County will lose 
almost $2\1/2\ million in funding. That equates to about 8,000 
persons being served. That reduction nationally is about $50 
million a year, I am sorry, 50 million in the first year, and 
it equates to about $500 million by about 2004.
    Only having been in the FQHC business for 4 or 5 years, I 
just don't understand how this system, this provider network is 
going to be able to survive that type of reductions. We greatly 
appreciate your support and the committee's support in 
increasing last year $100 million to the appropriation; 
regretfully the needs continue to arise.
    I think we have a very efficient and effective and 
accountable delivery system at the local level. I ask you to 
consider supporting the $100 million increase in fiscal year 
2000 and in some sort of an amendment or an amendment or a 
reversal of the phaseout of the reimbursement of reasonable 
costs.
    Again, I thank you for this opportunity, and I appreciate 
the support we have seen so far.
    Mr. Porter. Dale, thank you for your testimony. We are 
going to do the best we can to address the issues that you have 
raised. I don't believe that I have authority to address the 
one though.
    Mr. Galassie. No. That is correct.
    Mr. Porter. I think that is an authorizing matter, is it 
not?
    Mr. Galassie. It is an authorizing matter.
    Mr. Porter. Yes. And as I said, I don't know whether you 
were here then, but we are avoiding as much as we possibly can 
doing anything in the authorizing area and insisting that the 
authorizers do their work to address these problems. So I don't 
think we are going to be able to help with that. But we will do 
our best to provide the additional funding.
    Mr. Galassie. The association is working diligently in that 
regard as well. Again we appreciate your support.
    Mr. Porter. Thank you, Dale. It is good to see you.
    Mr. Galassie. Thank you. You, too.
    Mr. Porter. The subcommittee stands in recess until 10:00 
a.m. tomorrow.
    [The prepared statement of Dale Galassie follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

                                          Thursday, April 15, 1999.

                        SPINAL MUSCULAR ATROPHY

                               WITNESSES

KIMBERLY SYMONDS
GARETT LEWIS
J.J. WETT
    Mr. Miller [assuming chair]. Good morning. The hearing 
before the Subcommittee on Labor/HHS Appropriations will come 
to order.
    We welcome all the people participating this morning. We 
have a fairly tight time constraint. I think everybody knows 
about the five minute rule and it really is just as courtesy 
for the other people coming after you. We have to apologize for 
the fact that we only have five minutes, but with the numbers 
of witnesses we want to have, that is the only way we can work 
it. So we really do need to enforce the rule to five minutes. 
You will hear a little timer bell go off, so when you hear that 
please try and conclude. We want to try to keep as close to the 
schedule today as possible.
    We shall begin with the first witness, which is Kimberly 
Symonds, and also Garett Lewis, and J.J. Wett. Is that 
everybody? I will let you introduce yourselves again. Good 
morning, and please proceed.
    Mr. Lewis. Good morning. Mr. Chairman, members of the 
subcommittee, guests, my name is Garett Lewis. I am 16 and I 
have spinal muscular atrophy. The following is a poem that I 
wrote in the seventh grade:
    ``Dreams. My dream is to walk, to be able to play hockey on 
two legs, to shoot a jump shot, to run through a field, to be 
able to adapt to others rather than them adapt to me. Just to 
be able to keep up with mankind. I would give anything to walk. 
But I believe that one day my dream will come true.''
    Now that I am in high school and am a sophomore, I have had 
to face the truth that my dream to walk will never come true; 
even though sometimes the truth can hurt. I have learned to 
deal with my disease. But it is a long road filled with many 
obstacles, many of which I have barely dodged. Getting into 
friends' houses, aisles in mall stores, and also learning how 
to drive a vehicle are just a few. I believe that the children 
behind me should never have to endure such hardships, because 
oftentimes these obstacles can be almost too much to bear.
    I know that the research in spinal muscular atrophy is 
advancing rapidly and that some day there may be a treatment or 
a cure. Government support is the key. I ask you deeply to 
consider financial aid to research this devastating disease. 
Thank you.
    Ms. Symonds. Mr. Chairman, members of the subcommittee, 
guests, my name is Kimberly Symonds. I have submitted written 
testimony for the record.
    On May 10, 1994, my daughter Nicole was born, to all 
appearances healthy. A perfect baby. At two months, however, 
she was not progressing physically. She could not hold up her 
head or reach for toys. She seemed to be floppy. The doctor's 
diagnosis was devastating. She was going to die before she 
turned two from something called spinal muscular atrophy, SMA.
    Like you, we had never heard of SMA. Nicole Elizabeth 
Symonds died on May 15, 1995, age twelve months, five days. At 
her funeral, my husband eulogized his first child, ``I'm sorry, 
Nicki, daddy can't fix this one for you.'' And daddies are 
supposed to be able to fix everything. You see, there is no 
cure for SMA.
    Our son Joshua was born on July 18, 1996. At birth he also 
appeared healthy. But at three weeks he began to deteriorate in 
an all too familiar way. The disease progressed rapidly through 
his tiny body, and Joshua Michael Symonds died from spinal 
muscular atrophy on February 18, 1997, age seven months.
    Currently, one out of every two babies with SMA will die by 
the age of two. It is the number one genetic killer of children 
this age. An alarming one in forty individuals is a carrier, 
and one in six thousand live births is affected.
    Researchers are narrowing in on effective treatments and a 
cure for SMA. But lack of funding that jeopardizes the research 
that can help families like mine, teens like Garett and J.J., 
and more than twenty-five thousand others. Foundations like 
Families of SMA are doing what they can to support research on 
SMA. But more attention is needed. Simply put, there needs to 
be more government support for SMA research.
    We know you have very tight budget constraints. We also 
know that NIH is a high priority. Your 15 percent increase last 
year was very generous. Since scientific opportunities at NINDS 
have never been greater, we urge you to continue this trend, 
doubling the NIH funding over five years and appropriating 
another 15 percent increase this year. Please continue to help 
NINDS fund this life-saving work. Thank you.
    Mr. Wett. Mr. Chairman, members of the subcommittee, 
guests, my name is J.J. Wett. I have SMA. I can only breath 
with the help of a ventilator. I sit before you as a perfect 
example of what modern technology and medicine can do. But it 
is not enough. In my lifetime I would like to be able to breath 
on my own without machines.
    I know that you are the ones that put more money into 
research. So if any cure can be found, then my dream of 
breathing on my own can come true. Please help us. Thank you 
for this opportunity to speak.
    [The prepared testimonies of Kimberly Symonds, Garett 
Lewis, and J.J. Wett follow:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Miller. Thank you. That is very powerful testimony.
    Where are you all from? Are you from Illinois?
    Ms. Symonds. I am from Ohio.
    Mr. Lewis. I am from Chicago.
    Mr. Miller. Chicago.
    Mr. Wett. Chicago.
    Mr. Miller. Chicago. Is that Libertyville?
    Mr. Lewis. Yes.
    Mr. Miller. Okay. That is Mr. Porter's district.
    Mr. Lewis. Yes.
    Mr. Miller. He is the chairman here and I am substituting 
for him. I am sorry he is not here with us today. He is 
unavoidably absent. But you have a very fine person 
representing you. Have you met Mr. Porter?
    Mr. Lewis. No.
    Mr. Miller. I will personally be discussing with him that 
his constituents were here today. I wish you the best of luck. 
You really give a very powerful message. Thank you.
                              ----------                              

                                          Thursday, April 15, 1999.

                          BRITTLE BONE DISEASE


                               WITNESSES

JOSEPH H. YASTROW, MEMBER, BOARD OF DIRECTORS, CHILDREN'S BRITTLE BONE 
    FOUNDATION
ASHLEY GLICKEN
    Mr. Miller. We have next Mr. Joseph Yastrow, member of the 
board of directors, with Ashley Glicken, Children's Brittle 
Bone Foundation.
    Mr. Yastrow. Good morning.
    Mr. Miller. Good morning.
    Mr. Yastrow. I have the pleasure of introducing our primary 
spokesperson Ashley Glicken, who will tell you first-hand about 
her experiences as a sufferer of osteogenesis imperfecta, 
commonly referred to as OI or brittle bone disease. I am sure 
you will immediately recognize why Congress specifically urged 
the National Institutes of Health to support more research on 
brittle bone disease out of its 1999 fiscal year appropriation.
    In July 1987, those of us who eventually formed the 
Children's Brittle Bone Foundation had never even heard of 
brittle bone disease. But when Ashley was born that month to 
our close friends Carrie and Chris Glicken we quickly learned 
what it was. We also learned that in spite of the fact that 
approximately 30,000 children and young adults are afflicted 
with this disease, there is no cure, the disease is not well-
known, and funding for research directed toward discovering a 
cure is woefully inadequate.
    Accordingly, in 1991 we established the Children's Brittle 
Bone Foundation to support research designed to find an 
eventual cure for OI. Since that time we have become the 
Nation's largest private source of funding for research, with 
$1.2 million currently committed to support various research 
fellowships. Based on the available information, our small 
group of friends is currently keeping pace with OI funding from 
the Government. This is discouraging particularly when you 
realize that there are thousands of kids out there just like 
Ashley and hundreds more being born every day.
    This would seem to be reason enough to justify increased 
funding. But there are other scientific and practical 
considerations which provide additional support for our 
position. Our medical board representatives tell me that our OI 
research provides an ideal model for curing other autosomal 
diseases which also involve defects and damaged genes. 
Therefore, increased funding for OI research could lead to 
advancements and cures for such diseases as well.
    And now let's hear from Ashley.
    Ms. Glicken. Hi. My name is Ashley Glicken. I am eleven 
years old. My family and I found out that I had OI when I was 
born with a broken leg. My doctors did not know at first and we 
think that my femur, the biggest of the leg bones, was 
displaced or came apart when the nurses were cleaning me up; I 
cried a lot.
    My parents were frightened when they heard about this 
mysterious disease. I spent the first three weeks of my life in 
traction. I have cried a lot since then.
    During the past eleven years, I have broken my bones 
twenty-three times. It is painful when the break occurs and is 
still really painful for about two weeks until the bone gets 
set. I am usually in a cast for at least six weeks. This cast 
starts at my truss and goes down to my toes, making me into a 
wooden board. Going to the bathroom and getting dressed is 
difficult, but it is also painful because I have to stay at 
home and cannot move around a lot. My freedom is lost for a 
time.
    I miss my friends at school. I miss out on classroom work. 
And even though when I do not have a break, this condition 
keeps me from a lot of things I would just love to do. I only 
rode a tricycle for one summer. I am no longer able to play 
sports, dance, or do many other things I would love to do. I 
have never played outside my backyard without having a mom or 
dad or helper watching over me. My mom has to go to every 
birthday party I am invited to. At school I am followed 
everywhere by an aide. This does make me feel more safe but it 
also gets in my way. It is hard for me to socialize like other 
eleven year-olds; someone is always listening and some of my 
friends stay away.
    I guess that I am lucky because I did walk until three 
years ago. Some OI kids never walk. Some have a lot more 
crooked bones and are a lot shorter than I am. Some have to be 
in specially rigged wheelchairs because they have so many 
problems. Some have hundreds of breaks. Some die. This is a 
painful condition both in body and in spirit.
    I am a normal kid in all other ways. I love to read, write 
poetry, swim, act, gossip, and work on the computer. I have a 
lot of hopes and dreams for my future but I am sad a lot 
because I am different. It is especially hard for kids in 
junior high to see past my disability. I really want a cure for 
osteogenesis imperfecta so that I can do the things I dream 
about. I don't like living with the constant fear of how one 
second I can be healthy and the next be stuck in a cast, filled 
with pain and disappointment.
    People who don't have a problem don't always understand. 
Many take for granted the ability to walk and play freely 
without fear. Since I was three, every time I blow out my 
birthday candles or when I see the first star of the night I 
wish for the same thing. Can you guess? A cure for OI is the 
most important thing to me. Now I am eleven and I am starting 
to lose hope. I hope you will provide more money for OI 
research. We need your help.
    [The prepared testimony of Joseph H. Yastrow and Ashley 
Glicken, follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Miller. Thank you. You are a very articulate young 
lady. You did a very fine job there.
    Ms. Glicken. Thank you.
    Mr. Miller. How do you keep up with school? Do you do a lot 
of home schooling?
    Ms. Glicken. I have had home schooling. When I first got 
into school I had a tutor. For Hebrew school I have had to have 
tutoring.
    Mr. Miller. So you have been able to keep up for your grade 
level?
    Ms. Glicken. Pretty much. It is a little slow though.
    Mr. Miller. Now, in ten years, will it be getting any 
better ten years from today?
    Ms. Glicken. Probably it would get better because 
supposedly it gets better as you grow up. But you never know.
    Mr. Miller. Where do you live?
    Ms. Glicken. Chicago.
    Mr. Miller. Chicago. Are you in Mr. Porter's district also?
    Ms. Glicken. Yes.
    Mr. Miller. Mr. Porter is going to get a lot of problems 
that he is not here this morning. [Laughter.]
    I am from Florida. Sarasota, Florida is my district. Some 
of you all come down and visit our area in the wintertime, not 
in the summer, in the winter.
    Thank you very much for coming. We appreciate it very much.
                              ----------                              

                                          Thursday, April 15, 1999.

                           MUSCULAR DYSTROPHY


                                WITNESS

PATRICIA A. FURLONG, PRESIDENT AND FOUNDER, THE PARENT PROJECT FOR 
    MUSCULAR DYSTROPHY
    Mr. Miller. Next, we have Patricia Furlong, president and 
founder of The Parent Project for Muscular Dystrophy.
    Good morning.
    Ms. Furlong. Good morning, Mr. Chairman, distinguished 
members of this subcommittee. I am honored to be here this 
morning and thankful for this opportunity. Today we come to 
speak about Duchenne muscular dystrophy. I speak on behalf of 
The Parent Project for Muscular Dystrophy Research, a nonprofit 
organization of parents, grandparents, friends, relatives of 
children who have Duchenne muscular dystrophy.
    You might not have ever heard about Duchenne muscular 
dystrophy. When my sons were diagnosed in 1984 I too did not 
recall the name Duchenne. Rather, I remembered a comprehensive 
group of diseases referred to commonly as the muscular 
dystrophies, and in that I recalled children sitting on 
telethons, sitting in wheelchairs unable to walk. And at that 
moment, in my mind, I said, ``Okay, if the only thing that I 
have to deal with is this child won't walk, I can deal with 
that.''
    The problem compounded itself. My son Christopher was 
diagnosed in 1984. On that same day, my son Patrick was 
diagnosed. On that same day, my daughter Michelle was diagnosed 
a carrier. The first question I was asked, ``Where is your 
family history?'' I have no family history of this disease. 
Rather, it appears that my father mutated his sperm, which is a 
common occurrence, and created me, unknowing, a carrier of 
Duchenne.
    Let me explain the course of Duchenne muscular dystrophy. 
It is a progressive muscle disorder. When I visited with the 
neurologist he said to me, ``There is no hope and no help. Your 
son will die before he is twenty, your other son will die 
before he is twenty, and you have nothing to look forward to.'' 
In fact, that was true.
    At the age of eight, my son Christopher lost the ability to 
walk. At that same age, give or take a few months, my son 
Patrick followed. They progressed to lose all motor function. 
Christopher could not move his arms at the age of ten, he could 
not move his fingers at the age of fourteen, and at the age of 
seventeen, on September 29, 1995, we made a medical decision to 
turn off the respirator because he had been given an inhalation 
anesthesia in the emergency room due to a pneumonia that 
compromised his condition and created riabdomialysis and 
eventually led to his death.
    There are in this condition certain anesthesias that are 
contra indicated. Unfortunately, no one knows the name Duchenne 
so very rarely is it known in an emergency situation and often 
our children die due to other circumstances in addition to 
muscular dystrophy.
    My son Patrick, at age fifteen, seven months to the day 
later, and the hour, said to us, ``I love you but I can't go 
on,'' and died.
    These are two children in two families. This story is 
repeated often and consistently since the beginning of time. I 
would like to say to you, Mr. Chairman, that this has changed 
and that fourteen years ago these children died at twenty. 
Rather the condition is the same, the progression is the same, 
and death is at twenty. We have made no progress in terms of 
what we can do for these children, and no progress in extending 
their mobility or their lives in the last fifty or one hundred 
years.
    One in three thousand, five hundred male births is affected 
by this disease. All men have the potential to be carriers of 
the disease in that one in every ten thousand sperm has the 
gene mutated as a new event. This gene is the largest gene 
identified to date, ten times larger than the next largest 
gene. It was the first identified gene. This disease is a 
paradigm for so many other diseases. Treating Duchenne will 
treat a host of other diseases.
    I personally believe that children should not be ill, not 
for any reason. I feel that this country has the opportunity 
technologically, scientifically, and medically to change the 
course of lives of children--my children, other children. I 
would like us to break this circle, and I think we have two 
very big circles going on. One is that we have made no progress 
in Duchenne in terms of extending the mobility and the life, 
and, two, is the circle that NIH does not have a study section 
to review muscle. Muscle is 30 percent of our bodies. It is a 
critical mass. They have study sections in AIDS, they have 
study sections in all other areas, but not muscle. It is a 
critical problem for those of us, myself included, who are 
aging, for our space travel, and then for our children.
    I respectfully request today that you listen to the parents 
of our project. Our project is unique in that we parents have 
incorporated very fine scientists and medical experts into our 
project so that we, together, can create a critical mass to 
change this picture. Unfortunately, we cannot do it alone. We 
need your help. And we would like to come to you at some point 
and say we are willing to create a critical mass in another 
disorder.
    I ask your kindness for these children.
    I have with me today Dr. Thomas Rando from Stanford, Dr. 
Jim Tidbal from UCLA, and Dr. John Huard from University of 
Pittsburgh. These are leading investigators in Duchenne. These 
are people that work directly with us, that guide us to move 
forward to help our children. Thank you.
    [The prepared testimony of Patricia A. Furlong follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Miller. There are different types of muscular 
dystrophy; is that correct?
    Ms. Furlong. Yes, sir.
    Mr. Miller. What I am just finding out. How many different 
types are there? Duchenne is one type.
    Dr. Rando. Duchenne is one type. There are many, many 
types. Duchenne is by far the most common. It is the most 
common world-wide and in this country, leaps and bounds above 
the others.
    Mr. Miller. And this is genetic?
    Dr. Rando. It is a genetic disease in that it is passed on 
from carriers to their children in about 60 percent of the 
cases. But in about 40 percent of the cases it is sporadic. So 
even though it is hereditary in most cases, it occurs 
spontaneously and therefore even full genetic counselling will 
never eliminate this disease. It will continue to occur 
spontaneously in the population we think forever.
    Mr. Miller. How far have you come in research in the past 
decade?
    Dr. Rando. Well, that has been the struggle. About fourteen 
years ago, the gene for Duchenne dystrophy was identified. It 
was the first gene identified by the current method of disease 
gene identification that is now used essentially universally. 
So it was a paradigm in terms of gene identification. That was 
a critical point. But since identification of the gene, we 
still have made very little, almost no progress in terms of 
therapeutics. And that is what our goal is to do, is to 
translate our understanding of the biology and the genetics 
into therapeutic advances in this disease.
    Mr. Miller. Are any of you all doing any NIH work today?
    Dr. Rando. We all are doing NIH work. We have struggled to 
get NIH funding for therapeutic advances, and that is what our 
goal is to try and do is to increase the NIH awareness of the 
importance of translating basic biology into therapeutic 
studies.
    Mr. Miller. Thank you.
    Mr. Cunningham, did you want to ask any question?
    Mr. Cunningham. No questions.
    Mr. Miller. I apologize to everybody for having to live 
with the five-minute rule, but I do appreciate your testimony. 
Again, it was a very powerful testimony delivered to help us 
understand. One of the best things you all can do is help make 
the American people aware that the NIH is a great institution. 
It really is a powerful institution that I don't think most 
Americans even realize exists, and that is something that you 
can help promote, too. And we will do the best we can for NIH. 
Thank you.
    Ms. Furlong. Thank you.
                              ----------                              

                                          Thursday, April 15, 1999.

               JOINT STEERING COMMITTEE FOR PUBLIC POLICY


                                WITNESS

DR. SUSAN TAYLOR, MEMBER OF THE EXECUTIVE COMMITTEE, JOINT STEERING 
    COMMITTEE FOR PUBLIC POLICY
    Mr. Miller. Our next witness is Dr. Susan Taylor, and I 
think Mr. Cunningham would like to make the introduction at 
this time.
    Mr. Cunningham. Thank you, Mr. Chairman. Mr. Chairman, I 
apologize for being late and I am going to have to leave after 
this witness. Being on the Defense Committee, I am tied up with 
Kosovo which is a major problem that we are going through right 
now.
    I would like to introduce Dr. Susan Taylor. Even though she 
is here on April 15, tax day, she is not from the IRS. Dr. 
Taylor is a professor of chemistry and biochemistry at UCSD, 
University of California, San Diego. I would like the doctor to 
know that my seventeen year-old daughter has been doing genetic 
gene-splicing since she was a freshman with Dr. Goldstein at 
UCSD, so it is very close to home.
    Dr. Taylor is joining us today wearing one of her many hats 
as a member of the executive committee of Joint Steering 
Committee for Public Policy. In this role, she effectively 
advocates for increase in our national investments in health 
research. We have talked to Dr. Taylor and her real concern is 
that with the budget we will not have enough money to expand 
the medical research that all of us really want.
    I would also tell the doctor that right now that they are 
broadcasting in Kosovo that it is going to cost $4 billion. We 
are flying 82 percent of the sorties there and before it is all 
over it is going to cost us $10 billion. Every bit of this is 
coming out of the surplus that we want to add to the money, so 
a lot of us are trying to get us out of there and not to 
continue that.
    Dr. Taylor, the committee welcomes you. I thank the 
Chairman for letting me take the time to introduce a home-grown 
lady. Thank you, doctor.
    Dr. Taylor. Good morning, Congressman Miller, and thank 
you, Congressman Cunningham, for that kind introduction. As you 
said, I am a professor at the University of California, San 
Diego, I am a member of the National Academy of Sciences, a 
past president of the American Society for Biochemistry and 
Molecular Biology. I am speaking today on behalf of the Joint 
Steering Committee for Public Policy, which is a coalition of 
four life science societies that represent approximately 20,000 
biological researchers. I would really like to make the case to 
you and your colleagues for an appropriation to the National 
Institutes of Health that is at least equal to the historic 
increase that Congress approved last year. There is also a 
written version of my testimony which has been submitted.
    I would like to begin by specifically thanking Chairman 
Porter and this subcommittee for the leadership that it has 
shown over the years in support of the National Institutes of 
Health. It is a truly unique institution world-wide. I think it 
is no exaggeration to say that our great progress against 
disease really could not have happened in the past years 
without strong and continuing support from this subcommittee, 
on both sides of the aisle, and from both sides of Capitol 
Hill.
    The Joint Steering Committee is supporting an appropriation 
for NIH in fiscal year 2000 of $18 billion, a $2 billion, or 15 
percent, increase over the 1999 level. This increase represents 
what is required to fulfill the second year of the 
congressionally-adopted plan to double the NIH budget over a 
five-year period. We are confident NIH will continue to use the 
funds wisely that are appropriated.
    The major effort that was led by the NIH over the past 
several years to sequence the human genome is now nearing 
completion ahead of schedule. The benefits, the information it 
has yielded is truly extraordinary, I think beyond our wildest 
expectations. Also, the genomes of many disease-causing 
pathogens have been sequenced and the information this provides 
is truly extraordinary. But to understand how these genes work 
and to exploit this information is really going to require new 
kinds of investment. We can understand the genes that cause 
diseases, but to understand how those genes work in healthy 
cells and in disease and to develop therapies is really going 
to require investing in new kinds of infrastructure, and 
infrastructure that is going to demand not only biologists and 
physician-scientists, as it has in the past, but also bio-
engineers, computer scientists, chemists, physicists. We need a 
very interdisciplinary structure from now on.
    I think my own experience, I have been supported by NIH 
since the 1970s, all that time in San Diego. I think my career 
and that of most of my colleagues simply could not have 
happened without continuing support from NIH. It is also an 
example where you reap benefits that are unanticipated from 
basic biomedical research. We need to have disease-targeted 
research but also basic biomedical research. You really do not 
know where some of the breakthroughs will come.
    I study cell signalling; how a cell responds to an external 
signal such as a hormone, UV light, and then how it translates 
that into a biological response. The specific molecule I work 
on is called the protein kinase, PKA. When I began twenty years 
ago there were one or two of these known, and now with the 
Human Genome we know that there are 2,000 protein kineses coded 
for in the Human Genome. They regulate processes, 
differentiation, growth, memory, immune responses. The work 
that we have done with this simple PKA in defining its 
structure, its role in the cell really serves with computer 
modeling as a template for every one of those genes. So it 
provides a basic template for understanding what they look like 
and how we might therapeutically attack those proteins.
    Many diseases, as you might imagine, result from these 
critical switch molecules. Most molecules in the cell are 
turned off and you need to turn them on in response to these 
outside signals. And so, for instance, insulin binds to its 
receptor. That is also a protein kine as it turns on, and when 
that protein kinase is defective, diabetes results. Tumor 
suppressor genes bind to protein kineses and turn them off, and 
when those tumor suppressor genes are defective, the gene 
cannot be turned off, so it is turned on, and uncontrolled 
growth or malignancies result. So they are a very fundamental 
processes.
    I think we now are in a position to really understand the 
basic features and molecular causes of disease. And also, from 
the genomic information has come new strategies for designing 
antibiotics critically needed for the future.
    I would just like to conclude by saying that the Joint 
Steering Committee is also strongly in support of the 
initiatives that have been really well articulated over the 
years by the NIH Director Harold Varmus, with more emphasis on 
genomics, clinical research support, support for allied 
disciplines and, particularly, we need interdisciplinary 
infrastructures, so we need to work with other agencies to 
develop those, and help disparities among populations within 
the United States, around the world. I think, finally, the role 
that NIH has played in training young scientists is absolutely 
essential; that is their future. And particularly in times of 
economic well-being, I think we really need to reinvest some of 
that in the infrastructure for future generations.
    So I thank you very much for your time.
    [The prepared testimony of Dr. Susan Taylor follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Miller. Thank you very much, Dr. Taylor. Let me ask a 
question. Are you seeing with the large increases of money that 
really have been going to NIH any difference out with you or 
your colleagues as far as the amount of grants available and 
monies available? Are you seeing that out in California?
    Dr. Taylor. Absolutely. I think the environment among the 
young scientists, the young faculty members has really changed 
over the last five years. It was very discouraging to have our 
best young people going into biomedical research and now there 
is really a broader vision of the opportunities. There are many 
new opportunities that simply were not there in biotechnology 
companies, these directions that just simply were not there 
five or ten years ago.
    The excitement now is really bringing in these other 
disciplines--the bioengineers, the computer scientists--people 
who have not really been an integral part of the biological 
community are coming in now and their expertise to understand 
these biological networks, those are familiar things to 
engineers, they are not to the biologists, and so we need them. 
And I think that is one of the very exciting things is you see 
these coming together.
    Mr. Miller. That is great.
    Mr. Cunningham?
    Mr. Cunningham. Thank you, Mr. Chairman.
    I do want to tell you, Dr. Taylor, my daughter told me that 
she has looked at both the medical profession and going into 
research, and she thinks the researcher-scientists are boring. 
She says they never talk, they just work. They just look at 
their microscopes and they do all the bugging stuff. So I think 
she is tending more to be a doctor.
    I need some of those memory genodes--not for myself, but 
for my friend, Mr. Dickey from Arkansas. [Laughter.]
    We always pick on Jay Dickey when we get a chance, so I 
couldn't let that go.
    Dr. Varmus testified with a whole host of people from NIH 
and he talked exactly about what you are talking about, the 
genetic switching and the different diseases and just looking 
at the different combinations available in creating those are 
things that NIH is doing. I think it is some of the most 
scientific research that we have going.
    I know Dr. Klausner from the Cancer Research Center is 
going to be at UCSD and we are going to do a Town Hall meeting 
in October. We just did one on diabetes, the Diabetes 
Association, last night. Just for your information, Newt 
Gingrich is now on the Diabetes board with Mary Tyler Moore and 
he was one of the big pushers especially for juvenile diabetes 
research.
    I do have a concern. I think many of us support doubling 
the NIH funding for medical research. And I will tell you why. 
Personal opinion, I do not think this Congress has anything to 
do out of the Constitution with things like National Endowment 
for the Arts and a lot of the things that we do. But we do for 
national security, we do for transportation, we do for 
international trade, and medical research which the States 
cannot do. And that is one reason that this conservative 
Republican supports wholeheartedly increasing the medical 
research budget. I would like to put every penny of this $10 
billion we are going to be spending in Kosovo into medical 
research.
    I want to thank you for coming and the other members here. 
I used an example that coming down in a parachute, that it is 
pretty tough realizing you are coming down over enemy 
territory. That is not second to a doctor looking you in the 
face and saying ``Duke Cunningham, you have got cancer.'' I am 
a cancer survivor. But I look at children with diabetes and I 
listened to the last witness talking about the children, it is 
a war. It is a war. It may not be with guns and bullets but it 
definitely is a war, and it one that we can win and we have got 
to do that.
    So I want to thank you for coming today.
    Dr. Taylor. Thank you very much. And it definitely is a 
war. It not just the genetic diseases, it is also the resistant 
strains of bacteria that will become also a different kind of 
threat to us. So it definitely is.
    Mr. Cunningham. Give me some of those memory genodes for 
Mr. Dickey. [Laughter.]
    Mr. Miller. Thank you very much, Dr. Taylor. And thank you, 
you kept the discussion at low enough level that I could 
understand it. Thank you very much.
                              ----------                              

                                          Thursday, April 15, 1999.

                          ALZHEIMER'S DISEASE


                                WITNESS

MAUREEN REAGAN
    Mr. Miller. We have Maureen Reagan. Hello there. Another 
Californian?
    Ms. Reagan. Yes, Mr. Chairman, a Northern Californian.
    Mr. Miller. There is a difference I guess between Northern 
and Southern?
    Ms. Reagan. Well, in California there is. But we all claim 
the same heritage.
    Mr. Miller. Thank you very much for being here.
    Ms. Reagan. Thank you, Mr. Chairman. I really appreciate 
your allowing me to be here. I am here on behalf of my family 
and the millions of families like mine who make up what we call 
the Alzheimer's Family.
    The Alzheimer's Association, of which I am a member of the 
board, is comprised of over 200 chapters and more than 35,000 
volunteers who work throughout the country to assist families 
with respite services and caregiver education. Through the 
Ronald and Nancy Reagan Research Institute, the Association is 
making the largest ever private investment in Alzheimer's 
research of more than $16 million this year.
    Ronald Reagan always had the uncanny ability to see where 
we as a Nation are and where we ought to be. On September 30, 
1983, in a Presidential Proclamation which drew attention to 
Alzheimer's disease for the first time, the President said, 
``The emotional, financial, and social consequences of 
Alzheimer's disease are so devastating that it deserves special 
attention.'' As a testament to his vision, he went on to state 
that ``Research is the only hope for victims and families.''
    If he were here today, Mr. Chairman, I know that my father 
would commend this subcommittee for the investment you have 
made in research over the years. Because of that investment, 
scientists have uncovered the basic mechanisms of Alzheimer's 
disease, they have identified four different genes associated 
with this disease, as well as more effective diagnosis. And the 
FDA has so far approved two drugs for treating the early stages 
of Alzheimer's.
    Those advances offer us hope but they do not give us a 
reprieve. Whether it afflicts a neighbor who quietly fades 
behind the upstairs curtain, or a relative who no longer comes 
to visit at holidays, or a former President, the effects of 
Alzheimer's are drawing closer by the day. Four hundred 
thousand people fall victim to this disease every year. Unless 
we stop it, the 4 million American patients will grow to 14 
million within just a few decades.
    There is no way to measure the human cost, but we do know 
that Alzheimer's is draining more than $100 billion a year, 
mostly from families who care for their patients at home. We 
know that Medicare spends 70 percent more to care for 
beneficiaries who have Alzheimer's, for whatever malady, 
because our patients cannot help in their own medical care, can 
no longer in many cases even say where it hurts. Absent these 
higher costs, your job of keeping Medicare solvent would be a 
lot easier.
    Last year this subcommittee's actions launched a prevention 
initiative which may slow the progression of this horrible 
disease. Scientists have found evidence that such commonplace 
treatments as estrogen, vitamin E, and anti-inflammatories like 
Ibuprofen may help slow the onset of Alzheimer's. As a result, 
the National Institute on Aging last month launched the first 
large scale clinical trial ever aimed at preventing 
Alzheimer's.
    Mr. Chairman, this subcommittee made a down payment on a 
prevention initiative with an additional $50 million for 
Alzheimer's research in this fiscal year. It is vitally 
important that that effort be sustained. Specifically, we are 
asking for an increase in Alzheimer's research by $100 million 
in fiscal year 2000. These funds would focus on additional 
clinical trials for potential treatments, discovering 
biological markers and reliable tests that would allow early 
detection, developing laboratory models to chart how the 
disease progresses, testing new methods of care to improve the 
quality of life, and better defining Alzheimer's by gender, 
race, and cultural background.
    Mr. Chairman, Nancy Reagan does the exhausting and heart-
wrenching work of directing my father's care. She works every 
day to ensure he has a loving, happy, stimulating environment. 
And she, like all Alzheimer's caregivers, wakes every morning 
and for a split second hopes it is okay. She watches her life 
partner disappear before her very eyes. And like all our 
caregivers, she goes to sleep at night knowing she has done her 
best.
    What I can do is to speak to people throughout America and 
marshall our collective energy to fight back. All I can do for 
my father now is to promise that this will be the last 
generation of American families to suffer the devastation of 
watching a loved one slip into the quiet.
    We need your help. In many areas we are so close to answers 
we can almost touch them. With your help, we will find those 
answers. Please help us.
    [The prepared testimony of Maureen Reagan follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Miller. Thank you for your role of advocating the need 
for that. You mentioned caregiver, that is not under NIH but it 
is something that needs to be highlighted more and 
strengthened. I have met with caregivers in my area in 
Florida--I have a very large geriatric population in my area--
and it is very demanding, as I am sure your mother is 
experiencing. We need to provide the support for the 
caregivers.
    Ms. Reagan. Oh, absolutely. Most of the caregivers are 
seniors themselves. They are spouses, in some cases off-spring, 
and they have their own health problems. So it really feeds on 
the whole problem that we have throughout Medicare and 
throughout the whole country. It is a ticking time bomb.
    Mr. Miller. As a fiscal conservative like Mr. Cunningham 
over there, this is one area where you find really very wide 
support within the conservative area and there is very 
bipartisan support for this area. I think one of the great 
frustrations we have is the lack of knowledge that NIH even 
exists and that NIH is only located in Bethesda, and, as you 
know, over 90 percent of the money flows throughout the 
country. So anything we can do to promote this cause just gains 
that better national support.
    I thank you for your advocacy of this because it is really 
important.
    Mr. Cunningham?
    Mr. Cunningham. Thank you, Mr. Chairman.
    I think most of us as members have visited different 
facilities. We have three facilities in San Diego. I understand 
that, especially in the later cases, the disability, I have 
heard figures that it is going to be the most expensive disease 
that we have. Secondly, it is the most debilitating, and not 
just for the individual but for the family as well, for the 
caregivers.
    I am wrestling in my own mind. I met, as I mentioned a 
moment ago, with Dr. Varmus and Dr. Goldstein at NIH. We have 
an issue coming up, I am from a pro-life background, and that 
is called stem cell research. But I have seen the value of stem 
cells, and they are talking about the research in that 
particular area, for example, as one of the bright lights that 
we have for Alzheimer's and diseases like that, where they can 
look at the brain, determine where the problems are, and 
actually insert these stem cells that are grown. That doesn't 
cure it, but at least it stops the progression and inhibits it 
from growing. I am going to vote for that. I will probably take 
a hit from my community but sometimes we have got to do what we 
believe is right.
    God bless you.
    Ms. Reagan. Thank you. Nice to see you, Congressman.
    Thank you, Mr. Chairman.
    Mr. Miller. Thank you very much. Your father is a hero to 
so many of us.
    Ms. Reagan. Thank you. He is a hero to me, too.
    Mr. Cunningham. Tell your brother Michael hello for me. He 
was chewing on me a couple of months ago. I have got to call 
him.
    Mr. Miller. It doesn't seem like a day goes by that someone 
is not mentioning his name. It is one that we all look up to. 
We wish him well and we wish your mother well in the caring for 
her husband.
    Ms. Reagan. Thank you. In answer to the unasked question, 
he is doing very well. He makes it easy for us. It is not 
always the case with Alzheimer's, there can be terrible 
personality reversals. But in his case, he makes it very easy. 
But it is just a horrible disease and to watch it just get 
worse----
    Mr. Miller. Personality still comes through?
    Ms. Reagan. Yes. I think there are just things he was born 
with.
    Mr. Miller. Thank you very much.
    Ms. Reagan. Thank you so much, Mr. Chairman.
                              ----------                              

                                          Thursday, April 15, 1999.

                CHILDREN AND ADOLESCENT HEALTH SERVICES


                                WITNESS

DR. RENEE JENKINS, M.D., AMERICAN ACADEMY OF PEDIATRICS
    Mr. Miller. Next we have Dr. Renee Jenkins. Hello. You only 
had to come a short distance.
    Dr. Jenkins. Right. A taxicab ride.
    Mr. Miller. Welcome, and please proceed.
    Dr. Jenkins. Good morning, Congressman Miller. I am Dr. 
Renee Jenkins, a practicing pediatrician, professor and chair 
of the department of pediatrics and child health at Howard 
University. On behalf of the American Academy of Pediatrics and 
our pediatric colleagues, I would like to thank the 
subcommittee for the opportunity to present this statement.
    As we approach the new millennium, we know that most of the 
great public health achievements of the 20th century have 
directly impacted the lives of children and adolescents. We 
heard about some of these this morning. But among the larger 
achievements are vaccinations, the control of infectious 
diseases, motor vehicular safety, and healthier mothers and 
babies as evidenced by the decrease of infant and maternal 
mortality.
    If we as a Nation are to meet the public health challenges 
ahead of us, which are new and emerging infectious diseases, 
health disparities, costly chronic diseases, we must continue 
to invest in a continuum of public health activity that 
includes the full spectrum of biomedical, behavioral, and 
health services research. These efforts should be invested in 
disease prevention and health promotion, target health care 
services for vulnerable populations, and educate a primary care 
and public health workforce.
    I will focus my oral remarks on a few observations from my 
practice and research experiences, and the Academy's specific 
funding recommendations are attached to my written testimony.
    Under family planning, the consequences of adolescent 
pregnancy, sexually transmitted diseases, and HIV/AIDS add 
urgency to the need to help adolescents make informed, 
responsible sexual decisions. As a pediatrician, I counsel 
teenagers on responsible sexual decision-making on a regular 
basis. I begin with abstinence which is the surest way to 
protect against sexually transmitted diseases and pregnancy. 
However, I do have patients who are already sexually active, 
and for those patients confidential contraceptive health care 
services, including screening for STDs, should be available to 
male and female adolescents. And for low-income patients, the 
family planning services through the Title 10 program must be 
maintained, accessible, and adequately funded.
    Under tobacco, for decades the pediatric community has 
strived to curb children and adolescents access to and use of 
tobacco. Just last week, research findings published in the 
Journal of the National Cancer Institute found that cigarette 
smoking during childhood or adolescence may lead to long-term 
or even permanent genetic damage in the lungs that increases 
the risk of lung cancer--even after the smoker quits smoking. 
What could be more compelling as a reason to strengthen the 
commitment to funding prevention and tobacco control efforts? 
With sufficient funding, the CDC can provide States with the 
capacity to conduct science-based tobacco control programs that 
effectively reduce youth smoking, and through the National 
Tobacco Control Program broaden prevention and cessation 
programs as well as tobacco impact programs.
    Under injury prevention, violence takes a terrible toll on 
our Nation's young people. Homicide is the second leading cause 
of death for young Americans between 15 and 24 years old. And 
for African-American youth, it is the leading cause of death. 
As a pediatrician, I see the ravages of violence. And as we 
know, violence has no geographic boundaries. With families and 
in communities, pediatricians have and must play an important 
role in the prevention and management of youth violence. Some 
of these roles were outlined in guidelines published this 
January by the Academy's Task Force on Violence, on which I 
served. Additional funding would enable the CDC's National 
Center for Injury Prevention and Control to expand efforts to 
reduce physical and sexual violence against children and to 
develop comprehensive youth violence prevention programs.
    Also addressing the NIH, as previous speakers have, they 
have made great strides in improving health status and well-
being of children and youth in all aspects in life, from issues 
of maternal to infant transmission of HIV to the reduction of 
infant mortality. In fact, there is an infant mortality NICHD-
funded project right here in D.C. that is also addressing teen 
pregnancy. We have been awarded the opportunity to identify and 
test science-based interventions to further reduce the 
disproportionate number of minority infants who die in the 
first year of life. I serve as a principal investigator on one 
of the adolescent pregnancy prevention protocols.
    I thank you for this opportunity to provide our 
recommendations for the coming fiscal year. As this 
subcommittee is once again faced with difficult choices and 
multiple priorities, we know that, as you have in prior years, 
you will not forget America's children. On behalf of the 
Academy, I thank you.
    [The prepared testimony of Dr. Renee Jenkins follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Miller. Thank you very much for that very fine 
testimony.
    Dr. Jenkins. Just in time for the buzzer.
    Mr. Miller. Perfect timing. Thank you very much for keeping 
with the timing. I appreciate that.
                              ----------                              

                                          Thursday, April 15, 1999.

                        MEDICAL RESEARCH FUNDING


                                WITNESS

DR. JORDAN J. COHEN, M.D., PRESIDENT, ASSOCIATION OF AMERICAN MEDICAL 
    COLLEGES
    Mr. Miller. Dr. Jordan Cohen. Welcome.
    Dr. Cohen. Thank you, Mr. Chairman. I am Jordan Cohen, 
president of the Association of American Medical Colleges. I am 
here today testifying on behalf of the Ad Hoc Group for Medical 
Research Funding, which is a coalition representing more than 
300 patient groups, scientific societies, research 
organizations, as well as industry.
    The members of the Ad Hoc Group are deeply grateful for the 
nearly 15 percent increase in NIH funding that Congress 
provided for the current fiscal year. And Mr. Miller, we thank 
you and all the subcommittee members for making the NIH one of 
your highest priorities.
    During the past weeks you have heard from each of the NIH 
institute directors about the really remarkable scientific 
opportunities that have arisen from the public investments in 
medical research. And you have heard, and will hear, from 
members of the public in this current series of hearings of the 
terrible burdens that disease and disability continue to place 
on individuals and their families and on our Nation as a whole. 
Maureen Reagan gave us I think a very moving example of the 
kind of burdens that Americans are now facing.
    We appreciate the trust that you, on behalf of the American 
people, have placed in our community of scientists and 
institutions to fulfill the promise of science and alleviate 
and eliminate the human need and suffering.
    We are absolutely certain, Mr. Chairman, that the 
unprecedented possibilities opened up by recent advances in 
science fully justify continuation of the commitment that began 
last year to double the NIH budget by the year 2003. The Ad Hoc 
Group supports a 15 percent increase in the NIH budget for 
fiscal year 2000 so that our country can continue to lead in 
surmounting the health challenges facing all of us. We wish to 
underscore the importance of sustained multiyear growth to 
enhance current research activities, develop emerging 
scientific opportunities, and attract the brightest students to 
research careers.
    Dr. Taylor just told us about the stimulus now that we are 
sensing among young people finally seeing some opportunities 
for a life-long career in science. One of the real difficulties 
that they will face however, if there is a fluctuation in the 
support, that kind of stimulus and incentive to pursue careers 
in science will clearly not be sustained if they see the 
uncertainties that year-to-year fluctuations would entail. 
Dramatic fluctuations in year-to-year funding can be as harmful 
to the research enterprise as inadequate growth and could put 
at risk the investments made in previous years. For this 
reason, the President's budget request is really a major 
disappointment to all of us.
    Despite the progress NIH has made to advance the 
understanding and treatment of disease, the health of the 
American people is still threatened by disease and disability 
and premature death. Permit me to highlight just a few of the 
serious health challenges that continue to confront us as we 
enter the next century.
    Infectious diseases still pose a major threat as new human 
pathogens are discovered and previously known and controlled 
microorganisms acquire antibiotic resistance. In addition, the 
risk of bio-terrorism necessitates expanded research on 
diagnostics, vaccines, and therapeutic agents.
    Secondly, the baby-boom generation is aging. As we all 
know, the number of Americans over 65 will double in the next 
30 years, to more than 69 million. Research on chronic 
disabling diseases such as osteoporosis, arthritis, 
Parkinson's, and Alzheimer's disease will lead to new 
prevention and treatment strategies that will help reduce the 
enormous economic and social burdens that will otherwise 
confront our country.
    Our Nation's population also is growing increasingly 
diverse. Eliminating or reducing the disproportionate burden of 
disease and disability among minorities and the 
socioeconomically disadvantaged will not only improve the 
quality of life for many and benefit all of us economically, 
but also politically and culturally as a Nation of caring 
individuals.
    The Ad Hoc Group funding proposal for fiscal year 2000 
would permit the NIH to accomplish the following tasks, among 
others:
    First, sustain and enhance basic research by increasing 
support for current research programs as well as promoting 
opportunities for new investigators and for those areas of 
biomedical research that are newly emergent.
    Second, support existing and develop new clinical research 
opportunities and expand support for clinical research 
training.
    Another critical need is the infrastructure for clinical 
research, including the general clinical research centers, the 
so-called GCRCs, which create and sustain specialized 
institutional resources in which clinical investigators can 
develop innovative approaches to therapy.
    Third, reinvigorate the research training, including 
expanding the medical research opportunities for minority and 
disadvantaged students, and providing for more 
interdisciplinary training.
    Fourth, if we are to achieve the full measure of the 
revolution in medical science, we must enhance our 
institutional research capacity. As was noted, a great deal of 
the NIH budget, as the subcommittee well knows but many in the 
country do not, is expended in our institutions of higher 
learning and medical schools across the country. We must 
enhance our institutional research capacity, including 
renovating and replacing outdated facilities, providing state-
of-the-art instrumentation and other research equipment, and 
promoting new information and computer technologies.
    And finally, increase resources devoted to public 
information about health, such as the NIH's clinical trials 
database and the National Library of Medicine's new MEDLINE-
Plus.
    Mr. Chairman, as you and your committee determine your 
priorities for fiscal year 2000, we urge that medical research 
be considered as the foundation underlying a continuum of 
public health activities that must be sustained to achieve our 
common goal of a healthier, more productive Nation. Patients, 
the scientists, the health care professionals represented by 
the Ad Hoc Group stand ready to work with all of the supporters 
of medical research on Capitol Hill to achieve the goals that I 
have outlined for fiscal year 2000 and beyond. Thank you very 
much.
    [The prepared testimony of Dr. Jordan J. Cohen follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Miller. Thank you, Dr. Cohen. I am a very strong 
supporter of NIH, and I hope we are successful this year. But 
it is always tough every year, as you know.
    Dr. Cohen. We are here to help.
    Mr. Miller. Thank you very much.
                              ----------                              

                                          Thursday, April 15, 1999.

                             AIDS RESEARCH


                                WITNESS

DANIEL ZINGALE, EXECUTIVE DIRECTOR, AIDS ACTION COUNCIL
    Mr. Miller. Now we have Mr. Zingale. Welcome.
    Mr. Zingale. Thank you. I am Daniel Zingale, executive 
director of AIDS Action Council, the national voice for more 
than 3,200 of our Nation's leading community-based AIDS 
organizations and the millions of Americans they serve.
    First, we want to thank you for your continued support for 
live-prolonging AIDS programs and funding that have supported a 
strong national response to this epidemic. Quite simply, your 
leadership has saved thousands of lives and made real progress 
toward ending the epidemic.
    Mr. Chairman, today I come here not simply to advocate for 
continued vigilance in the war on AIDS, but also for the 
national imperative that Mr. Cunningham referred to--a great 
American war on disease. America achieved world dominance in 
the 20th century through a determined and unwavering national 
commitment to fighting and defeating the forces that threatened 
peace, democracy, and human rights in America and throughout 
the world. Our leadership, unity, and courage have made America 
the world's sole super power and, quite simply, the greatest 
economic, technological, and compassionate civilization in 
human history.
    And now on the brink of a new century, we can build on our 
unparalleled economic and technological superiority by looking 
inward. While the 20th century was about protecting the 
American people from enemies abroad, the 21st century must also 
be about protecting the American people from enemies from 
inner-space--the deadliest viruses, bacteria, and invaders of 
the human cell.
    Last year more than 2 million Americans, men, women, and 
children, died from deadly diseases. Today, cancer, heart 
disease, diabetes, and AIDS may be the greatest threat to the 
health and well-being of the American people and the world. In 
fact, HIV today is spreading so fast in some parts of the world 
it threatens to bring down entire nations.
    And now the disease groups come before you for the last 
time this century. And as the representative for those affected 
by the deadliest virus of modern times, we ask you to continue 
your extraordinary leadership by building on America's new 
prosperity and economic security and by waging a great American 
war on disease. This is a war we are already beginning to win. 
Breakthroughs in heart disease, diabetes, and cancer all 
provide hope that we will one day defeat these deadly diseases. 
In a visionary Nation, Republicans and Democrats came together 
during the last fifteen years to overcome fear and ignorance by 
declaring war on AIDS and investing in research, care, and 
treatment. As a result, we have the first life-prolonging 
treatments for AIDS.
    But if we commit to a great American war on disease, let's 
take a look at the battle plan. Instead of allowing the enemy 
to invade the borders, let's fortify the first line of 
defense--to improve disease prevention. It has been said that 
AIDS has been a magnifying glass on some of our Nation's great 
social ills, such as intolerance, inadequate access to health 
care. Well, it is also a window into our Nation's far-sighted 
approach to the war on disease.
    Indeed, we have never made prevention a top priority. While 
medical research is 1 percent of the Federal budget, disease 
prevention is only one-tenth of 1 percent. Preventing disease 
not only saves lives, it saves money. Just last year the 
Centers for Disease Control and Prevention said that if we 
prevented only 1,255 new HIV infections each year, we would 
recoup the cost of Federal prevention spending in future health 
care savings.
    Still, for the past four years HIV prevention spending has 
been flat and there have been no new initiatives around HIV 
prevention. Even worse, new HIV infections are on the rise, 
particularly among young people. Every hour in America two 
young people are becoming newly infected with HIV. AIDS is 
quickly becoming an epidemic among our young.
    If we had a medical vaccine for HIV, imagine the forces 
that would be deployed to get it out there. Tragically, today 
we have a virtual vaccine--prevention and education--and those 
same forces are paralyzed. To begin a new approach on the war 
on disease as it concerns AIDS, wepropose a $184 million 
increase over fiscal year 1999 for the Centers for Disease Control and 
Prevention's HIV related programs.
    By ending flat prevention spending, we can begin a strong 
national effort to reinvigorate HIV prevention for a new 
generation of young people at risk for HIV. A national testing 
campaign, state-of-the-art education, and better AIDS awareness 
for a new generation at risk could all be supported by new 
investments in prevention. In fact, a national poll released 
earlier this month found that 81 percent of Americans want the 
Nation to make youth HIV prevention an equal or greater 
national priority with teen smoking prevention. And we also 
need to make preventing HIV among women and people of color a 
priority as those communities are disproportionately affected 
by HIV and AIDS.
    With half of all HIV infections attributed directly or 
indirectly to substance abuse, treatment on request should be 
the first step in a genuine battle against the twin epidemics 
of substance abuse and AIDS. To achieve better substance abuse 
treatment, AIDS Action Council proposes a $300 million increase 
over fiscal year 1999 for the substance abuse, prevention, and 
treatment services. And until we win the war on illegal drugs, 
let's take HIV out of the equation by allowing the use of 
Federal funds for programs that remove HIV-tainted needles from 
our streets, programs that have been proven to reduce HIV 
infection without increasing drug use.
    Mr. Chairman, we stand at a critical juncture in the war on 
AIDS and the war on disease in general. We urge you to continue 
your work that has saved thousands of lives by fortifying the 
war on disease, and just as important, please make prevention a 
greater priority. Thank you.
    [The prepared statement of Daniel Zingale follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Miller. Thank you very much. I appreciate your 
testimony about prevention. We have been putting a tremendous 
amount, as you know, into the research area and also with the 
Ryan White. Thank you very much for your testimony. For the 
sake of time, I am going to hold my questions down.
    Mr. Zingale. I understand. Thank you.
                              ----------                              

                                          Thursday, April 15, 1999.

                          RYAN WHITE CARE ACT


                                WITNESS

MILDRED WILLIAMSON, MSW, PRESIDENT, BOARD OF DIRECTORS, AIDS POLICY 
    CENTER FOR CHILDREN, YOUTH, AND FAMILIES
    Mr. Miller. We have next Ms. Williamson with the AIDS 
Policy Center for Children, Youth, and Families. Good morning. 
Welcome.
    Ms. Williamson. Good morning to you, and good morning 
everyone. I am Mildred Williamson. I am the administrator of 
two community clinics in Chicago, Woodlawn Hills Center and 
Englewood Family Practice Center. These are two communities 
that never quite recovered from urban renewal of the 1960s nor 
the industrial plant closings of the 1970s. These clinics are 
operated by the Cook County Bureau of Health Services. I am 
also president of the board of the AIDS Policy Center for 
Children, Youth, and Families. I am very thankful to be able to 
speak to you all today. Thank you.
    I am here to talk about the support for the Ryan White Care 
Act and Title IV in particular. The Care Act has improved the 
quality of life and kept hope alive for thousands of people 
from all walks of life who live with HIV disease in our 
country. Today, the Care Act provides the medical and human 
service infrastructure which gives people who need it critical 
access to highly active antiretroviral therapy and a running 
chance at success with very complicated but potentially life 
prolonging treatment regiments. Yet success with these 
treatment regiments is but one part, albeit an important one, 
of what it means to improve the quality of life.
    Quality of life is anchored by security and knowing that 
you have stable, decent housing, a working telephone, 
nutritious food, knowing you are loved by someone, and knowing 
that you have the respect of yourself and people like you in 
society. The thing about the Ryan White Care Act, and Title IV 
in particular, is that it acknowledges that children, young 
people, and women, in particular, do not enjoy equal status in 
society and are sometimes not even respected in society. What 
Title IV does is embrace the most disenfranchised populations 
and treat them in such a way that they deserve to live, and 
live with dignity.
    I am here to ask for your continued support for AIDS 
prevention, research, housing, and care programs. The AIDS 
Policy Center fully supports the fiscal year 2000 appropriation 
recommendations documented and developed by the National 
Organizations Responding to AIDS Coalition which identifies 
funding needs for a broad range of Federal programs. Among 
these programs is the Pediatric AIDS Clinical Trial Group of 
the National Institutes of Health. It evaluates treatments for 
HIV infected children and adolescents and develops new 
approaches to preventing perinatal HIV transmission, which is 
one of the success stories of the Ryan White Care Act and the 
efforts by the National Institutes of Health.
    The AIDS epidemic is devastating in and of itself. It is 
also quite an illuminator of the fact that the most 
disenfranchised serve as the most efficient host, I should say, 
for the travel of HIV infection to occur. What I am saying is 
that while it is an equal opportunity virus, it is most 
efficient in traveling amongst the communities that do not 
share in equal access.
    I am here to say that women who may be living with HIV but 
who are also parents live with and work with these treatment 
regiments for themselves and struggle to parent their children 
in the face of many other difficulties. It is yet one other 
additional issue besides housing, besides concern about freedom 
from domestic violence. Women, young people, and children who 
live with HIV disease or who are at risk for HIV infection, in 
the services that have been provided thus far and the quality 
and comprehensiveness of those services, when the record is 
unravelled of what has been happening, one will get a sense 
that the Care Act and all of its components and the connection 
between prevention research as well can perhaps give us a 
picture of what health care should look like in general for the 
United States population.
    Many people who live with HIV disease, in addition to the 
social issues, live with co-morbidities, such as the ones that 
have been described--hypertension, diabetes, substance use. To 
the extent that the Care Act, the HIV prevention programs, and 
of course the research programs in NIH can marry HIV care as it 
relates to social issues and co-morbidities, that will improve 
our chances for addressing comprehensive health care and 
perhaps making a dent on inequality in the United States in the 
future. I thank you all for your time today.
    [The prepared testimony of Mildred Williamson follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Miller. Thank you very much, Ms. Williamson. You 
certainly work with some of the most challenging and the 
hardest populations when you work with young people with a 
disease. Whether it is AIDS or cancer, it has got to be a tough 
job. So I admire you for the work you do.
    Ms. Williamson. I appreciate your comments. It is a tough 
job but the job is shouldering those who live with the 
circumstances under which they are placed. And to the extent we 
as human services and health service providers can connect with 
people from a point of view of non-hierarchical, non-
judgmental, we can make a contribution to improving quality of 
life.
    Mr. Miller. Thank you.
                              ----------                              

                                          Thursday, April 15, 1999.

              CORPORATION FOR PUBLIC BROADCASTING FUNDING


                                WITNESS

DANIEL J. SCHMIDT, PRESIDENT AND CEO, WTTW-TV, CHICAGO, ILLINOIS
    Mr. Miller. Next we have Mr. Daniel Schmidt, president and 
CEO of WTTW-TV in Chicago. We have got a lot of people from 
Chicago and Chairman Porter is not even here today. [Laughter.]
    Mr. Miller. Welcome, Mr. Schmidt.
    Mr. Schmidt. Thank you, Mr. Miller. Again, my name is Dan 
Schmidt. I am president and CEO of WTTW Chicago. I am 
testifying on behalf of the Association of America's Public 
Television Stations and its members. It is my pleasure to be 
here today to highlight some of the rich menu of services that 
public television stations deliver, as well as our need for 
Federal assistance to continue those valuable programs and 
services in the digital era.
    But first I want to thank this subcommittee for your past 
support for public broadcasting. As a proud father of three 
children, all of whom attend excellent schools in the Chicago 
area but also obtained their head start in writing, reading, 
and math skills from watching public television, I am grateful 
for the boost my kids have received as a result.
    This year, for the second year in what we anticipate will 
be a five year process, we are seeking two appropriations for 
the Corporation for Public Broadcasting, CPB. First is the 
regular appropriation for fiscal year 2002 for $350 million 
which provides general support to the system in the form of 
community service grants. In addition, we are seeking $90 
million in fiscal year 2000 to assist stations in their 
conversion to digital broadcasting.
    As I am sure you know, this historic transition to digital 
technology will provide a quantum leap in the amount of 
information that public television can broadcast at any one 
time on any one single channel. Multicasting, as we call it, 
will enable us to deliver at least four times as much 
educational and informational content into homes and classrooms 
than we do now.
    The Federal Communications Commission has determined that 
all public television stations must begin broadcasting a 
digital signal by 2003. But in major markets like Chicago, all 
of the other commercial stations have a mandate to begin 
digital broadcasting this year or next. To remain viable 
therefore, WTTW and public stations in these markets need to 
take advantage of the master antenna projects that are going on 
with the commercial stations. And so we find that we really 
must convert along with the rest of the market not to be left 
behind. And in our case in Chicago, this process begins next 
month.
    Public broadcasters are seeking $770 million in Federal 
assistance. That is about 45 percent of the total estimated 
conversion costs. We are also seeking funds through the Public 
Telecommunications Facilities Program, or PTFP, at the 
Department of Commerce. The PTFP funding will help us to 
construct basic pass-through facilities, or the bear minimum 
required for conversion. For a station to customize a program 
schedule to meet the needs of its local communities, additional 
equipment must be installed. We are seeking support for this 
equipment through the additional funds requested for CPB.
    It is imperative that public broadcasters secure a 
significant commitment from Congress this year. In addition to 
conversion costs, we are also incurring the additional expense 
of broadcasting in two formats. And smaller stations, 
especially those in rural areas, cannot even consider major 
equipment purchases until they obtain a firm commitment from 
Congress. Without Federal help, these stations will not be able 
to construct digital facilities and will likely go dark after 
the transition period when the FCC reclaims their analog 
channels.
    To fulfill this mandate, we are doing our part in seeking 
financial support from a range of local, public and private 
sources. We are undertaking major fundraising campaigns to 
raise the majority of capital needed to meet the conversion 
mandate. In Chicago, we estimate it will cost us $15 million 
for WTTW to be fully converted. But fulfilling the public 
service goals for digital TV clearly also depends on the 
Federal Government playing its historic leadership role. Quite 
simply, Federal support is necessary to leverage local support. 
And as we talk to our State legislators and to others, they say 
we are going to wait and see what the Federal Government does 
before we make our decision.
    Because public broadcasters by design lack access to 
private capital markets and advertising revenue, we face a 
dangerous double bind with digital transition. Either we divert 
resources from existing programs and risk services on which 
Americans have come to rely, or we fail to make the investment 
in digital for the transition and deny those same citizens the 
promise that digital technology holds.
    Public television's time-honored values will not change in 
the digital world. In fact, we are already developing prototype 
educational applications for digital technology. In Chicago, 
WTTW will be able to extend the outreach of our community 
programming initiatives one hundred-fold, enhancing viewer 
access and interaction. Digital technology will link WTTW with 
other cultural and educational institutions such as the Arts 
Institute.
    Local stations and PBS have joined together to create the 
award-winning PBS On Line, with more than 30,000 pages of 
information and links to companion sites as well as a wealth of 
original material that encourages both informal and formal 
learning. With digital TV, this material can be made available 
to all Americans.
    In a news era of sound bytes and tabloid coverage, WTTW has 
for the past fifteen years produced and broadcast Chicago 
Tonight, a nightly thirty-minute news analysis program that 
provides intelligent, balanced, and fair discussion of local 
issues affecting our lives, one of the few such programs in the 
country. In 1992 WTTW-Chicago made history as the first station 
in America to offer free time to political candidates, we call 
it Candidate Free Time, and it gives candidates running for 
local and Federal offices the rare opportunity to address our 
viewing public in an environment free of interruptions and 
edited sound bytes in an extended format.
    Public television actively contributes to the 
competitiveness of our Nation's economy and to workers' 
productivity by providing a variety of educational services and 
services for adult learners.
    Mr. Miller. Mr. Schmidt, could you kind of bring it to a 
conclusion. Your time has expired.
    Mr. Schmidt. You bet. I am in the final paragraph, Mr. 
Chairman.
    Mr. Miller. Okay. Thank you.
    Mr. Schmidt. For example, our GED on TV program has 
educated more than 2 million people with an estimated economic 
impact of $12 billion.
    As for us in Chicago, we are actively planning for an 
exciting digital future and we do so with three core values to 
guide us. We seek to be the place where Chicago area viewers 
can learn about and understand the issues, trends, and events 
that shape the life in our region and world; and we want to be 
the place where our viewers can connect with our community; and 
finally, as parents and grandparents concerned about the 
violence and sexual content that pervade other media, more than 
ever we want to be a safe harbor for children and families as 
we work to enhance and enrich their lives. Our counterparts 
throughout the country are doing the same, and, with your 
support, we will continue to enhance our record of unduplicated 
quality public service programming.
    Again, Mr. Miller, thank you and your colleagues for your 
attention and for the opportunity to testify this morning.
    [The prepared testimony of Daniel J. Schmidt follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Miller. Thank you for being here today.
                              ----------                              

                                          Thursday, April 15, 1999.

  FUNDING FOR THE NATIONAL INSTITUTES OF HEALTH AND FOR THE NATIONAL 
        INSTITUTE ON DEAFNESS AND OTHER COMMUNICATION DISORDERS


                                WITNESS

DR. MICHAEL D. MAVES, M.D., EXECUTIVE VICE PRESIDENT, AMERICAN ACADEMY 
    OF OTOLARYNGOLOGY, HEAD AND NECK SURGERY
    Mr. Miller. Next we will have Dr. Michael Maves. Thank you 
for being here.
    Dr. Maves. Thank you, Mr. Miller. Good morning, Mr. Miller 
and members of the subcommittee. I am Dr. Michael Maves, 
executive vice president of the American Academy of 
Otolaryngology, head and neck surgery. I am here this morning 
on behalf of our approximately 12,000 members to urge your 
continued generous support for the National Institutes of 
Health and for the National Institute on Deafness and other 
Communication Disorders. As you may know, otolaryngologists, or 
ear, nose, and throat physicians as we are more commonly known, 
are responsible for treating patients with disorders of the 
ear, nose, and throat, and related structures of the head and 
neck.
    I would like to begin by thanking Chairman Porter, you, Mr. 
Miller, and the members of this subcommittee for the leadership 
in securing a 15 percent increase in funding for the National 
Institutes of Health in the previous year. It is largely 
through efforts of this type in this subcommittee that our goal 
of doubling the NIH budget in the next five years will be 
realized.
    This morning I would like to focus my comments on the 
remarkable success to date of the NIDCD. As Members of 
Congress, each of you are singularly aware of the importance of 
communication; it is how you meet with your constituents, it is 
how you present yourself, it is how ideas are exchanged here on 
Capitol Hill. We live today in a society driven by 
communication. And disorders of these processes present a very 
real social and professional barrier to individuals. As Ruth 
Hubbard, a prominent American biologist, observed, ``Without 
words to objectify and categorize our sensations and place them 
in relation to one another, we cannot evolve a tradition of 
what is real in the world.''
    Since its inception in 1988, the NIDCD has made great 
progress towards realizing its unique mission of understanding 
the normal and disordered processes of hearing, balance, taste, 
smell, voice, speech, and language. The NIDCD has supported 
researchers who are devoting their careers to finding the 
causes, cures, and prevention of such disorders which 
collectively affect more Americans than cancer, heart disease, 
orthopedic disorders, or visual problems. Communication 
disorders of themselves never killed anyone, but think of the 
impact of communication disorders on the lives that it has 
touched.
    As in politics, much of the work of today will go towards 
benefitting our country's most important assets--our children. 
While a small part of the funding that the subcommittee 
provides to the NIDCD each year goes to helping today's 
patients through clinical research, we are struggling with our 
colleagues to find new, more efficient ways to treat the 
diseases that these disorders affect and to some day prevent 
them entirely. A growing public demand for evidence-based 
treatment option intensifies our conviction that patient 
oriented clinical research must be supported.
    Presently, however, there is a shortage of adequately 
trained clinical investigators within otolaryngology, head and 
neck surgery. This shortage of investigators inhibits clinical 
research productivity and slows the rate at which material 
available from today's thriving biomedical research community 
finds applications to patients served by otolaryngologists and 
their colleagues in other medical specialties. Mr. Miller, I 
urge you and the members of the subcommittee to examine this 
issue seriously and to provide additional incentives to the 
NIDCD to increase the number of clinical investigators within 
otolaryngology, head and neck surgery.
    As we enter the new millennium, I often hear of the concern 
of the potential problems of Y2K and how our information 
infrastructure will be ravaged by this potential effect. 
Immense intellectual and financial resources have been brought 
to bear on preserving the communication systems we enjoy and 
rely upon today. While I am confident that the Y2K problems 
will not be as serious as projected and that our information 
highway will continue to thrive, I am fearful that many of our 
children with hearing or communication disorders will not 
realize their full human potential in the new millennium. We 
have the intellectual resources to take care of these problems 
but, obviously, adequate financial resources must be put in 
place to achieve our goals.
    Among the most exciting things that the NIDCD has achieved 
have been the understanding of the genetic basis for hearing 
loss and finding ways to alleviate some of the causes of 
hearing loss. Research on methods of assessing hearing in 
infants on the day that a child is born will make 
implementation of Congressman Walsh's newborn infant hearing 
screening bill a reality. Collaborative efforts with other 
agencies will result in greater safety, in comfort for our 
astronauts in space, and bring digital technology to creating a 
new generation of hearing instrumentation.
    NICDC-supported research has enriched our basic 
understanding of the human voice and has resulted in new 
surgical procedures to restore voice to those who once could 
only speak in a whisper. Although the NICDC is among the 
youngest of the NIH's institutes, we believe it has made 
tremendous progress in understanding and improving 
communication for millions of people.
    I am here today to urge your support for another continued 
15 percent increase to the NIH, and perhaps even a larger 
increase to the NIDCD to expand support for patient-oriented 
clinical research by physician-clinicians and clinician-
scientists in this most important area.
    Mr. Miller, I want to thank you for the opportunity to 
present this testimony before the subcommittee. I would be 
happy to answer any questions or work with staff on additional 
ideas. Thank you.
    [The prepared testimony of Dr. Michael D. Maves follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Miller. Thank you very much for your testimony. I hope 
we are able to accomplish that. We have raised expectations so 
high from last year's success. But we will sure try.
    Dr. Maves. Thank you very much, sir.
    Mr. Miller. Thank you.
                              ----------                              

                                          Thursday, April 15, 1999.

     CENTERS FOR DISEASE CONTROL AND PREVENTION, POLIO ERADICATION


                                WITNESS

DR. JOHN L. SEVER, M.D., PROFESSOR OF PEDIATRICS AND INFECTIOUS 
    DISEASES, CHILDREN'S HOSPITAL, WASHINGTON, DC.
    Mr. Miller. And now we have Dr. John Sever. Welcome.
    Dr. Sever. Good morning, Congressman Miller.
    Mr. Miller. Good morning.
    Dr. Sever. I am Dr. John Sever. I am a professor of 
pediatrics and infectious diseases at the Children's Hospital 
here in Washington, D.C., and I am a member of Rotary 
International.
    I want to thank you for this opportunity to testify on 
behalf of Rotary International in the support of polio 
eradication and the activities of the U.S. Centers for Disease 
Control and Prevention. Rotary International, as you probably 
know, is a global association of more than 1.2 million business 
and professional leaders in 160 countries. In the United States 
today there are some 400,000 members. All of our clubs work to 
promote humanitarian service, high ethical standards in all 
vocations, and international understanding.
    In the United States, Rotary has formed a USA coalition for 
the eradication of polio. It is a group committed to child 
health advocacy and it includes Rotary, the March of Dimes 
Birth Defects Foundation, the American Academy of Pediatrics, 
the Task Force for Child Survival and Development, and the U.S. 
Committee for UNICEF. These organizations join us in expressing 
our gratitude to you for the support that you have provided for 
the eradication through the support to the Centers for Disease 
Control.
    For fiscal year 1999, you appropriated $67 million for 
CDC's overseas polio eradication efforts. This investment has 
made the United States a leader among donor nations in the 
drive to eradicate this crippling disease. The United States 
commitment to polio eradication has stimulated other countries 
to increase their support. At present, the United Kingdom, 
Japan, Denmark, Germany, Belgium, Canada, Finland, Italy, and 
Norway are among those countries which have been following 
America's lead and have recently announced special grants to 
help in the eradication of polio.
    By the time polio has been eradicated, Rotary International 
expects to have expended approximately $500 million on this 
effort, the largest private contribution to a public health 
initiative ever. Of this, $334 million has already been 
allocated for polio vaccine, operational costs, laboratory 
surveillance, cold chain training, and social mobilization in 
120 countries. This is in addition to the volunteer efforts of 
Rotarians throughout the world.
    The global eradication strategy is working. In 1998, when 
Rotary began the program, 100 nations around the world suffered 
from the burden of polio. And if you can see this from this 
direction, the colored nations--Latin America, Central America, 
Africa, most of Asia. And now in 1988, ten years later, polio 
has been confined to only two significant areas in the world--
Southeast Asia around India, Pakistan, Bangladesh, and Central 
Africa, sub-Sahara, and Africa--and there is only a few 
thousand cases that occurred and remain.
    The target is the year 2000 for eradication, with 
certification of complete eradication by the year 2005. With 
just a few years remaining to defeat this disease, the nations 
where polio still exists and have disability, your continued 
support is certainly appreciated.
    For fiscal year 2000, we respectfully request that you 
provide $83.4 million for the targeted polio eradication 
efforts for the Centers for Disease Control and Prevention. 
This is consistent with the President's proposed budget. This 
increase is needed to meet the high cost of eradication of 
polio in the final stronghold, and that is in Sub-Sahara and 
Africa. The underdeveloped and conflict-torn countries of 
Africa represent the greatest challenges to the success of this 
eradication effort.
    In addition, the appropriation will allow the CDC to help 
African nations accelerate their polio eradication activities, 
improve surveillance for polio and other diseases, and support 
peace-building efforts for national immunization days. Without 
additional commitments, we may not be able to reach that goal 
of eradication by 2000 and will prolong therefore the need to 
continue national immunization days and routine immunization 
worldwide. The time for this final assault therefore is now.
    Let me point out that although since 1979 the United States 
has been free of polio, we still spend $230 million annually in 
this country to protect our newborns against the threat of the 
importation of polio. Globally, over $1.5 billion is spent 
annually to immunize children for polio. This figure does not 
even include the cost for the treatment and rehabilitation of 
these victims nor the immeasurable toll in human suffering 
which polio exerts on its victims and families. But once polio 
is eradicated, immunization can be discontinued and the 
tremendous resources will be available for other health 
priorities.
    Humankind is at the threshold of this victory against polio 
and we must not miss this opportunity. It will be the second 
major disease in history to be eradicated. The world celebrated 
the eradication of small pox in 1979, and no child anywhere in 
the world will ever suffer from small pox again. We are very 
close to this eradication completion, and we would appreciate 
your continued support in that effort. Thank you, sir.
    [The prepared testimony of Dr. John L. Sever follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Miller. Thank you, and I thank Rotary for taking the 
leadership role in this. It is really exciting. I visited the 
CDC and saw the presentation about the success of it. It is a 
worldwide organization that was able to mobilize it and you 
have a lot to be proud about. So thank you for your part in 
that.
    Dr. Sever. Thank you. We appreciate your support too, sir.
    Mr. Miller. Thank you.
                              ----------                              

                                          Thursday, April 15, 1999.

                      FUNDING FOR CANCER RESEARCH


                                WITNESS

DR. DANIEL VON HOFF, M.D., PRESIDENT, AMERICAN ASSOCIATION FOR CANCER 
    RESEARCH
    Mr. Miller. Next we have Dr. Daniel Von Hoff, American 
Association for Cancer Research. Thank you for sitting through 
the morning session, sir. Welcome.
    Dr. Von Hoff. Good morning, Congressman Miller, and staff. 
My name is Dan Von Hoff. I am a doctor who takes care of 
patients with cancer everyday. I am president of the American 
Association for Cancer Research, which is the largest group of 
scientists and physicians caring for patients in the world. I 
am also a cancer survivor.
    I know, especially this morning, that you and the other 
Members of Congress have many priorities. However, it is now 
time to undertake a national approach to eradicate cancer. I am 
here to tell you about a new plan to accomplish that goal.
    The last few years have really shown encouraging trends in 
the treatment of patients with cancer. As you can see in this 
panel, the death rate per hundred thousand Americans has now 
begun to fall because of your support. The death rate is going 
down.
    As can be seen in this panel, this is because of earlier 
detections such as mammograms to help us find earlier, more 
curable disease, more effective and less toxic treatment of 
patients with advanced cancer, and because of prevention, as we 
will talk about in a minute.
    We are having greater success in treating patients with 
advanced cancer. Here we see a CAT Scan, on your left, of a 
patient's liver, demonstrating advanced breast cancer, the 
large holes, before treatment and after treatment with a new 
anticancer agent. With this remarkable shrinkage of tumor, the 
patient is alive and well, working eight years later with no 
evidence of disease. I thought personally I would never live to 
see this. So even with advanced cancer we can eradicate that 
cancer in some patients.
    However, despite falling mortality rates, as can be seen in 
that panel before, we still have a dramatic increase in the 
patients who will be diagnosed with cancer in the United 
States. This is because us baby-boomers are developing cancer 
as we age, because cancer, as you well know, is more common in 
the elderly. Unfortunately, it will increase dramatically, so 
there will be 2 million new cases by the year 2025. By the year 
2010, it will cost us at least $2 billion annually and will be 
who knows how much of a burden after that.
    Now what can we do to head off this epidemic? We are 
learning how to prevent cancer. First of all, stop smoking, 
stop smoking, stop smoking. Tobacco is responsible for more 
than 30 percent of all cancer deaths. It is exciting because we 
now have found some anti-hormonal agents such as tomoximun can 
actually decrease breast cancer risk by 49 percent after only 
four years of taking the agent. And we are learning, finally, 
that diet can make a difference, such as selenium in the diet.
    I have just come from Philadelphia where 10,000 cancer 
researchers have met at our annual meeting. At that meeting, we 
heard of a dramatic evidence that lycopine, which is a 
naturally occurring substance in tomato paste, can actually 
prevent prostate cancer and may actually be effective in 
treating prostate cancer.
    We are here today because we have a plan. We are very 
worried about this cancer health care crisis which we feel is 
preventable and because we feel we could save Medicare a lot of 
money in the future if we act now. We have a plan and this plan 
is detailed in this report I have in my hand, which is the 
March Research Report from a task force which was recently 
circulated to Members of Congress. In this report, we outline 
the steps necessary to prevent the epidemic. But, of course, 
this requires some investment.
    We have a plan. Currently, our investment in curing and 
preventing cancer is $2.7 billion per year. We propose we begin 
doubling the current NCI budget, like you are working to do 
with the NIH budget, in fiscal year 2000 and increase that 
budget by 20 percent per year for the next four years until we 
reach the $10 billion level. The question before us is can this 
money help. You bet it can, because now we have new tools, the 
genetics, and the understanding now to make a difference in 
treatment and prevention strategies. We estimate this 
investment could reduce cancer deaths by 150,000 to 200,000 
lives each year.
    In closing, I would like to mention one final item. Today 
is April 15th--tax day. A day when all in this country show our 
good faith to contribute to the greater good. There really 
don't appear to be too many people who want to pay more taxes. 
There is, however, an exception. In a survey reported in USA 
Today, 87 percent of adults in the United States said they 
would willingly pay more taxes for cancer research which would 
produce a cure for cancer.
    Our citizens clearly feel the burdens of cancer each year. 
They know it is increasing. They want it to end. And unless we 
act now with urgency, at the current rate, the human and 
economic cost of cancer in the United States will become 
totally unmanageable within the next decade. Thank you for your 
attention.
    [The prepared statement of Dr. Daniel VonHoff follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Miller. Thank you. A rather ambitious goal and 
objective, but I assure you every Member of Congress has been 
impacted by cancer, as almost every American, by family 
association. So we will do the best we can.
    Dr. Von Hoff. I appreciate your support.
    Mr. Miller. Thank you very much for being here today.
                              ----------                              

                                          Thursday, April 15, 1999.

           STUDENT FINANCIAL ASSISTANCE AND EDUCATION FUNDING


                                WITNESS

DR. DEBORAH FLOYD, PRESIDENT, PRESTONSBURG COMMUNITY COLLEGE
    Mr. Miller. Our next witness is Dr. Deborah Floyd. Thank 
you for sitting through the morning session. Welcome.
    Dr. Floyd. Good morning, Representative Miller. My name is 
Deborah Floyd. I am the president of Prestonsburg Community 
College, a Kentucky college that serves a 2,000 square mile 
area in the central Appalachians. I am pleased to represent the 
American Association of Community Colleges, AACC, on the fiscal 
year 2000 appropriations for the Department of Education and 
Labor.
    AACC represents 1,091 associate degree-granting public and 
private institutions of higher education. Our college would be 
a different institution or perhaps not even open at all if it 
were not for the programs funded by this subcommittee. Last 
year, more than 48 percent of our 2,600 credit students 
received a Pell Grant, 63 percent of our students receive some 
form of financial assistance, and 19 percent of our students 
are on welfare assistance. For most of our students the door to 
a better life, to an education would be tightly closed without 
the access to Federal financial aid.
    AACC enthusiastically supports the fiscal year 2000 request 
for the student aid assistance. The proposal is responsible, it 
is balanced, and it will enable thousands more people to attain 
a college education without accumulating huge levels of debt. 
It is important that this proposal be adopted in whole, since 
the Federal student aid programs complement each other. I 
understand that the essence of this proposal is about to be 
reflected in a resolution coming before the House Education and 
Workforce Committee.
    This morning I will talk about four programs--Pell Grants, 
the new Child Care Grants, strengthening institutions, and the 
Carl D. Perkins Act.
    First and foremost, I urge you to increase the Pell Grant 
maximum by $400. Community colleges commend this subcommittee 
and the Administration for its strong support of Pell Grants 
over the last four years. In the 1996-97 award year, more than 
1.2 million community college students received a Pell Grant 
averaging $1,474. This funding represented more than 45 percent 
of all of the aid that community college students received. 
More than one in every five credit students receives a Pell 
Grant.
    It is essential that Congress provide steady increases for 
the Pell Grant maximum. The maximum has lost more than 8 
percent due to inflation over the last ten years, and more than 
25 percent over the last twenty years. One unfortunate by-
product is the sky-rocketing student indebtedness, even for 
community college students who traditionally are steered away 
from student loans.
    The Administration's proposed $125 increase in the maximum 
grant for next year is unacceptable. Given program surpluses, 
it represents a $241 million cut in the funding from last year.
    Secondly, we ask you to fund the new Child Care Access 
Program at $45 million. The Child Care Program provides a great 
opportunity to help low income students get the college 
education that they need, and most importantly, to stay 
enrolled. The program focuses on needy students, but it gives 
our colleges flexibility to serve other students as well.
    The huge need for this program will soon be demonstrated in 
the form of hundreds of applications for these limited funds. 
We cannot understand why the President wants to freeze funding 
for next year.
    Third, we ask you to provide $80 million for the 
Strengthening Institutions Program of Title III of HEA. The 
Strengthening Institutions Program provides desperately needed 
funds to institutions that have very scarce resources and that 
serve a large percentage of disadvantaged and minority 
students.
    The programs operating principle is to let colleges decide 
where the Federal funds can be used best, providing that the 
activities meet the Federal goals and survive fierce 
competition. In a typical grant competition, fewer than 15 
percent of the applicants actually receive an award. For years 
Strengthening Institutions has become criminally underfunded.
    Funding at $80 million will merely return us to fiscal year 
1995 level, where the President proposed a two-year phase-out, 
a policy that he later abandoned.
    And lastly, we request increased funding for the Carl D. 
Perkins Vocational and Technical Education Act by at least $125 
million. Substantial new Federal resources are needed to 
capitalize on last year's reauthorization of the Perkins Act. 
The new law enhances State and local flexibility by eliminating 
a number of pre-existing mandates and set asides. These are 
also strict performance standards. Community colleges also 
continue to strongly support the Tech-Prep Program.
    Almost half of the undergraduate students in the United 
States attend community colleges. And on behalf of our 
students, especially those students who cannot attend without 
student financial aid and these important support programs, I 
thank you for this opportunity to speak today. At our college, 
Prestonsburg Community College, our motto is dedicated to 
student success. I ask you to please help our students be 
successful. Thank you.
    [The prepared testimony of Dr. Deborah Floyd follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Miller. Dr. Floyd, thank you very much for being here 
today. As you heard from the testimony of the previous 
witnesses, we represent a wide range of very important areas of 
Federal Government programs, from the education efforts to the 
biomedical research. And so we have some tough choices. All 
good causes, but we have so much money and we have to figure 
out how to make it go as far as we can. But thank you for being 
here today and advocating this need. I have a very fine 
community college in my area and so I am very familiar with 
community college. Thank you.
    Dr. Floyd. Thank you very much.
    Mr. Miller. We will go slightly out of order because we 
have a Member of Congress who would like to introduce the next 
panel. And so Dr. Paula Butterfield, if you would not mind 
waiting, we will call on J.C. Watts, my colleague from Oklahoma 
and chairman of the Republican Conference.
                              ----------                              

                                           Thursday, April 15, 1999

                   POLYCYSTIC KIDNEY DISEASE RESEARCH


                               WITNESSES

DANIEL E. LARSON, PRESIDENT AND CEO, POLYCYSTIC KIDNEY RESEARCH 
    FOUNDATION
KEVIN GILBRIDE, OFFENSIVE COACH, PITTSBURGH STEELERS
    Mr. Miller. J.C., welcome. I think you will be introducing 
our next panel.
    Mr. Watts. Yes. Mr. Chairman, thank you very much. I am 
honored to be with you this morning. I have got a special treat 
today to be able to introduce a fellow that I spent a couple of 
years with in the Canadian Football League. As a matter of 
fact, he was my quarterback coach in Ottawa in the Canadian 
Football League. He called me last week and told me that he was 
going to be in town today, and we were able to get together 
last night and break bread together and say hello and chat a 
little bit. And so I am honored to be here today to introduce 
him.
    Pardon me if I call him coach instead of Kevin. Coach 
Gilbride is offensive coordinator for the Pittsburgh Steelers. 
He just got that job I guess a couple of months ago. He is here 
today to testify concerning polycystic kidney disease, PKD. It 
causes kidneys to be infected with fluid-filled cyst causing 
kidney failure that can prove fatal. It affects approximately 
600,000 Americans, more than cystic fibrosis, sickle cell 
anemia, muscular dystrophy, and Down Syndrome combined. It 
touches both men and women regardless of age, race, or ethnic 
origin.
    Scientists believe that, with the appropriate funding, we 
are within five years of finding a treatment and cure for PKD. 
The Republican Congress, Mr. Chairman, I am proud to say that 
we have increased funding more medical research at the National 
Institutes of Health, and this year's budget includes an 
additional $2 billion in research investment above the 
President's request.
    Coach Gilbride's father died of PKD at the age of 45, and 
the disease runs rampant through his family. Every day PKD 
kills men, women, and children in the United States and it 
causes kidney failure for another 8 million Americans.
    And with that, Mr. Chairman, I want to present to you my 
former coach and my friend and now the offensive coordinator 
for the Pittsburgh Steelers, which is not good for your Miami 
Dolphins or the Jacksonville Jaguars, the Dallas Cowboys--
    Mr. Miller. Tampa Bay Bucs.
    Mr. Watts. Or the Tampa Bay Buccaneers. But my former coach 
and my friend, Coach Gilbride.
    Mr. Miller. We have the Pittsburgh Pirates in my hometown 
of Bradenton, that is where they winter.
    Thank you very much, J.C. He is one of our most popular 
Members in the House of Representatives. You did a very fine 
job last night too, by the way.
    Mr. Watts. Thank you.
    Mr. Miller. We are just delighted to call him our friend 
and colleague here.
    So, welcome, and Mr. Larson.
    Mr. Larson. Thank you, Mr. Miller. Nice to be hereagain. My 
name is Dan Larson. I serve as the president/CEO of the Polycystic 
Kidney Research Foundation, the only organization worldwide 
representing 12.5 million people who have an inheritance they do not 
want and cannot give back. These men, women, and children are the 
unfortunate ones who have been given a genetic bequest in the form of 
polycystic kidney disease, or PKD, the most common life-threatening 
genetic disease.
    Congressman Watts referenced the prevalence of PKD, so I 
will not repeat that. But seated next to me is Coach Gilbride, 
the recent head coach of the San Diego Chargers and now the 
current offensive coordinator for the Steelers, and he is one 
who knows all too well the devastating effects of this disease.
    Coach Gilbride?
    Mr. Gilbride. Thank you. He has come a long way from the 
Ottawa Rough Riders. And I have to appreciate Dan saying recent 
head coach. That means I got fired. [Laughter.]
    Mr. Gilbride. But Mr. Chairman and members of the 
subcommittee, please excuse the formality and certainly the 
personal nature of this appeal. However, the importance of my 
request demands a propriety I will endeavor to honor while I 
undertake the crucial task and humble task of asking for your 
help.
    I come forward today only through my very strong personal 
connection to this devastating disease. Polycystic kidneys, 
unfortunately, runs rampant through my family. My father died 
of it at the age of 45. He left my mom and seven children to 
fend for ourselves. Unfortunately, the youngest four, we always 
blame my mother and say she got weaker as she went along, 
inherited the disease, all of which were deprived of my dad's 
support, counsel, and love.
    My dad was a high school teacher and football coach, a 
great father, a tremendous role model. He had great impact in 
the community, influenced I cannot tell you how many lives, how 
many people he straightened out. And much to his chagrin, I 
followed in his footsteps and became a coach. As the oldest, I 
was able to benefit from his wise counsel before he died. 
However, his untimely death cast me into the role of being the 
surrogate father, a role I was woefully inadequately prepared 
to handle, and it stole from my siblings his guidance, care, 
and support.
    I have also witnessed my grandmother and an aunt die due to 
polycystic kidneys, and I have also watched my uncle and two 
cousins go through the very painful rigors of dialysis and the 
anxiety of waiting for a kidney transplant, something my four 
brothers and sisters are just about to enter into.
    As depicted in the picture of the cover of the statement in 
your packet, my family members with polycystic kidneys have 
kidneys that have been invaded by hundreds of fluid-filled 
cysts which cause kidney failure for almost all that are 
afflicted. It strikes children at birth, which is almost always 
fatal, as well as adults in the prime of their life, like my 
father, as J.C. mentioned, regardless of age, gender, 
geographic location, or race.
    Only through the vagaries of life, I have been spared the 
curse of inheriting the polycystic kidneys. And since I have 
had the good fortune to be in a profession that affords modest 
notoriety, sometimes more notoriety than I wish I received, I 
am glad to help acquaint the public and those of you who are 
burdened with making choices, with legislative responsibility 
about PKD to whatever extent I can.
    I come before you today to appeal to your humanity, your 
logic, and your business sense, and here is why. As was 
mentioned, every single day people die in the United States 
directly from polycystic kidneys and eight others have kidney 
failure. Just something that makes sense, getting the most out 
of your money.
    As in a recent visit, Dr. Harold Varmus with Congressman 
Bilirakis of Florida, the NIH director noted that the growth of 
knowledge regarding this disease has been exponential. In the 
last two years, dramatic progress has been witnessed in the 
understanding of the cause, the development, and the clinical 
course of PKD. Furthermore, in a recent NIH strategy meeting in 
which the top PKD scientific experts charted the research 
agenda for PKD, a doable plan was formulated leading to a 
treatment which will soon stop or significantly control PKD. 
Experts predict in as few as five years. So we have made the 
home turn, we are just looking for the fuel to get across the 
finish line.
    PKD costs the Federal Government $1.5 billion every year 
annually through Medicare and Medicaid payments for dialysis, 
kidney transplants, and related treatments for end-stage renal 
disease, which is the fastest growing portion of the Medicare 
budget. However, we only devote the insufficient fund of $10 
million for the research. So here we are closing in on it and 
we are spending $10 million to get the answer and we are 
spending $1.5 billion per year for treatment of it. It just 
does not make sense to an outsider.
    In spite of this directive and a notable therapeutic 
opportunity to redouble the efforts for PKD, a directive that 
has been essentially unheeded for far too long, in light of 
this suffering, death, and cost generated by this disease, and 
a small NIH research portfolio for PKD juxtaposed against this 
unprecedented scientific momentum and the imminent opportunity 
to develop a treatment and eventual cure for PKD, the 
conservative amount of $9 million as a net gain in the year 
2000 is needed to fulfill the scientific plan referenced above, 
the details of which are contained in the attached materials.
    Current and future generations of families like mine and 
millions of PKD families worldwide need the assurance that we 
will win out over PKD sooner and not later. My four brothers 
and sisters made sure that I mentioned that before I came here. 
For without a significantly increased effort for PKD, victory 
will be too late for far too many people, like it was for my 
father. Therefore I implore you to act decisively to end this 
scourge once and for all. Thank you.
    Mr. Larson. Thank you, Mr. Chairman, for your support in 
past research efforts, for your concern over the many PKD 
constituents in your district. Every district in America has 
roughly 1,300 people that have this disease, and so there are 
people that you rub shoulders with every day who have this 
disease. Thank you for the chance you have given us here today 
to convey our story and to ask you for continued help for a 
disease that is more prevalent than most of the well-known ones 
combined yet is not well-known to many people who support 
expanded research. We are grateful for the chance to be here.
    [The prepared testimony of Daniel E. Larson follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Miller. Thank you very much for being here. I am glad 
to see, Coach, you are taking an active role to advocate this 
and to bring it to the attention of the subcommittee, but also 
I think the more you can bring it to the attention of NIH, 
which is one of the crown jewels of our Government that so few 
people really understand in this country, you can help 
contribute to that, just as J.C. is making that great 
contribution to the Congress. Thank you all very much for being 
here.
                              ----------                              

                                          Thursday, April 15, 1999.

                           EDUCATION FUNDING


                                WITNESS

PAULA C. BUTTERFIELD, CHAIR, COMMITTEE ON FEDERAL POLICY AND 
    LEGISLATION
    Mr. Miller. Next we have Dr. Paula C. Butterfield. Dr. 
Butterfield, I hope you did not mind going a little bit out of 
order. But welcome. You have come a long way from Bozeman, 
Montana.
    Dr. Butterfield. Where we don't have any professional 
football teams. [Laughter.]
    Mr. Miller. Welcome.
    Dr. Butterfield. Mr. Miller, my name is Dr. Butterfield. I 
am superintendent of Bozeman public schools in Bozeman, 
Montana, where a river does run through it. I am here today 
representing the American Association of School Administrators, 
for which I chair the Committee on Federal Policy and 
Legislation.
    My school district in Bozeman, Montana, consists of 5,100 
students. This puts us in the top 12 percent of all districts 
in the United States in spite of that what would seem small 
student enrollment. Only 216 districts in the country enroll 
more than 25,000 students. And so although Bozeman is small and 
rural, we do represent the typical American school district.
    My colleagues and I at AASA have a short, simple message 
regarding Federal funds for education. First, make your highest 
priority to put new money in schools where poor children are 
concentrated, make funding of IDEA your second highest 
priority, and third, fund a new program specifically for 
districts that are too small and too rural to be sufficiently 
served by current Federal formula.
    Our first priority is Title I. Title I should be increased 
to $1 billion per year to assist the 9 million poor students 
who are eligible but unserved. Empirically, when 50 percent or 
more of the children in a school are below the poverty 
threshold, the entire school suffers. This means that everyone 
regardless of family income is brought down. If we expect any 
significant gains in student achievement levels, we must target 
concentrated poverty.
    In contrast, thanks to Title I, the Federal Government 
targets $4.73 for every $1 spent on K-12 education. The Federal 
Government and Title I are the last best hope for poor 
children. Title I services often prevent students from entering 
and needing IDEA services. In schools where Title I funding has 
been eliminated, there are no support services for students 
that fall between the general education and special education 
programs. Thus, we see a significant increase in the number of 
student referrals to special education in high poverty schools. 
In my district, when Title I funds were taken away from one 
school special education referrals tripled. Special education 
costs 2.5 times as much as regular education.
    There are 9 million more eligible children all handicapped 
by inequalities of poverty and yet unassisted and struggling 
through school without special help. This is why we need more 
money in Title I. Congressional Research Service estimates that 
the full funding of Title I would require at least $7 billion 
more. It would cost as much as $24 billion.
    AASA recommends that Congress commit to increasing Title I 
funding at $1 billion per year until every child is served. The 
increase may seem expensive--I know it is expensive--but it 
would provide many children attending schools with concentrated 
poverty their only opportunity for equal education.
    Our second highest priority is IDEA. The Federal Government 
has been promising for 24 years to alleviate the financial 
strain imposed by IDEA by providing 40 percent of necessary 
funding. On average, it cost $7,000 more to educate a special 
education student than it does to teach a student in general 
enrollment.
    I have provided the committee with a chart that shows the 
Bozeman schools and our historical pattern of special education 
funding. What these charts and graphs show so dramatically is 
that the fastest growing part of our local budget is special 
education. The local contributions have skyrocketed while the 
State and Federal lines are basically flat. This has 
contributed to the need to close a verypopular school and to 
cut budgets in our district that do not have the power of Federal 
mandate, mandates that are for the most part unfunded. The result is a 
growing resentment in our community, as well as many communities across 
the Nation, when parents see class sizes increasing in regular 
education classes and precious few extra resources for our most gifted 
and talented students.
    The Federal share is minimal. The Federal Government pays 
for 11 percent of the overall cost to educate our special needs 
children, or about $702. School districts have to pick up the 
remaining $35 billion tab for IDEA. It is the single largest 
constraint on our budgets. IDEA has become such a financial 
strain that the share of public school budgets devoted to 
regular education declined from 80 percent in 1967 to 58.6 
percent in 1996 nationwide.
    Our request is that we will continue to ask for a $1 
billion increase each year until the Federal commitment to IDEA 
is realized. Not only will $1 billion bring Congress closer to 
its original promise, it will allow school districts more 
flexibility.
    And finally, our last request is that we urge you to fund a 
greatly improved program for small rural schools under Title 
10. Because these schools frequently have fewer than 600 
students, they do not fit into the other formula programs. We 
would like to see one program with one set of rules and one 
source of funding.
    My message today on Title I and IDEA and small rural 
schools initiative is this, Congress should not fund any 
employment programs or poor professional practices with Federal 
dollars. Last year this committee took a bold step and funded 
the whole school reform provision of Title I in ESEA. The Obey-
Porter bill attached real accountability measures to Federal 
funds. It did so with the presumption that teachers and 
principals should jointly plan instructional/organizational 
strategies choosing among programs that have firm basis in 
research and practice. We think that Congress should inject 
this thinking into all of Title I, IDEA, and new small rural 
programs. Thank you, Mr. Miller.
    [The prepared testimony of Paula C. Butterfield follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Miller. Thank you very much, Dr. Butterfield. As you 
know, Title I is being reauthorized this year so that is going 
to be the big challenge for Congress is to pass that 
legislation. There is concern, as you know, that sometimes we 
treat these boutique education programs and programs such as 
IDEA and Title I is where we should really target our money 
rather than the other specialize programs. So I appreciate your 
comments. Thank you very much for being here.
                              ----------                              

                                          Thursday, April 15, 1999.

                     NURSING RESEARCH AND EDUCATION


                                WITNESS

MARY NAYLOR, RN, AMERICAN ASSOCIATION OF COLLEGES OF NURSING
    Mr. Miller. We now have Dr. Mary Naylor. Have you been here 
all morning?
    Dr. Naylor. I have indeed.
    Mr. Miller. You have heard a wide range of subjects we 
cover in this particular committee.
    My mother who passed away last year was a nurse. So I grew 
up with a working mother. She was back in the old days of 
nursing when they went to the hospital school programs back in 
the 1930s and such.
    Dr. Naylor. These have been compelling stories. And nurses 
have been involved in all the issues and problems and 
conditions that many of the people here today have talked 
about. So you are in good company.
    Mr. Miller. Thank you. Welcome.
    Dr. Naylor. I am Dr. Mary Naylor, associate professor at 
the University of Pennsylvania School of Nursing. Today I am 
presenting the fiscal year 2000 appropriation recommendations 
of the American Association of Colleges of Nursing for nursing 
research and education.
    AACN represents over 530 baccalaureate and graduate nursing 
education programs in senior colleges and universities 
throughout the United States. First, I want to thank you and 
the members of the subcommittee for fiscal year 1999 funding 
levels for nursing research and education. These needed funds 
are being well-spent to improve the health of the public. For 
fiscal year 2000 AACN recommends that the funding for the 
National Institute of Nursing Research increase by $18.5 
million over the Administration's fiscal year 2000 budget, to 
$90.2 million, the professional judgement budget.
    For the Agency for Health Care Policy and Research, AACN 
asks for funding of $188 million.
    For the Nursing Education Act, AACN respectfully requests 
an increase to $74.6 million.
    For scholarships for disadvantaged students, we seek an 
increase to $21.3 million.
    AACN endorses the recommendation of the 15 percent increase 
for NIH in fiscal year 2000 made by the Ad Hoc Group for 
Medical Research Funding. AACN agrees with the recommendation 
of the Health Professions and Nursing Education Coalition of 
$360 million for Public Health Service Act Titles 7 and 8.
    AACN also advocates appropriate funding levels for the 
Higher Education Act programs that serve nursing students at 
the undergraduate and graduate levels, such as Pell Grants, 
Perkins loans, and Federal Work-Study.
    Mr. Chairman, the profession of nursing and the research 
findings of its scholars are relevant to virtually every 
citizen of the United States and for every health problem for 
which our system provides care. I would like to share with you 
the ways in which my own program of research funded by the 
National Institute for Nursing Research has demonstrated great 
potential to improve the health outcomes of elders while saving 
valuable Medicare dollars.
    For the past decade, it has been my great fortune to lead 
an extraordinary research team comprised of nurses and 
physicians, scholars and clinicians, and health care economists 
who share my commitment to advance through science quality 
affordable health care for our Nation's most vulnerable elders. 
Recently my research team completed our second NINR-funded 
randomized clinical trial. We tested a model of care which we 
call transitional care designed for elders who are hospitalized 
with common but complex medical and surgical problems and known 
to be at high risk for poor post-discharge outcomes. In this 
study, masters-prepared nurses, in collaboration with patient's 
physicians, assumed full responsibility for discharge planning 
and home follow-up of these patients and their families. In 
addition to delivering expert care, these nurses were the point 
persons and the brokers of care during patients difficult 
transitions from hospital to home.
    The results of this study have very important policy and 
clinical implications. At six months after the index hospital 
discharge, the intervention group has significantly fewer 
hospital readmissions, fewer hospital days per patients, and 
fewer of these patients had multiple readmissions. The cost of 
post-discharge health services for the patients in the 
intervention group was approximately $600,000 lower than the 
control group, representing a mean per patient savings of 
almost $3,000. And we only followed them for six months after 
discharge.
    When this is extrapolated to the numbers of patients 
admitted each year with these common medical and surgical 
problems the potential benefits and savings for the Medicare 
system are tremendous. This study was a lead article in the 
February 17 issue of the Journal of the American Medical 
Association. I know you will not be surprised to learn that 
there has been considerable interest and attention by health 
care providers, managed care systems, integrated health systems 
who are considering adoption of this model.
    Currently, with continued funding from NINR, we are testing 
this model of care with a group of elders suffering from heart 
failure, a major public health problem in the United States and 
the number one reason for hospitalizations of all adult patient 
groups. We have also begun to test this model of care with 
elders living with Alzheimer's disease, a condition which you 
heard from Maureen Reagan and which I personally know has 
devastating and profound effects on the lives of millions of 
individuals and their families.
    Without question, the success of the health care system in 
the 21st century will center on its ability to respond to the 
rapidly growing population of people of all ages who are coping 
with multiple serious chronic problems. Their illnesses are 
exacting a tremendous toll on them as individuals, on their 
families, and on society in terms of health resource 
consumption. NINR is committed to playing a leadership role in 
developing the answers to the significant issues we face in 
trying to respond to these challenges. And that is a challenge 
that will ultimately benefit each and every one of us. Thank 
you so much for your time.
    [The prepared testimony of Mary Naylor follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Miller. Thank you for coming down to Washington today 
and advocating and for sitting through the past two hours of 
presentations. You see a wide range of needs that we will try 
to meet as best we can.
    Dr. Naylor. Terrific. Thank you.
    Mr. Miller. Thank you very much.
    The subcommittee stands in recess until 2:00 o'clock.
                              ----------                              

                                          Thursday, April 15, 1999.

                       AMERICAN HEART ASSOCIATION


                                WITNESS

DR. ROBERT O. BONOW, M.D., CHAIR, COMMITTEE ON SCIENTIFIC SESSIONS 
    PROGRAM, AMERICAN HEART ASSOCIATION
    Mr. Porter [assuming chair]. The subcommittee will come to 
order.
    We continue our public witness hearing schedule this 
afternoon with our sixth panel of ten.
    We want to make this announcement. In order to accommodate 
as many members of the public as possible, we have scheduled 
over 20 witnesses for each session, and are still not able to 
hear from all who wanted to testify. Overall, we will hear from 
over 200 witnesses in these public witness segments.
    As a result, I have to strictly enforce the rule limiting 
testimony to five minutes. I would ask that as you testify, you 
keep this limitation in mind in consideration of the other 
witnesses that must follow you.
    Our first witness this afternoon is Dr. Robert O. Bonow, 
M.D., Chair, Committee on Scientific Sessions Program, Vice 
Chair of the Council on Clinical Cardiology Officers, and a 
member of the Science Advisory and Coordinating Committee of 
the American Heart Association, testifying in behalf of the 
Association.
    Dr. Bonow?
    Dr. Bonow. Thank you, Mr. Porter.
    My name is Robert Bonow, I am a national volunteer for the 
American Heart Association. I am also chief of cardiology at 
Northwestern University Medical School and a resident of 
Glencoe, Illinois.
    I would like to speak with you today about heart disease, 
stroke and other cardiovascular diseases. Cardiovascular 
disease remains America's number one killer and accounts for 
nearly half of all deaths in this country. The AHA commends you 
for your strong championship of NIH and CDC. But we believe 
that greater resources should be devoted to research and 
prevention of heart disease, America's number one killer, and 
stroke, our number three killer, and leading cause of 
disability.
    Now is the time to capitalize on remarkable progress that 
has placed promising, cost-effective breakthroughs on the 
horizon, with the potential to reduce health care costs and 
improve the quality of life for all Americans. We urge you to 
take three steps for fiscal year 2000.
    First, appropriate a 15 percent increase in funding for 
NIH, the next increment toward doubling the budget by the year 
2003. This goal is also endorsed by Research America and the Ad 
Hoc group for Medical Research Funding.
    Second, provide a 15 percent increase over fiscal year 1999 
funding specifically for NIH heart research and stroke 
research. Third, appropriate $45,000,000 for CDC's 
cardiovascular health program.
    Thanks to advances in treatment and prevention, more 
Americans are surviving heart attack and stroke. No longer do 
these conditions necessarily mean immediate death. But they can 
still mean permanent disability, requiring costly medical care 
and loss of productivity and quality of life.
    Research has produced the first effective emergency 
treatment for stroke, for example. The clot busting stroke 
drug, TPA, can stop a stroke in progress and reduce permanent 
disability when used within the first three hours of symptoms. 
TPA could be a miracle drug, benefitting 450,000 Americans at 
risk of a clot-related stroke each year.
    However, this is not happening. Often, people do not 
recognize symptoms and do not get to the hospital in time. And 
many health care providers do not treat stroke as an emergency. 
Patients would also benefit from improved imaging technology to 
diagnose stroke more quickly.
    For TPA to live up to its fullest potential, and to find 
new ways to fight stroke, funds must be invested in cutting 
edge research.
    Congestive heart failure afflicts nearly five million 
Americans, and is the number one cause of hospitalization for 
patients over 65. This disabling condition has become more 
prevalent, because thanks to research, more people are 
surviving heart attacks and living with damaged hearts, only to 
develop heart failure over the next few years. Heart failure is 
a horrible disease. Fifty percent of patients die in five 
years, and for many, relatively simple tasks likemaking the bed 
or preparing for breakfast, can be so fatiguing that the remainder of 
the day is spent resting. For some patients, only a heart transplant 
can curtail suffering or postpone death. Funds to study promising new 
medical and surgical treatments, including mechanical assist devices, 
could mean a new lease on life for millions of Americans.
    In the next century, many of the 21 million Americans with 
heart disease may be treated routinely with a genetic 
engineered therapy that stimulates the growth of new heart 
blood vessels, which helps restore blood flow to the heart in 
which arteries are obstructed by fatty plaques. This exciting 
new technique, called angiogenesis, could provide an 
alternative or an adjunct for over 800,000 Americans who 
require bypass surgery and angioplasty each year to restore 
blood supply to the heart. But more funding is needed to 
translate our current knowledge of angiogenesis into pre-
clinical studies and clinical applications.
    One of the biggest myths among Americans, including women 
and doctors, is that heart attack, stroke and other 
cardiovascular diseases affect only men. In fact, 
cardiovascular disease kills more women than men, and kills 
more women than the next 16 major causes of death combined. 
Thanks to the inclusion of the Women's Cardiovascular Disease 
Research and Prevention Act in P.L. 105-340, the Women's Health 
and Research Prevention Amendments, this myth could change. But 
funding is needed to implement authorization provisions of the 
law, calling on NHLBI to expand research in this area and to 
create informational and educational programs for women and 
health care providers on cardiovascular disease risk factors.
    Research results must find their way into the communities 
where heart attack and stroke inflict their damage. CDC works 
to build that bridge, and this has been enhanced through the 
creation of the CDC cardiovascular health program. Thanks to 
your support, eight States are now receiving funds to begin 
this comprehensive prevention and control program.
    A fiscal year 2000 appropriation of $45,000,000 will allow 
expanded outreach of these prevention programs to many 
additional States. Increasing resources for both research and 
community intervention programs will lead to great strides 
against heart attack, stroke and cardiovascular diseases. This 
could mean the difference between life or death for you, me, 
and our loved ones.
    Thank you very much.
    [The prepared testimony of Dr. Robert O. Bonow follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. Thank you, Dr. Bonow.
    You are my constituent. You do your work at my alma mater, 
Northwestern University, so I am going to step on your time 
just a little bit here, with your permission, and give my 
sermonette at the time of the first witness. My sermonette is 
that we have yesterday completed the budget conference report. 
We expect to have allocations by next week. The allocation is 
the pool of money that I have to fund discretionary programs 
under the jurisdiction of the subcommittee.
    This applies to all witnesses, regardless, for those who 
want increased funding in any area. I have never found a 
witness to come in here to say they wanted decreased funding.
    But we are going to have a very tough time, because the 
budget resolution leaves the caps in place. Last year, as a 
result of the negotiations at the end of the year, where a 
number of items were declared emergencies, where others were 
forward funded, we are spending right now, this fiscal year, 
about $20,000,000,000 above the caps. What that means is that 
if we are going to stay within the caps in the next fiscal 
year, we are going to have to make $20,000,000,000 worth of 
cuts from where we are.
    I have to tell you that not many members that I know in 
Congress believe that that is where we will end up. But we are 
going to have to fashion appropriation bills and put them out 
on the Floor and get them passed somehow that live within the 
budgetary caps. Things are going to be very, very difficult.
    I would advise each of you to look not at the short term, 
but look at the process and how it is going to have some ups 
and downs, is what I am saying. I think in the end we will make 
the relatively small adjustment, when you say $20,000,000,000, 
that is a lot of money. The President proposes to spend 
$13,000,000,000 above that. So that is $33,000,000,000.
    But even if you look at that figure on the basis of an 
$1,800,000,000,000 budget, you are talking about one and a half 
or two percentage points, and I think probably, given the 
situation, particularly in respect to the need to support our 
armed forces in Kosovo, that we are going to make some 
adjustment at the end of the line that will slightly raise the 
caps and allow us to do some of the things that we believe 
ought to be done within the budget.
    But look at this thing in a context of final result and not 
necessarily at any point along the line. That is my sermonette 
for the day.
    Let me ask you, to see if I can get free medical advice 
here, it has recently been said, you are a cardiologist, it is 
recently been said that if you are experiencing the symptoms of 
a heart attack or stroke, one of the good things you can do is 
take a single aspirin. Does that have the same good effect if 
you are having a stroke as it does when you are having a heart 
attack?
    Dr. Bonow. It may not in the case of a stroke. It depends 
on the cause of the stroke. Some strokes are caused by bleeding 
in the brain.
    Mr. Porter. Would it hurt, then?
    Dr. Bonow. In that case, aspirin would be exactly the wrong 
drug. In the case of a heart attack, it is never bleeding, it 
is the clot. Some strokes are caused by clots that embolize 
through the brain and do not cause bleeding. Some strokes are 
caused by hemorrhage, in which case aspirin could make that 
worse. So aspirin should be given for a patient, what we 
recommend is to all citizens to do so if they are having chest 
pains, and think they are having a heart attack. If they think 
they are having a stroke, the best thing to do is seek 
immediate medical advice.
    Mr. Porter. And not take aspirin?
    Dr. Bonow. Not take aspirin. No.
    Mr. Porter. Thank you for that free medical advice. Thank 
you, Dr. Bonow.
                              ----------                              

                                          Thursday, April 15, 1999.

                      AMERICAN DENTAL ASSOCIATION


                                 WITNESS

S. TIMOTHY ROSE, DDS, PRESIDENT, AMERICAN DENTAL ASSOCIATION
    Mr. Porter. Our next witness is Dr. S. Timothy Rose, M.S., 
DDS, President of the American Dental Association.
    Dr. Rose. Mr. Chairman, thank you very much for this 
opportunity to testify today on behalf of the American Dental 
Association. I am Dr. Tim Rose, I am the President of the 
American Dental Association, and I want to thank you personally 
for initiating the process to rename the National Dental 
Institute last year to the National Institute of Dental and 
Craniofacial Research. We think that is a major step forward.
    To begin, I would like to say that I appreciate the 
committee's continuing recognition of the importance of dental 
research and federally funded dental programs to improve the 
oral health of all Americans. As a practicing periodontist, I 
am especially aware of the importance of dental research and 
how such activities affect oral health and the general well-
being of the American people.
    In fact, studies are increasingly finding that certain oral 
diseases may affect a number of systemic diseases. As an 
example, people are now suggesting that periodontitis may 
contribute to cardiovascular disease, pulmonary disease and 
osteoporosis. Evidence is also mounting that suggests 
periodontal disease may be a risk factor in low birth weight 
infants and premature births. Pregnant women who have severe 
periodontal disease may be seven times more likely to have 
babies that are born too early or too small.
    We have known for years that people with uncontrolled 
diabetes are more likely to have periodontal disease. 
Conversely, recent research suggests that periodontal disease 
may make a difference for people who have diabetes and their 
ability to control their diabetes. A study funded by the 
National Institute of Dental and Craniofacial Research revealed 
that controlling of a diabetic's periodontal disease may 
significantly help them control their diabetes.
    Mr. Chairman, members of the committee, 85 percent of all 
dental research done in this country today is done through the 
NIDCR. In order to understand further the connection between 
periodontal disease and these other life-threatening diseases, 
it is vital that NIDCR be funded at a level that will allow 
this advanced research to continue.
    The Association requests that NIDCR be funded at the 
$276,000,000 level.
    Dental research is only one piece of the puzzle that needs 
to be solved to deliver quality oral health care to the 
American public. The CDC's Division of Oral Health applies this 
research to develop public health programs, such as community 
water fluoridation, that clearly improve the oral health of all 
Americans. The ADA appreciates the committee's support last 
year for increasing the funding for water fluoridation in this 
country. We believe that this federally funded program is truly 
cost effective and an investment in the oral health of the 
American public.
    It has been estimated that the approximate cost of 
providing water fluoridation for one individual for a lifetime 
is less than the cost of one dental filling. However, 
currently, just over 62 percent of all Americans have access to 
community water fluoridation.
    Much of the surveillance research conducted by the Division 
of Oral Health is designed to help States and local communities 
understand the existing oral disease in their area. Research 
conducted in the State of Louisiana shows the importance of 
delivering services in a dental office setting. Medicaid costs 
associated with hospitalizing children for treatment of dental 
decay and infection range from $1,500 to $3,000 per visit. This 
is 15 times greater than the cost of delivering the same 
services in a non-emergency setting in a dental office.
    This research will be used by other States to address 
similar situations that will lead to even broader Medicaid 
savings. To continue this type of research and the water 
fluoridation efforts, the Association requests the Division of 
Oral Health be funded at the $10,000,000 level.
    The ADA also supports the general dentistry residency 
program, which provides advanced training for general dentists. 
Eighty-seven percent of the dentists who receive this advanced 
training remain as primary care providers. Thirty percent 
continue to practice in underserved communities. They treat 4 
times as many disabled patients as a dentist who has not 
received this training, 6 times as many medically compromised 
patients, and 26 times as many patients that have HIV and AIDS 
disease.
    The ADA recommends that the $132,400,000 million in the 
primary cluster to ensure the $8,000,000 that is made available 
for general dentistry and pediatric dentistry residence 
programs be retained.
    Continuing Federal support for the Ryan White program means 
that individuals living with HIV and AIDS will continue to 
receive access to oral health care that addresses their very 
special needs. Last year alone, the Ryan White program helped 
pay for the oral health care for 66,000 American patients 
treated in 101 different dental education programs.
    While new age treatment drugs may decrease many of the oral 
manifestations associated with AIDS, we are now seeing some new 
and different problems in these patients. Many of these 
patients now experience zeroxomia, a dry mouth situation, which 
leads to increased tooth decay. Severe zeroxomia is also a 
primary quality of life issue, and can make swallowing, 
speaking and even eating almost impossible.
    The ADA respectfully requests that the total of $9,000,000 
for the Ryan White HIV dental reimbursement program be the same 
as the President has requested.
    Mr. Chairman and members of the committee, time does not 
permit me to go further into detail about the Federal dental 
programs that are in our written statement. I would just like 
to suggest to you that they are all equally important to all 
American citizens. Thank you for listening to the American 
Dental Association's concerns, and we want you to know that we 
are unequivocally committed to delivering and improving the 
oral health care status of all Americans.
    Thank you very much.
    [The prepared testimony of S. Timothy Rose follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. Dr. Rose, thank you for your statement. It is 
often said that the research that is done through NIH does not 
do any good unless it gets out to the practitioners in the 
field. What does the ADA do to disseminate that kind of 
information, or what mechanisms are there within the dental 
profession for that kind of dissemination, so that a dentist in 
Chicago might know the latest information?
    Dr. Rose. You may know that the American Dental Association 
represents almost 80 percent of the practicing dentists in the 
United States. The two publications of the American Dental 
Association, the Journal of the American Dental Association and 
the ADA News, are the two most widely read dental publications 
in the world. All of these advances and changes in science and 
new technology are published in those journals and other 
journals that dentists read.
    We also now have a first-class web page, where all of this 
stuff appears almost instantaneously. We are now taking in 
excess of 100,000 hits a day on the web page.
    Mr. Porter. Thank you so much for your testimony this 
afternoon.
                              ----------                              

                                          Thursday, April 15, 1999.

                     AMERICAN DIABETES ASSOCIATION


                                WITNESS

DORIS GILBERT, VOLUNTEER/ADVOCATE, AMERICAN DIABETES ASSOCIATION
    Mr. Porter. Our next witness is Doris Gilbert, Volunteer 
Advocate for the American Diabetes Association.
    Ms. Gilbert. Chairman Porter, I am Doris Gilbert, and I 
thank you for having us here on behalf of the American Diabetes 
Association to tell about our families' experiences with 
diabetes.
    This is my husband Dunham and my daughter Allison. 
Seventeen thousand shots. That is how many insulin injections 
my child took to stay alive, starting at age six. It did not 
save her. At 28, Laurie was dead from complications of 22 years 
of diabetes.
    What is diabetes anyway? It is a long term complication in 
which, if you take your insulin shots, or for adult diabetes, 
follow your diet and if necessary, take medication, you will be 
fine, right? Wrong. At diagnosis we learned the techniques and 
were told that Laurie could live a normal life. We thought, 
being responsible parents, we will handle this, it will be 
fine.
    It just did not end up that way. What is it like for a 
parent living with a child with diabetes? At seven, I had to 
comfort Laurie when her close friend told her she could not 
invite her to her birthday party because, you might feel bad 
since you cannot have cake, or you might get sick or something. 
There was always an undercurrent of fear that she would have a 
sudden, disabling low blood sugar reaction while alone.
    At 12, she had numerous hospitalizations. Parents expect 
their children to get sick, and then to get better. And that is 
the way it always was. But once, she was rushed to intensive 
care, and I remember staring out of the window, confronting for 
the first time that our child might die.
    In her late teens, she suffered from severe retinopathy, 
one of the common long term complications which can lead to 
blindness. Once I watched the anesthetic preparation for a 
large amount of laser surgery. That one and a half inch needle 
looked six inches to me, and seeing it stuck in her eye made me 
cry.
    What was Laurie like? She passionately wanted to make a 
difference in the world. She was an original, unforgettable. 
The creative urge enveloped her, and she pursued her passions 
voraciously, finding a voice to speak to the world.
    In high school, the discovery of art photography thrilled 
her. In college, she wrote, published, directed, acted, 
devouring every opportunity she could, graduating with a degree 
in art and theater. She was sensitive, emotional, loving, 
insightful, a little outrageous, charismatic. She made us 
laugh.
    At 22, the long term complications of diabetes began to 
become pronounced, and initiated a protracted, miserable 
deterioration of health in the last five years. Each year's 
birthday message was a variation on a theme. At first, we are 
sure this will be a better year for you. Later, we hope. It 
never was.
    Being admitted to the graduate program in screen writing at 
UCLA realized a dream. The quarter began and she lay in the 
hospital. Then she struggled to catch up. Increasingly, she 
suffered from retinopathy, neuropathy, kidney and liver 
disease, severe hypertension, depression and worst of all, 
gastroparesis, for her extremely painful and utterly 
debilitating.
    Flare-up and hospitalizations happened over and over until 
she was just too ill to continue. Rather than give more 
depressing detail, I will let the hospital record tell the 
story.
    In 1995, 116 days in the hospital. In 1996, 156 days. In 
1997, she began the year in the hospital and never left alive. 
Twenty-eight years old. What a waste.
    Laurie wanted so to leave her mark on the world. If her 
story can convince Congress to firmly commit to improving and 
saving the lives of thousands of people like Laurie with 
diabetes through research, she will continue to make her aim to 
make a difference.
    On behalf of the Diabetes Association and Laurie Gilbert, 
we urge you to fully fund diabetes research this year at 
$826,000,000. Thank you.
    [The prepared statement of Doris Gilbert follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. Thank you, Ms. Gilbert. I think you have told 
us all a terrible story that we ought to hear. Many people, I 
think, think that diabetes is just a major inconvenience 
because you have to take some drugs and it is controllable. The 
fact is that there are others, many who die from this disease 
and die young from this disease.
    Ms. Gilbert. Right, in the prime of life.
    Mr. Porter. Others suffer throughout their time on earth, 
they suffer all kinds of terrible complications, from eye 
complications to kidney complications, they are on dialysis, 
have lost limbs and it is a terrible, terrible disease. My wife 
is diabetic, so I know something about it.
    Is there any history of diabetes in the family?
    Ms. Gilbert. Laurie was the first. Five years ago, I 
developed supposedly type 2 diabetes, adult onset. That is 
absolutely all. Nowhere else in the family.
    Mr. Porter. Nowhere else in the ancestors?
    Ms. Gilbert. Yes.
    Mr. Porter. Well, obviously we want to do what you want us 
to do. This Congress committed last year to doubling biomedical 
research over a five year period. We have also over the last 
four years or so gradually moved away from some of the diseases 
that were once very threatening and have been better controlled 
toward those diseases that affect broader populations and 
putting more money into research on heart disease, diabetes, 
diseases of aging, cancer and the like.
    We are going to do the best we can. You heard my 
sermonette. We are going to do the best we can to get where you 
want us to go and where many others want us to go. It is going 
to be a struggle, but I believe very strongly that if we can do 
this for the second year in a row, we can provide an increase 
of about 15 percent that the following three years will be 
much, much easier. I also believe it would be a disaster to 
ramp up and down. The President's budget proposes a 1.4 percent 
increase for biomedical research. That would be a disaster. You 
would begin a process of getting greater support for research 
and immediately pull it back. We cannot do that.
    So let me just say that we are going to do the very best we 
can. It is going to be very difficult to do, but I have hopes 
that we will get there, and we really thank you for coming to 
educate us and tell us about your daughter today. Thank you so 
much.
                              ----------                              

                                          Thursday, April 15, 1999.

                       AMERICAN LIVER ASSOCIATION


                                WITNESSES

 ALAN BROWNSTEIN, PRESIDENT, AMERICAN LIVER FOUNDATION
KATHLEEN HEALY, PRESIDENT, ILLINOIS CHAPTER OF THE AMERICAN LIVER 
    FOUNDATION
    Mr. Porter. The next witness is Alan Brownstein, President 
of the American Liver Foundation, accompanied by Kathleen 
Healy, the President of the Illinois Chapter of the American 
Liver Foundation. Ms. Healy, you are a Chicagoan, I understand?
    Ms. Healy. Pumwood.
    Mr. Porter. Pumwood, well, that is the Chicago area. 
Welcome to both of you.
    Mr. Brownstein. Good afternoon. Mr. Chairman, my name is 
Alan Brownstein. I am the President of the American Liver 
Foundation. Joining me here is Kathleen Healy, who is president 
of the Illinois Chapter of the American Liver Foundation. 
Together, we will limit our comments to five minutes.
    Mr. Chairman, the American Liver Foundation is a national 
voluntary health organization. Our mission is to prevent, treat 
and cure hepatitis and other liver diseases that affect 25 
million Americans through research and education. We have 30 
chapters nationwide, of which we are very proud of our Illinois 
chapter. We provide information to 300,000 patients and 
families as well as 70,000 physicians who are primary care 
physicians as well as specialists in liver diseases.
    The last page of the statement summarizes our 
recommendations concerning NIH, CDC and HRSA. But I wanted to 
share with you that broadly speaking, we are deeply concerned 
that the pace of NIH research funding for hepatitis C and other 
liver diseases has not kept pace with the challenges and 
scientific opportunities that we see today. While NIH grew 14.7 
percent last year, thanks to your support, liver disease 
research has not even grown at the rate of inflation, barely 2 
percent. For hepatitis, the increase was barely 4.9 percent. 
For hepatitis C, the proposed increase is only $2,700,000.
    And with 4 million people with hepatitis C, with chronic 
hepatitis C, this is for an infectious disease that is becoming 
and will be a major public health problem as we enter the 21st 
century. We know it needs to be done, and we need to commit the 
resources. We need to commit these resources, and we ask you, 
in any way you can, for your help before it is too late.
    Now I would like to turn over the rest of our comments, Mr. 
Chairman, to Kathleen Healy.
    Ms. Healy. Hello, Chairman Porter. I brought a visual. You 
know, as a retired teacher, you have to have a video, a picture 
or something. I brought this visual, and I will take my husband 
out of the picture. These are pictures of my sister who would 
have been 60 tomorrow, my other sister, myself and all of us 
have hepatitis C. My mother died of liver cancer, which is the 
ultimate end of hepatitis C, not knowing she had it. She died 
in October 1988. My dad had anautopsy done, wondering why she 
had liver cancer. They said it was non-A, non-B hepatitis. At that time 
they did not know about hepatitis C.
    So I just wanted to bring this to show you. My sister is 
under the new therapy, this is my sister Sunny right there, is 
under the new therapy for interferon and riboverin. My sister 
Arlene, the one that is the blonde, she died two years ago of 
two failed transplants. I am on a liver transplant list for my 
third year.
    I want to thank you for inviting us here, and I wanted you 
to see the visual.
    There are many programs and issues within this jurisdiction 
and this subcommittee that are important to the American Liver 
Foundation. As our time is limited, I am just going to focus in 
on hepatitis C. An estimated 10,000 people die each year from 
hepatitis C. The Center for Disease Control and Prevention 
projects that the death rate will triple by 2010, unless there 
is additional research and public health intervention.
    Clearly, the time for action is now. HCD, or hepatitis C, 
as it is called, rarely causes immediate illness. It is 
dormant, it might be diagnosed just by chance, you might be 
tired, do not know why you are tired. That is how it happened 
to me. All your liver enzymes are elevated.
    About 85 percent of the people develop this chronic 
infection. Without significant research and medical 
intervention, medical systems will be increasingly overcome by 
all these people, and the illness with hepatitis C. One of the 
biggest things with hepatitis C is transplantation, which is 
the ultimate if you do not have cancer. But anyway, as you 
know, organs are very hard to come by. I know the Government 
has spent $325,000,000 into the veterans hospitals, because 
18.5 percent of the veterans have hepatitis C, those that go to 
the VA hospitals. So they are spending a lot of money on the 
drug therapy, because they themselves know that there are not 
enough organs around.
    Because the three of us in our family have it, we are very 
involved, or I am very involved, I take it as my mission to 
educate people about this disease. It is very democratic, this 
disease, it covers all strata of society. As a matter of fact, 
when I heard the dental man, that is another way of sending it 
along, a toothbrush, sharing a toothpaste tube. So there are 
lots of ways that it can be transmitted.
    But I also wanted to state that all the money we have, 
which is not very much, I believe the President's budget for 
fiscal year 2000 is only $33,000,000 for research for just 
hepatitis C, I am not talking about the $79,000,000 for all the 
hepatitis research, but $33,000,000 in a time of epidemic, I do 
not like to use that word, but the large numbers of hepatitis C 
patients increasing, we have four patients for every one AIDS 
patient that has hepatitis C.
    So they have done all this tremendous research with the 
billions of dollars they have put into AIDS research. If we 
could have an increase in that budget for research for 
hepatitis C, we could be saving a lot of lives.
    Another thing I would like is research money for organ 
donation. People have a lot of fallacies about organ donation. 
They have to be educated as to the good it does. They have 
strange ideas about it. So the only way you can get to these 
people is through education, through releases.
    So this is why I am here, hoping one day I will have a 
liver. I do hope that you take this seriously. Thank you.
    [The prepared testimony of Alan Brownstein follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. We certainly take it very seriously.
    I am quite surprised about Mr. Brownstein's testimony, 
because when Dr. Fauci was here, as has been the case every 
year recently, he has made hepatitis of all types, but 
particularly hepatitis C, a very, very sharp focus at NIAID in 
his testimony. I know that they take it very seriously, and 
they are obviously anxious to find a way of unlocking the keys 
to it and preventing this disease.
    I am interested that a family like yours, all the daughters 
and your mother, were there any male children?
    Ms. Healy. No, no males. But there is a family at 
Northwestern where there were boys. So it does not matter.
    Mr. Porter. No, I would not think so.
    Ms. Healy. They believe that we all got it at an early age, 
from my mother, the birth canal at birthing. My mother was a 
teacher, my sister that died was a teacher. We did not lead 
lives that, you know, we do not drink or smoke and things like 
that. So fortunate for us, that has kept us here longer.
    But I do take good care of myself, and that is very 
important.
    Mr. Porter. Let me follow up by asking NIAID what their 
plans are and see if we can verify these numbers. Because I 
know they take this very, very seriously and put it at a very 
high priority within their jurisdiction.
    Mr. Brownstein. Mr. Porter, if I may, I just want to say 
that Dr. Fauci is definitely incredibly committed to this. It 
is the funding level, and I would like to submit a copy of the 
funding level of these institutes on hepatitis and liver 
disease for the record, if I may.
    Mr. Porter. The way the process works would not necessarily 
give you the result of what they have done very recently, 
though, because research is coded afterwards as to what its 
applicability is. They do not say, this is a hepatitis C 
protocol, where we are offering you a chance to do research in 
this area. They fund research and then see where it leads.
    So often, you may think research is being done in one area, 
and find that its applicability is in an entirely different 
area. So that data may represent what has been done in the past 
and completed and coded, rather than what has been done 
recently in terms of putting out money and hoping to find good 
research that would have applicability or hopefully have 
applicability to hepatitis.
    Mr. Brownstein. If I could just make one more comment on 
that, I think that is true, I understand your point. However, 
in 1997, there was a hepatitis C consensus conference. There 
were a number of recommendations that came out of that 
conference for research follow-up. The way in which the 
requests for proposals, they have not been structured to 
reflect those needs that were specifically identified. For 
example, Dr. Fauci organized the AIDS clinical trial group at 
NIAID. You need something like that for a hepatitis clinical 
trial group, which was sort of like, well, in fact it was 
recommended by the hepatitis C consensus conference.
    So I think that, what you are saying is absolutely correct, 
but I think we need to structure it so that the focus can be 
sharpened, if you will, in a business-like way, so that science 
can pursue its goals in a way that can best produce the results 
that we are seeking.
    Mr. Porter. Well, I certainly realize your concern in this 
area and the concern of others in other areas of research. The 
new recommendations of the IOM, the Institute of Medicine, 
about greater interaction between NIH and the advocacy groups 
like yours I think is going to lead to a lot more input and 
exchange of ideas and understanding of why they are proceeding 
the way they are. Sometimes there just is not available 
research that they feel will lead anywhere.
    But I think you will have a very good chance to have input 
to Dr. Fauci and in the processes as the study is being 
implemented, which is happening right now.
    Thank you both very much for coming to testify.
                              ----------                              

                                          Thursday, April 15, 1999.

                 NATIONAL COALITION FOR CANCER RESEARCH


                                WITNESS

LINDA BACHUS, EXECUTIVE DIRECTOR, CANCER RESEARCH FOUNDATION OF 
    AMERICA'S CONGRESSIONAL FAMILIES ACTION FOR CANCER AWARENESS
    Mr. Porter. Our next witness is Linda Bachus, the Executive 
Director of a member organization, the Cancer Research 
Foundation of America's Congressional Families Action for 
Cancer Awareness, and the wife of Spencer Bachus, the Sixth 
District of Alabama. Ms. Bachus, it is nice to see you.
    Ms. Bachus. Thank you very much.
    Mr. Porter. You are testifying in behalf of the National 
Coalition for Cancer Research.
    Ms. Bachus. Good afternoon. My name is Linda Bachus. I am 
here today representing Congressional Families Action for 
Cancer Awareness, The Cancer Research Foundation of America and 
the National Coalition for Cancer Research. Congressional 
Families Action for Cancer Awareness is a program of the Cancer 
Research Foundation. Our membership is composed of spouses of 
Congressmen and Senators and administration officials and our 
mission is to help educate the public about the need for early 
detection and prevention of cancer.
    We are a program of the Cancer Research Foundation, a 
foundation that supports research into cancer prevention and 
supports programs that provide education, treatment and 
screening services. CRFA is a member of the National Coalition 
for Cancer Research, which is comprised of 23 national research 
and lay advocacy organizations.
    I want to express our thanks to this subcommittee and your 
leadership, Chairman Porter, for the generous increase that you 
provided in last year's appropriations bill for the National 
Institutes of Health and the National Cancer Institute. Our 
goal is to bring the NCI budget up to $10,000,000,000 by 2004, 
and to double the NIH budget over five years. I am here today 
to request an increase that will keep pace toward this 
important goal in the fiscal year 2000 budget.
    I do not have to underscore the threat that cancer poses to 
our people. Over half a million Americans die from cancer each 
year. This is the equivalent of five jumbo jet airliners 
violently crashing every day for an entire year. Half of all 
American men will develop cancer during his lifetime, and fully 
one-third of all American women will develop some form of 
cancer.
    One-fourth of all American deaths will be from cancer, and 
we will spend more than $100,000,000,000 on cancer health care 
costs this year alone.
    On a brighter note, there is real hope as scientific 
knowledge and medical research continue to make important 
gains. But these gains need research dollars to proceed and to 
implement their results. Almost every one of us have been 
touched by this cruel disease. If we as a country do not 
adequately fund research now, we will pay for it in dollars, in 
lost lives, and in great personal misery in the future.
    Despite last year's unprecedented increase in NCI funding, 
this year's Federal funding represents less than $11 per 
person. That is barely the price of a pizza. Additionally, our 
country's changing demographics make these statistics worse, 
not better. More than 60 percent of cancer occurs in patients 
over 65. That is the Medicare population. As the baby boomers 
age, the number of Americans over 65 will double in 30 years, 
and cancer will become the number one cause of death in the 
next decade. We can see it coming.
    By 2010, annual costs associated with cancer will likely 
exceed $200,000,000,000. The Medicare program, already facing 
serious financial problems, will be totally crippled if cancer 
prevention and early treatment options do not significantly 
improve in the immediate future.
    Exciting developments are occurring daily in cancer 
research. I recently visited the NCI and I am immensely 
impressed by their accomplishments. I was particularly struck 
by a new technique, a virtual colonoscopy, that can make the 
painful screening procedure for colon cancer less invasive, 
thus encouraging more people to seek screening and getting care 
early.
    Over 80 percent of last year's appropriation of 
$15,000,000,000 goes toward research, not at NIH in Bethesda, 
but at medical and research facilities and large and small 
businesses in our home States. For example, in fiscal year 
1998, researchers in my home State of Alabama received over 
$166,000,000 from the NIH, and over $20,000,000 from the NCI.
    One of the facilities that received NIH funding is the 
University of Alabama in Birmingham. Let me mention just a few 
of the discoveries that were made at UAB with NCI research 
support. A new effective therapy for a previously untreatable 
form of childhood leukemia; novel vaccine strategies to treat 
colon and breast cancer and melanoma; an intracellular gene 
therapy technique for disarming the cancer cell in ovarian 
cancer; a naked DNA vaccine that is injected directly into 
muscle for colon cancer; and investigations of new chemo 
prevention agents in breast, prostate and oral cancer.
    Such discoveries are occurring around the country, not just 
at UAB. Important medical breakthroughs are constantly being 
made with the money that you are appropriating. The resulting 
discoveries are benefitting all of our people in immeasurable 
ways.
    Even with the generous annual support from your 
subcommittee, less than a third of the approved cancer research 
projects across the country are funded. The remaining two-
thirds that are not funded just might provide the key vaccine 
or treatment development that keeps one of us or one of our 
loved ones alive, or spared from intense suffering that comes 
from this disease. Increasing NCI's budget to $10,000,000,000 
will enable funding of almost one-half of the approved research 
grants. That is important, and it can make a very real 
difference.
    I urge this subcommittee to support a $2,000,000,000 
increase for the NIH, and the doubling of the NCI budget in the 
fiscal year 2000 Labor HHS Appropriations Bill. This is a 
wonderful investment for our country, and one that can make a 
real difference in all of our lives.
    On behalf of the NCCR, I want to thank the subcommittee for 
the opportunity to testify here today, and for your past 
generous support of biomedical research funding.
    [The prepared testimony of Linda Bachus follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. Well, Linda, thank you for your testimony. I 
apologize for not realizing that you were on our witness list 
today, and for not recognizing you earlier.
    I often say that public policy is made by the American 
people. You know as a Congressional spouse that your husband 
listens to his constituents and what their concerns are and 
tries to be responsive all the time. I was thinking as you were 
testifying that maybe we can have the one constituent that 
every Congressman or Congresswoman listens to, their spouse, 
get involved in this process more. It is wonderful to see that 
you are providing that kind of leadership on the issue of 
cancer.
    But if you could influence all the other Congressional 
spouses to talk to their member and tell them what a high 
priority this ought to be for the United States, that the down 
payment was made last year, and we have got to carry out this 
commitment then maybe we can make real progress. So I am 
enlisting your support to do that.
    Ms. Bachus. Thank you very much. That is certainly our 
mission at Congressional Families. We have a passion for that, 
because we want to be educated ourselves, and to be educating 
our spouses as well. Thank you very much.
    Mr. Porter. Thank you.
    Yes, Ms. Pelosi.
    Ms. Pelosi. I want to tell our distinguished witness how 
wonderful it is that she testified. It gives us hope. Many of 
the women in Congress have only thought that if the wives of 
the members were voting, we would have just endless money to 
invest in our issues. But I do think that our colleagues are 
sufficiently apprehensive of this issue because of the impact 
on their families. It is good that you are actively involved.
    Mr. Porter. Thank you, Ms. Pelosi.
                              ----------                              

                                          Thursday, April 15, 1999.

                     RESEARCH SOCIETY ON ALCOHOLISM


                                WITNESS

DR. MICHAEL E. CHARNESS, M.D., CHIEF OF NEUROLOGY, BROCKTON, WEST 
    ROXBURY VA MEDICAL CENTER; ASSOCIATE PROFESSOR OF NEUROLOGY, 
    HARVARD MEDICAL SCHOOL; CO-CHAIR, GOVERNMENT AFFAIRS AND ADVOCACY 
    COMMITTEE FOR THE RESEARCH SOCIETY ON ALCOHOLISM
    Mr. Porter. Our next witness is Dr. Michael Charness, M.D., 
Chief of Neurology at the Brockton, West Roxbury VA Medical 
Center; Associate Profess of Neurology at Harvard Medical 
School; and Co-Chair of the Government Affairs and Advocacy 
Committee for the Research Society on Alcoholism, testifying in 
behalf of the Society.
    Dr. Charness.
    Dr. Charness. Thank you, Mr. Chairman.
    My name is Michael Charness, and I conduct basic research 
on how alcohol affects the function of brain cells. But I also 
take care of the patients who have injured their brains by 
drinking and by the lifestyle that is associated with it. I 
appreciate very much the opportunity to speak before you today 
on behalf of the Research Society on Alcoholism. I am 
particularly pleased to see Representative Pelosi here, who 
spoke to our meeting when it was in San Francisco, and I 
believe understands our cause.
    We are a professional society whose 1,200 members conducted 
basic clinical and psycho-social research on alcoholism and 
alcohol abuse. I'd like to first thank you, Mr. Chairman, and 
the members of your subcommittee, for your courageous support 
of medical research. The scientific community and the patients 
we serve are grateful that you have championed the research on 
their illnesses.
    One in ten American will suffer from alcoholism or alcohol 
abuse. The cost to the Nation is $167,000,000,000 every year. 
The Government bears close to half of these costs. Alcohol is a 
factor in 50 percent of all homicides, 40 percent of all motor 
vehicle fatalities, 30 percent of all suicides and 30 percent 
of all accidental deaths. We see a human face to these 
statistics, families and friends who are killed by drunk 
drivers, frightened and abused children who grow up in homes 
with abusive, alcoholic parents, good people who lose their 
jobs, their families, their health and their dignity because 
they cannot stop drinking.
    Prohibition never solved the problem of alcoholism and 
current therapy is quite inadequate. Only research holds the 
promise of change. The National Institute on Alcohol Abuse and 
Alcoholism, NIAAA, funds over 90 percent of research on alcohol 
abuse in the United States. For 1999, the budget of NIAAA is 
$259,700,000.
    We are committing to this disorder $1.56 for every $1,000 
lost, and $18 for every affected individual. In 1997, NIAAA 
could fund only 27.8 percent of all grant applications where 
the comparable figure for NIH was 31.4 percent. I sit on the 
NIH review committee for alcohol research. Every time we sit 
down, we agonize over outstanding alcohol research proposals 
that will never be funded.
    This inability to fund proposals comes at a time of 
unprecedented opportunity in the field. Scientists, fundedby 
NIAAA, have identified discrete regions of the human genome that 
contribute to the inheritance of alcoholism. This type of genetic 
research will accelerate the rational designs of drugs to treat 
alcoholism.
    The development of effective therapies also requires that 
we understand better how alcohol affects the brain. The past 
year has produced some exciting discoveries. Molecular 
biologists have shown that alcohol targets specific regions and 
specific brain proteins to produce its effects. This gives us 
an opportunity to learn the precise structure of a target 
protein that alcohol attacks. With this information, scientists 
and the pharmaceutical industry will be in a position to design 
drugs that can block the effects of alcohol.
    Studies in fruit flies have demonstrated that a specific 
gene mutation can alter sensitivity to alcohol--studies in your 
district an important predictor of the development of 
alcoholism in humans, and because of the fantastic power of 
genetic studies in fruit flies, this type of research will 
greatly accelerate our understanding of how alcohol affects 
signaling in the brain.
    Continued progress has been made in the development of 
treatments for alcoholism. Naltrexone was approved several 
years ago, and in progress are studies on Acampersaid in 
combination with Naltrexone, which may provide an additional 
therapeutic weapon against alcoholism.
    One of the most tragic consequences of alcoholism is fetal 
alcohol syndrome, which is the most common preventable cause of 
mental retardation in the United States. If pregnant women 
didn't drink, they wouldn't have children with fetal alcohol 
syndrome. But as we know, many people simply cannot stop 
drinking. There is a great need to develop programs that we can 
confirm by research that are effective in preventing drinking 
during pregnancy.
    Alcohol abuse research has now reached a critical juncture 
and the scientific opportunities are both numerous and 
unprecedented. Due to the crisis of alcohol abuse and 
alcoholism in the United States, the Research Society on 
Alcoholism has urged Congress to support a $78,000,000 increase 
for NIAAA in fiscal year 2000 appropriation.
    However, given the magnitude of the problem and the 
abundance of research opportunities, RSA strongly urges the 
subcommittee to bring NIAAA's budget up to the level of 
comparable institutes. We thank you again, Mr. Chairman, and 
your committee, for the support you've shown, and are grateful 
for the opportunity to talk with you today.
    [The prepared testimony of Dr. Michael E. Charness 
follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. Dr. Charness, the first part of your testimony 
sounded like what I said to Dr. Varmus when Dr. Vertis at NIAAA 
was before us at the hearing. I was making the same point that 
while obviously it is very important to fund NIDA and to do 
drug research, it is perhaps because of the impacts on society 
much more important to provide funding for alcohol research. We 
have made a tremendous commitment to fund research on illegal 
drugs, but this legal drug has not done very well by 
comparison. I do not mean to suggest we ought to retreat at all 
on our funding for NIDA, but I do think that we ought to 
provide additional funds in the area of alcohol and alcoholism 
because of its tremendous effects upon our society and upon 
individuals in our society.
    I am sure that many, many, a very high percentage of the 
families in this country are affected negatively by alcohol and 
alcohol abuse one way or another at one time or another. And 
the only distinction I can see between the work of NIDA and the 
work of NIAAA is that one is working on drugs that are illegal, 
and the other happens to be working on a drug that is legal. 
Otherwise, both of them affect our society equally badly, only 
more people use alcohol and abuse alcohol by far than use or 
abuse illegal drugs.
    So I think your points are very well taken, and we will do 
the best we can to address that.
    Dr. Charness. Thank you very much.
    Mr. Porter. Thank you.
                              ----------                              

                                          Thursday, April 15, 1999.

                      SINAI FAMILY HEALTH CENTERS


                                WITNESS

C. MICHAEL SAVAGE, CHIEF EXECUTIVE OFFICER, SINAI FAMILY HEALTH CENTERS
    Mr. Porter. Our next witness is C. Michael Savage, CEO, of 
the Sinai Family Health Centers.
    Mr. Savage. Good afternoon, Mr. Chairman, Congresswoman 
Pelosi.
    Thank you for providing me with this opportunity to present 
testimony. I am Mike Savage, I am the Chief Executive Officer 
of Sinai Family Health Centers, the largest network of 
community health CENTERS in the Midwest. Our mission is to 
provide high quality, cost effective primary and preventive 
health care throughout metropolitan Chicago.
    Since 1991, when we separated from Mount Sinai Hospital to 
become a community health center, our network has grown to 21 
clinics where we provide services to 65,000 patients annually. 
In 1990, the U.S. Census revealed that Cook County contained 7 
out of the 10 poorest communities in the country. Sinai Family 
Health Centers operates facilities in six of these, serving the 
indigent, unemployed or working poor, regardless of their 
ability to pay.
    As you know, over 43 million Americans are uninsured today, 
the highest figure since instituting Medicare and Medicaid. In 
Chicago, Medicaid enrollment has decreased in recent years, due 
largely to restrictions in new welfare and immigration laws, 
and an improved economy. Unfortunately, though, many of the 
individuals leaving Medicaid for jobs are now uninsured, 
because their new employers do not provide health benefits. 
Community health centers fill this gap by providing vital 
health services to the uninsured.
    Also with rising enrolment of Medicaid patients in managed 
care, community health centers throughout the country are 
receiving decreased reimbursement for serving Medicaid 
patients. Even though Sinai Family Health Centers has 
instituted a variety of changes to reducing counter costs by 
almost 25 percent, we continue to be squeezed financially by 
reduced reimbursement and increasing numbers of uninsured.
    Sinai Family is pleased that Congress, and in particular 
your subcommittee, responded to these trends by providing the 
consolidated health center program with an increase of 
$100,000,000 in fiscal year 1999. We strongly support the 
National Association of Community Health CENTERS' request for 
an additional $100,000,000 in fiscal year 2000 to serve 350,000 
more uninsured people.
    Addressing the needs of infants and their mothers continues 
to be a priority for Sinai Family. In 1997, we were pleased to 
be given the opportunity, along with three other community 
health CENTERS, to reduce infant mortality and low birth weight 
rates on Chicago's west side through a Healthy Start grant. We 
would ask that the committee continue to fund the Healthy Start 
program to expand and enhance pre and post natal care.
    Sinai Family recently developed an innovative program to 
address the specific health care problems faced by the elderly 
living in Chicago's poorest neighborhoods. Our program called 
Health Link provides medical screenings and access to health 
care for seniors living in public housing. Over the last year, 
Health Link screened over 4,000 seniors and linked 
approximately 400 to primary health care. Sinai Family asks 
that the subcommittee encourage the Administration on Aging to 
continue and expand its support and evaluation of Health Link.
    Sinai Family also encourages the subcommittee to direct the 
Centers of Disease Control and Prevention to continue to work 
with community based organizations to resolve racial health 
disparities by providing enhanced access to services and by 
building trust in the health care systems by addressing social, 
economic and cultural barriers to health care.
    Finally, the HIV and AIDS epidemic continues to be of great 
concern to Sinai Family Health Center, because we now find 
ourselves in the two newest epicenters in Chicago. Strong 
evidence has emerged in recent years revealing that the 
presence of sexually transmitted diseases increases the 
likelihood of both transmitting and acquiring HIV. Conversely, 
evidence shows that early identification and treatment of 
sexually transmitted diseases can significantly slow the spread 
of HIV.
    In response, we have developed comprehensive HIV prevention 
and treatment programs, and we would urge the subcommittee to 
direct the CDC to support the prevention of HIV/AIDS through 
sexually transmitted disease treatment.
    Thank you for this opportunity to testify.
    [The prepared testimony of C. Michael Savage follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. Mr. Savage, did I hear you correctly say that 7 
out of 10 of the poorest communities in America are around 
Chicago?
    Dr. Savage. Are in Cook County, correct.
    Mr. Porter. Are in Cook County, outside of the City of 
Chicago?
    Dr. Savage. I think one or two are outside the city and the 
remainder are inside the city.
    Mr. Porter. When you say community, then, you are talking 
about neighborhoods or identifiable parts?
    Dr. Savage. Census tracts.
    Mr. Porter. You said correctly that there are a growing 
number of uninsureds. How does a non-profit organization like 
yours handle more uninsureds without, I mean, we did give an 
increase, very substantial increase, to community health 
centers. But is that covering the need?
    Dr. Savage. We appreciate that increase, but it doesn't 
begin to meet the need. I can relate what we have done. We did 
a total re-engineering of our service delivery about two and a 
half years ago. That has helped us reduce our encounter costs 
by about 25 percent. We have also intentionally grown our base 
so we can spread fixed costs across a broader base, and then we 
have also instituted standardized productivity, and alongside 
of that, quality outcome measures, so that the productivity of 
our providers has dramatically increased without compromising 
any sort of quality of care.
    Then the last thing that we are getting ready to undertake 
is the consolidation of some of our facilities, in order to 
reduce occupancy overhead costs, but also ongoing operating 
costs, by reducing management staffing.
    Mr. Porter. We have placed community health centers for the 
very reasons you mentioned at a high priority, and I suspect 
the subcommittee is going to continue to do that. We will do 
our best.
    Dr. Savage. Great. We appreciate that. Thank you.
    Mr. Porter. Thank you, sir.
                              ----------                              

                                          Thursday, April 15, 1999.

                  BOSTON MUSIC EDUCATION COLLABORATIVE


                                WITNESS

MARK VOLPE, MANAGING DIRECTOR, BOSTON SYMPHONY ORCHESTRA
    Mr. Porter. Mark Volpe, the Managing Director of the Boston 
Symphony Orchestra, testifying in behalf of the Boston Music 
Education Collaborative. Mr. Volpe, it is nice to see you.
    Mr. Volpe. Good afternoon. I have a fond recollection of 
sitting on the Capitol steps hearing a youth chorus from your 
district several months ago.
    Mr. Porter. Thank you for coming and listening to the young 
people.
    Mr. Volpe. They were terrific. Although I am, as you noted, 
the Managing Director of the Boston Symphony, as well as the 
Boston Pops and the Tanglewood Music Festival, I am here to 
testify in behalf of the Boston Music Education Collaborative. 
The Boston Music Education Collaborative partners with the 
Boston public schools with three leading non-profit 
institutions, the New England Conservatory, WGBH, which is 
Boston's public television station, as well as the Boston 
Symphony. The primary purpose is to bring music education back 
into the classroom in Boston.
    You may recall Christine Taylor, the executive director of 
the BMEC, singing the preamble to the Constitution during her 
testimony before this subcommittee two years ago. I will spare 
you the agony of having to listen to me, although if I did 
sing, I think you would quickly realize why I gave up my career 
aspirations as a performer and went into management.
    The BMEC was launched in 1993, to enable the four partners 
to contribute to a city-wide vision for the arts. The program 
has incorporated innovative methods into the teaching of music 
in the classroom. It has also infused music into children's 
studies of all subjects, and has provided professional 
development for music teachers as well as non-music teachers, 
who are now integrating music into math, social studies, 
science and language arts classes.
    Research has identified a strong correlation between music 
education programs and academic performance, dropout rates and 
community support for schools. Research also shows that a 
comprehensive, inter-disciplinary music curriculum can have a 
positive impact on students' academic achievement, self-esteem 
as learners, self-discipline, and over time, neurological, 
emotional and physical development.
    The comprehensive music curriculum includes vocal and 
instrumental performance, music appreciation, computer assisted 
composition, cross-cultural musical programs, and artists in 
residence programs. The BMEC proposes to offer a comprehensive 
inter-disciplinary music program for the Boston public schools. 
The program will provide a school-wide curriculum and resources 
that use music as a tool to foster high levels of student 
academic and artistic achievement. The program will help 
students and teachers meet benchmarks for the Boston public 
schools music and academic standards.It will improve teaching 
skills among the music teachers, and also will create a management 
structure for its perpetuation.
    The comprehensive multi-disciplinary music program will 
draw upon contributions from four partners. The Boston public 
schools will continue to evaluate in the music area. They will 
also be able to create performance opportunities for students 
and utilize the BMEC as a partner to offer higher standards for 
music in all academic subject areas.
    The New England Conservatory's music and education 
department and research center will help schools build a strong 
music education foundation to facilitate the implementation of 
the program. WGBH will combine its extensive media resources 
and its teacher center to tie together music and academic 
subjects with the partner schools.
    The Boston Symphony will provide opportunities for first-
hand exposure to great music, world class professional 
musicians, and useful teaching resources. We now have, I think, 
15 or 16 musicians functioning as godparents for specific 
schools within the Boston system, and we are hoping to add at 
least 6 or 7 next year.
    We also have an educational resource center that is 
available to teachers as well as some students, and we are 
looking to actually really further the whole professional 
development with our work in this particular education center, 
as well as the Tanglewood facility in the Berkshires in western 
Massachusetts.
    We have also collected a wide body of classroom materials 
and provided a librarian for this resource center. The school 
system could not provide such resources. It has become the 
official listening library for the entire school system, and we 
are working very closely with Mr. Ozawa and Mr. Lockhart and 
John Williams to continue offering as much music, using our 
resources as well as the resources we have through John 
Williams' Hollywood connections.
    The BMEC is excited about launching this new program. It is 
our hope that a successful program can be replicated in other 
cities throughout the country, and we request that the 
subcommittee provide sufficient funding to Department of 
Education to enable the Department to support this innovative 
program, and the grant will obviously be supplemented from 
funds from the local level through our private fund raising 
efforts.
    I want to again express my appreciation for allowing me 
this opportunity to present testimony.
    Mr. Porter. Mr. Volpe, thank you for your testimony. We 
appreciate your being here today.
    I wish I had time for questions, but I don't. We will have 
to stand in recess briefly for this vote. Thank you very much.
    The subcommittee stands in recess.
    [Recess.]
    [The prepared testimony of Mark Volpe follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

                                          Thursday, April 15, 1999.

                      NATIONAL BLADDER FOUNDATION


                                WITNESS

PHILLIP E. STEPHENS, MEMBER, NATIONAL BLADDER FOUNDATION
    Mr. Porter. The subcommittee will come to order. Our next 
witness is Phillip E. Stevens, a member of the National Bladder 
Foundation, testifying in behalf of the Foundation. Here to 
introduce him is our colleague, Congressman Bob Filner, of San 
Diego.
    Mr. Filner. Thank you, Mr. Chairman. I appreciate the 
courtesy. As you know, we are all trying to adjourn today, so 
thank you.
    I just want to briefly introduce Phil Stevens, because I am 
here, as he is, in support of increased research funding for 
bladder disease. Although you know me from legislative work, 
most of my colleagues do not know that I suffer from the 
bladder disease, interstitial cystitis, which we fondly call 
IC.
    As you will hear from Phil Stevens' testimony, only a 
minority of men get IC, and it is often difficult to diagnose 
and difficult to treat, as he will describe. In fact, the 
disease is often misdiagnosed. Many doctors are unclear what 
the disease is.
    And in fact, in my case personally, risky surgery is often 
mistakenly ordered. I was advised to get prostate surgery. I 
went to several other doctors who said that was the worst thing 
possible in this situation. So I could have had surgery that 
was risky, and yet not appropriate for this. No matter what the 
outcome of your diagnosis is, the daily suffering is very 
profound.
    So from my own experience, I know that bladder disease is 
severely underfunded at the National Institutes of Health, and 
I urge you to give serious consideration to increasing the 
research funding for diseases such as interstitial cystitis.
    This is Mr. Phil Stevens, the first male IC patient to 
provide testimony before this subcommittee. I thank you for 
your courtesy to me.
    Mr. Stevens. Thank you, Congressman Filner, and thank you, 
Chairman Porter, for giving me the opportunity to speak to you 
this afternoon.
    I am here representing the National Bladder Foundation, and 
I'd like to share a bit of a personal story with you today. I 
would also like to request your help in funding research to 
cure serious bladder diseases.
    Before I begin, though, I have been asked by LPGA golfer 
Terry-Jo Meyers to send the Chairman and the committee members 
her personal regards. It is Terry-Jo who usually provides the 
testimony to the committee on interstitial cystitis. 
Unfortunately, she is playing in a golf tournament today in 
Houston.
    Terry-Jo is extremely grateful for the committee's strong 
support last year, and hopes to testify again next year, 
subject to her tournament schedule.
    The National Bladder Foundation and I are also very pleased 
to have the support of Congressman Filner. As he mentioned, he 
and I share the distinction of being members of a very small 
minority of male sufferers with the bladder disease known as 
interstitial cystitis. We are very grateful for Bob's presence 
here today, his public acknowledgement of his own condition and 
his strong support for increased research funding.
    My name is Phil Stevens and I have interstitial cystitis. 
For most of my working life, I have been in the commercial real 
estate business, developing shopping centers and other 
commercial properties throughout the southeastern United 
States. I live in Atlanta, Georgia, and am Chairman of Stevens 
Property Group.
    In 1990, I was on my honeymoon in the south of France when 
I began experiencing a burning, pinching and quite painful 
sensation in the area of my groin. I was 43 years old, and it 
was my first marriage. I had no idea what could be wrong with 
me, but I can tell you, I was extremely worried.
    Like so many men with IC, my problem was incorrectly 
diagnosed as benign prostate enlargement, or BPH. In 1992, I 
had the first of two surgical procedures to relieve prostate 
enlargement. They did nothing to help. I was then bounced 
around to several other urologists, all of whom prescribed the 
same ineffective medicines. Still nothing helped, and I lived 
in excruciating pain, needing to urinate as many as 20 or 25 
times a day.
    Because the classic symptoms of many bladder diseases are 
frequency or urination and the feeling of urgency, that is, the 
need to urinate many, many times a day, patients often get 
misdiagnosed, and like me, are bounced around from doctor to 
doctor. Women in particular are often told, it is all in your 
head. In my case, once my doctors had ruled out the fact that I 
did not have BPH, I was referred to a psychiatrist to help with 
stress management.
    But it turned out the psychiatrist was Atlanta's leading 
authority on criminal deviate sexual behavior. You can only 
imagine the cast of characters I shared that waiting room with. 
[Laughter.]
    Mr. Stevens. Finally, in June of 1996, almost four years 
after I began to experience the pain symptoms, I went back to 
my original urologist and underwent yet another surgery for 
benign prostate enlargement. When I woke up in the recovery 
room, the doctor told me I had interstitial cystitis and there 
was no cure for the disease. This was not happy news, but at 
least I had finally found a name for my disease.
    IC is an inflammation of the bladder wall, and may affect 
up to one million people in the United States. Most of its 
patients are women, only about 10 percent are men. You may know 
that while interstitial cystitis cannot kill you, a tragic 
number of its victims resort to suicide. The pain and the sense 
of helplessness which the patient feels frequently leads to a 
diminution in their quality of life, which just becomes too 
much to bear.
    Bladder disease affects a part of the body which most of us 
are embarrassed to talk about. I cannot tell you how hard this 
was for me to deal with. I had a wonderful time as a bachelor 
for 20 years, and to finally marry the woman of my dreams, only 
to be affected with this disease starting on my honeymoon, 
certainly did a job on my male ego.
    I cannot tell you how much Senator Dole's ads on national 
TV for Viagra have really meant to me, and I know thousands of 
others. I also want to thank Congressman Filner again for 
talking about IC and for all the help he has given us.
    Our statistics are, it is estimated, that over 35 million 
people suffer with some form of bladder disease in the United 
States. That is more than one in ten persons. We need your help 
in finding causes and cures for bladder diseases, diseases that 
affect roughly 13 percent of all Americans in all age brackets.
    Statistics suggest that bladder disease research is 
profoundly under-represented in the NIH research funding. Only 
41 cents is spent annually on bladder disease per patient per 
year, compared with such other diseases as lupus, $35, heart 
disease, $74, and Alzheimer's, $81.
    The National Bladder Foundation and all bladder disease 
patients are so grateful for the members of this subcommittee, 
and especially to you, Chairman Porter, for your ongoing 
research of IC and urological diseases. You can help us in 
several ways, one, by increasing the funding of the urology 
program, NIDDK, in fiscal year 2000. Two, we hope that the 
NIDDK will issue a series of RFAs specifically for bladder 
research, interstitial cystitis and incontinence in fiscal year 
2000, and designate the funds for those purposes. And finally, 
we hope the NIDDK will establish inter-disciplinary centers to 
develop treatment for the 35 million Americans who suffer from 
bladder disease.
    Thank you so much for your attention, and we will try to 
answer any questions you have.
    [The prepared testimony of Phillip E. Stephens follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. Thank you for your testimony, Mr. Stevens.
    Bob, I did not realize that you have this disease. We have 
been very thoroughly briefed in regard to the disease in the 
past, several times by Terry-Jo Meyers. It is unfortunate for 
us that she is out on tour, but I do not think it is 
unfortunate for her.
    I think it is wonderful that she is out on tour, because 
that means that she has got it under control. She has made 
great progress since she began testifying here on it, and 
apparently got some drugs that have really helped a great deal, 
which means there is hope.
    I know that this, along with other bladder diseases, are 
very serious matters for anyone, obviously for you and I guess 
for Bob as well. we are going to do the best we can to provide 
the funds to find out the keys that will unlock this mystery 
and find ways we can deal with it better.
    Mr. Stevens. We certainly will appreciate it.
    Mr. Porter. Thank you. Thank you, Bob.
    We are obviously making progress, and there yet another 
vote. we are going to take one more witness then we are going 
to have to stand in recess yet again.
                              ----------                              

                                          Thursday, April 15, 1999.

                  BIOTECHNOLOGY INDUSTRY ORGANIZATION


                                WITNESS

THOMAS C. SEOH, VICE PRESIDENT, GENERAL COUNSEL AND SECRETARY OF 
    GUILFORD PHARMACEUTICALS
    Mr. Porter. Our next witness is Thomas C. Seoh, Vice 
President, General Counsel and Secretary of Guilford 
Pharmaceuticals, testifying in behalf of the Biotechnology 
Industry Organization.
    Mr. Seoh. Mr. Chairman, thank you for this opportunity to 
appear on behalf of my company, Guilford Pharmaceuticals, and 
the Biotechnology Industry Organization. Guilford is a 
Baltimore based biopharmaceutical company. We were founded in 
1993. We have about 220 employees, and we have a public market 
capitalization of over $200,000,000. BIO is an industry 
association that represents over 860 biotech companies, 
academic institutions and State biotechnology centers.
    We strongly support increased funding for NIH for a simple 
reason: it will lead to longer, healthier lives for the 
American people. I want to tell you today about two programs at 
Guilford, which we hope might one day revolutionize the 
treatment of cancer and neurodegenerative diseases.
    My first story is about targeted and controlled delivery of 
drugs for cancer. In the 1970s, two bright young scientists, 
Bob Langer and Henry Brem, met in the laboratory of Dr. Judah 
Folkman at Harvard. They were drawn to the problem of how to 
deliver a drug for brain cancer to the brain and keep it there 
long enough to do any good.
    Their collaboration led to the invention of GLIADEL wafer. 
I brought a sample with me here. It is a dime-size 
biodegradable polymer wafer which incorporates the cancer drug 
BCNU. It is implanted at the time of surgery for tumor 
resection, for cutting out the tumor. When GLIADEL was launched 
in the United States in 1997, it was the first new brain cancer 
therapy cleared by the FDA in over two decades. NIH funding not 
only helped to create the scientific infrastructure that 
brought together creative scientists, but also provided its own 
feedback loop and ripple effects.
    Dr. Brem is now at Johns Hopkins, and he heads a national 
cooperative drug discovery group, an NCDDG, which is funded by 
NIH, for continuing research in new approaches to brain cancer. 
At Guilford, we hope to begin human trials later this year for 
a controlled release polymer product delivery Taxol, initially 
targeting ovarian cancer.
    My second story is about trying to develop pills for nerve 
regeneration. Sustained NIH funding at the laboratory of Dr. 
Sol Snyder, Director of Neuroscience at Johns Hopkins, resulted 
in an unexpected discovery in 1990. Certain proteins first 
targeted by drugs to suppress the immune system were discovered 
to play a pivotal role in the regeneration of nerves. Guilford 
licensed this technology and our scientists subsequently 
designed orally available compounds that regenerate nerves, but 
were notimmunosuppressive.
    I brought with me a poster which is an illustration of 
nerve growth. On the left is an untreated cell, on the right is 
a cell treated with our compound. As you can see, the neural 
processes have been promoted by our compound. We have 
discovered that our compounds demonstrate activity in animal 
models of a wide range of neurodegenerative diseases, including 
Parkinson's disease, Alzheimer's, head and spinal cord injury 
and peripheral neuropathy.
    Aggressive funding of NIH over the past five decades by 
prior Congresses have yielded a rich pipeline of promising 
therapies and a U.S. life sciences industry which is the world 
leader. As the 21st century dawns, we are on the cusp of a 
biomedical revolution that represents a unique opportunity to 
leverage additional funding.
    Spectacular advances in molecular biology, cell biology, 
genomics, and new tools for drug discovery just in the past 
decade have generated unprecedented opportunities to take human 
health to a whole new level. In determining the optimal 
allocation of tax dollars, we think that investments that have 
been working extremely well ought to be increased, particularly 
in light of the opportunities afforded by recent scientific 
advances.
    While we support increased funding for basic research, we 
oppose proposals to reinstate a reasonable price review policy 
at NIH. For every drug that reaches the market, the 
biopharmaceutical industry funds thousands of failed compounds. 
Profits from one successful drug will necessarily be excessive 
relative to the costs of developing that particular drug. 
Because the profits have to pay for the failure of all the 
other compounds.
    In our view, it would be acting at cross purposes to 
increase funding for basic research and at the same time, 
reinstate a Government price review which would have the 
systemic effect of steering companies away from programs that 
are subject to those policies.
    Thank you for this opportunity to express our views.
    [The prepared testimony of Thomas C. Seoh follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. Mr. Seoh, I agree with everything you said. It 
is a wonderful partnership between the mostly basic research 
that NIH funds and the applied research that industry, like the 
one you represent, follows and brings to market and to the 
American people and to the world, solutions and preventions and 
alleviations of disease making, as you said, lives longer and 
better.
    We appreciate your testimony. we are going to do the best 
we can to provide additional funding for NIH. While we do not 
have jurisdiction over the price mechanisms you mentioned, I 
agree with the points you make. I think the industry has to 
make them a bit more strongly, because it is often used by 
people who do have to pay a large price for certain drugs. It 
is never mentioned that there are many other failures that have 
to be funded, and those are also contained in the prices. Thank 
you for coming today.
    Mr. Seoh. Thank you, Mr. Chairman.
    Mr. Porter. The subcommittee will stand in recess for a 
vote.
    [Recess.]
                              ----------                              

                                          Thursday, April 15, 1999.

                 BLUE CROSS AND BLUE SHIELD ASSOCIATION


                                WITNESS

HARVEY FRIEDMAN, VICE PRESIDENT FOR SENIOR MARKETS, BLUE CROSS AND BLUE 
    SHIELD ASSOCIATION
    Mr. Porter. The subcommittee will come to order. Our next 
witness is Harvey Friedman, Vice President for Senior Markets, 
Blue Cross and Blue Shield Association. Mr. Friedman.
    Mr. Friedman. Thank you, Mr. Chairman, for the opportunity 
to testify today on the fiscal year 2000 budget for medical 
contractors. I am Harvey Friedman, Vice President for Senior 
market, at the Blue Cross and Blue Shield Association.
    Mr. Chairman, as you know, for more than 30 years, Blue 
Cross and Blue Shield plans have partnered with the Government 
to handle the day to day work of paying Medicare claims 
accurately and timely. Nationally, Blue Cross and Blue Shield 
plans process almost 90 percent of Medicare Part A claims, and 
about 57 percent of Part B claims. We are extremely proud of 
our role as Medicare contractors and the performance record we 
have achieved.
    I would first like to thank you and the subcommittee for 
the increase in funding that Medicare contractors received in 
fiscal year 1999. The increased funding level has helped 
contractors improve provider education efforts, and respond to 
the increased number of appeals and inquiries, much of which 
results from increased efforts to combat fraud, waste and 
abuse.
    Medicare contractors continue to be Medicare's first line 
of defense against fraud and abuse. Adequate funding must 
continue in order to meet those demands, as well as the day to 
day claims processing activities.
    The President's fiscal year 2000 budget proposes an overall 
funding level for Medicare contractors of $1,274,000,000, 
essentially the same as in fiscal year 1999. However, the 
President's budget is dependent on $93,000,000 in new provider 
user fees, a concept which has been rejected by Congress in the 
past. Without the user fees, the President's budget represents 
a 7 percent reduction from fiscal year 1999.
    The Blue Cross and Blue Shield Association urges Congress 
to again reject these user fees and appropriate a total of 
$1,290,000,000 for Medicare contractors, which would represent 
a $16,000,000 increase.
    In addition to depending on user fees, an unreliable source 
of revenue, the HCFA funding request is based on the 
questionable assumption that fee for service claims volumes 
will decline for the first time in Medicare history. We are not 
comfortable with that assumption.
    Of course, there will be new work next year. We anticipate 
the handling of additional increases in appeals and inquiries. 
We need to implement from the BBA the various new prospective 
payment systems and we need to begin to work on implementing 
the HIPAA administrative simplification provisions, which will 
be anything but simple. And of course, we must still worry 
about Y2K readiness, including the follow-through and cleanup 
activities which will undoubtedly occur.
    On the subject of Y2K, we appreciate the support this 
subcommittee has given to contractor's efforts to become 
millennium ready. The President's budget request is 
$150,000,000 for HCFA Y2K activities in fiscal year 2000. 
However, the budget requests that the $150,000,000 be 
appropriated to the public health and social services emergency 
fund, rather than directly to HCFA. The Blue Cross and Blue 
Shield Association believes that placing the money outside of 
HCFA's budget will add an unnecessary bureaucratic layer that 
could complicate and delay the distribution to contractors.
    Lastly on the subject of funding, we believe that finding a 
reliable and stable funding source for Medicare contractors is 
absolutely critical to achieving excellence in performance. In 
the President's budget, HCFA indicated its interest in 
exploring alternate funding options, alternative funding 
options, for Medicare administrative activities. We support 
those efforts and would like to work with this committee to 
move toward an ongoing stable and reliable funding source for 
the future.
    In conclusion, let me thank you again, Mr. Chairman, for 
the increased funding in fiscal year 1999. We urge you to 
appropriate $1,290,000,000 in fiscal year 2000, without relying 
on provider user fees. A letter recently published in Health 
Affairs, signed by 14 health policy experts, stressed the need 
for more Medicare administrative funding.
    And finally, on a related note, we believe that Congress 
should once again reject HCFA's request to legislate far-
reaching changes in the Medicare contractor program. This is 
not the time to fragment contractor functions or introduce 
further instability into the contractor community.
    Thank you.
    [The prepared testimony of Harvey Friedman follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. Thank you, Mr. Friedman.
    Your testimony defines our problem. There will be no user 
fees, as you have both suggested and indicated in your 
testimony. You need more money and the President's budget does 
not contain it. And we have budgetary caps in place that are 
going to hold down our allocation and make it very difficult to 
achieve any of these things.
    As I said earlier today, be patient. we are going to try 
and get where we want to go. We will do our best. Thank you for 
testifying.
    Mr. Friedman. Thank you very much.
                              ----------                              

                                          Thursday, April 15, 1999.

AMERICAN ASSOCIATION OF UNIVERSITY ENVIRONMENTAL HEALTH SCIENCE CENTERS


                                WITNESS

WILLIAM G. THILLY, PRESIDENT, AMERICAN ASSOCIATION OF UNIVERSITY 
    ENVIRONMENTAL HEALTH SCIENCE CENTERS
    Mr. Porter. Our next witness is Professor William G. 
Thilly, Professor of Bioengineering, Environmental health 
Director, Center for Environmental Health Sciences at MIT, and 
President of the American Association of University Health 
Science Centers, testifying in behalf of the association.
    Professor Thilly.
    Mr. Thilly. Thank you, Chairman Porter. On behalf of the 
association, of which I am president, representing 28 
universities throughout the country, who combine studies in 
genetics, physiology, toxicology, epidemiology, a broad focus 
of modern technology, in the area, trying to find out if there 
are environmental causes of major diseases, and if they are 
found, to devise and work with people specializing in those 
diseases in order to figure out how to prevent them, or 
possibly by finding the causation, get a better feeling for the 
mechanism.
    I have heard your remarks here today, and I think it would 
be unnecessary for me to further urge the continuing commitment 
that the Congress and this subcommittee has shown for 
increasing the overall NIH budget. Inside this framework, which 
has done so much for medicine and public health in the last 50 
years, with the Congressional investment, all we researchers 
can do is applaud.
    However, we think that every once in a while, it is 
appropriate to come here and specifically show you something 
where we really think that the investment has paid off. In the 
area of environmental health sciences, the biological 
mathematicians have been working together in opening up a new 
area in epidemiology, one that is found now outside of the 
schools of epidemiology, one which I have represented here in 
this diagram.
    Basically, I will use cancer as an example, cancer, with 
the exception of pediatric cancers, is quite low during the 
lives of Americans. It starts to rise approximately linearly 
between the ages of 50 and 60. But interestingly reaches a 
maximum previously unappreciated between the ages of 80 and 90 
for varying kinds of cancers, then declines distinctly by the 
time we get to our centenarians.
    The mathematicians have taken advantage of this to be able 
to define an actual definition of the actual factor of each 
birth cohort, such as the birth cohort of 1935, or the birth 
cohort of 1945, that were at risk on say, colon cancer or 
prostate cancer or breast cancer. With this, we have put our 
computers to work, and we have taken a retrospective view, here 
I have truncated it at 1860. But in fact, we can go back with 
data collected by the Census Bureau on the causes of death in 
America collected in 1904, where we are actually able to look 
right to the dawn of the industrial revolution.
    What I thought I would show you today is some prima facie 
evidence why we really understand that from a public health 
standpoint that there are environmental factors, however 
unknown. I draw your attention to colon cancer. You can see 
when we have here for European American males, you can see that 
over this entire historic period, there has been no change in 
the risk factors, the combination of genetic and environmental. 
However, if we look at lung cancer, we see there is an increase 
of fourfold in the birth cohorts which were the very first to 
ever see manufactured cigarettes. You can see it declining as 
men started to go down in their cigarette usage in the birth 
cohorts of the 1940s and now the 1950s and 1960s.
    On the other hand, none of us have any understanding of 
what were the environmental changes which gave rise to this 
large increase in deaths by leukemia, brain cancer and 
lymphoma. Lymphoma continues to this day. These are the kinds 
of things that the investment that the committee and the 
Congress have made are paying off in terms of being able to 
make these kinds of direct investigations of public health 
records, and put it in terms that guide the overall search for 
the genomic underpinnings, the inherited causes that give rise 
to people, a fraction of the population at risk.
    For instance, we calculate about 40 percent of the American 
population, blacks and whites, males and females, is at risk of 
colon cancer. It is an abstract thing, you have to go back to 
1801 to get a feeling for what I am talking about. I am talking 
about, if no one died from anything else, 40 percent would 
already have died at age 120. So it is the integral under the 
curve working from the actual death rates. This is the kind of 
thing we are now able to calculate. We are able to calculate it 
not only for cancers, we are able to do it for virtually forms 
of major mortal diseases, including diabetes, cardiovascular 
and cerebrovascular diseases.
    I thank you for the support that your committee has given. 
It has given a tremendous boost to the enthusiasm, it has 
opened up opportunities for our younger researchers. Some of us 
old hands in going through the peer review process understand 
how important it is to the country both in making new jobs and 
in delivering things that help prevent and cure disease.
    Thank you so much.
    [The prepared testimony of William G. Thilly follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. Professor Thilly, we appreciate your applause. 
But you can do something else. You can mobilize your colleagues 
in the academic world to impact Congress, and to send a message 
to every Congressman and Congresswoman and every Senator that 
this should be a high priority for our country. If they hear 
that message from people that they highly respect, such as 
those in the academic community, I think it will have a very, 
very salutary effect on our getting where we want to go.
    Mr. Thilly. Thank you, Mr. Congressman, and I will pass 
that on to all of our members who this year will visit in their 
home districts 140 representatives of the Congress, and sit 
down and explain things slowly.
    Mr. Porter. That is the way to do it. Thank you very much.
                              ----------                              

                                          Thursday, April 15, 1999.

                      AMERICAN COLLEGE OF SURGEONS


                                WITNESS

DR. DAVID B. HOYT, M.D., FACS, CHAIRMAN, COMMITTEE ON TRAUMA, AMERICAN 
    COLLEGE OF SURGEONS
    Mr. Porter. Our next witness is Dr. David B. Hoyt, M.D., 
FACS, Chairman of the Committee on Trauma, representing the 
American College of Surgeons.
    Dr. Hoyt.
    Dr. Hoyt. Good afternoon, Chairman Porter. I am David Hoyt, 
Chairman of the American College of Surgeons Committee on 
Trauma. I work at the University of California, San Diego, and 
specialize in trauma, burns and critical care.
    Thank you for the opportunity to appear before you today 
and express the College's view on funding for trauma system 
development. The College's involvement in trauma care and the 
past achievements of the program we are discussing today are 
detailed in my written statement. Rather than repeat what is 
already before you, I thought I would focus my remarks on the 
history of the trauma system development in general, and as a 
result of the Trauma Care Systems Planning and Development Act.
    The trauma system is a regional organization of existing 
health care resources that provides prompt, definitive care to 
severely injured patients. Our efforts to care for soldiers 
wounded during military conflicts taught us of the value of 
minimizing the amount of time that elapses between the onset of 
severe injury or life-threatening injury and the time the 
definitive treatment, often surgical care, can be provided.
    Civilian trauma care systems began to evolve in the 1970s. 
Originally they centered on urban trauma centers that provided 
the majority of care to uninsured patients. The trauma system 
concept has evolved into one in which the trauma center is only 
one key component in the continuum of care. The most 
sophisticated trauma care centers in a region care for the most 
severely injured patients. Other hospitals participate in the 
system and care for injured patients to the extent that their 
resources are appropriate.
    Key to this all are triage and transportation protocols 
that permit accurate and timely recognition of injury severity 
and prompt access to the most appropriate treatment facility. A 
truly inclusive trauma system, then, extends beyond acute care 
hospitals to encompass injury prevention, rehabilitation and 
search, and provides outreach into rural areas as well.
    The original legislation that led to enactment of the 
Trauma Care System Planning and Development Act stemmed from a 
report issued by the GAO in 1986. That report was commissioned 
by Congressional leaders who were concerned about the status of 
emergency medical service, or EMS, system development, after 
HRSA's categorical grant program was incorporated into broader 
preventive health and health services block grants.
    GAO concluded that progress in EMS system development was 
continuing, but that the Nation was experiencing thousands of 
unnecessary deaths and disabilities each year simply because of 
inadequate organization of its trauma care resources. GAO 
outlined steps for Congress to take in order to provide Federal 
leadership in trauma system development.
    That outline provided the blueprint, if you will, for the 
program we are urging you to support today. To date, only one 
half of the United States has an organized trauma care system. 
The purpose primarily of the Trauma Care System Planning and 
Development Act is to provide grants, seed money for States to 
use in planning, implementing and developing comprehensive 
trauma systems. The program operated for about three and a half 
years until funding was rescinded in 1995 in order to fund 
emergency disaster relief.
    Without funding the authorization was allowed to lapse 
until last year, when the program was reauthorized as part of 
the Health Professions Education Bill. Interestingly, the 
Institute of Medicine issued a report earlier this year called 
Reducing the Burden of Injury. This report credits the Federal 
trauma system grant program for much of the progress that has 
been made in efforts to control the impact of severe injury in 
the U.S. The report also notes that much work needs to be done, 
and that the Federal Government can play what is termed a 
catalytic role in getting that work done.
    Indeed, IOM concludes that trauma system development is the 
shared responsibility of Federal, State and local agencies and 
recommends that Congress establish a trauma care systems 
planning and development act. The College and many of the 
national organizations that participate in its ad hoc coalition 
representing patients, hospitals, pre-hospital providers, 
surgeons and many others, agree, and together we urge you to 
fund this program and to fully authorize the amount in fiscal 
year 2000.
    Thank you for the opportunity to present our views, and I 
would be glad to answer any questions.
    [The prepared testimony of Dr. David B. Hoyt follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. Dr. Hoyt, thank you for bringing this 
reauthorized or newly authorized program to our attention. We 
will do the best we can to provide funding. Thank you very 
much.
                              ----------                              

                                           Thursday, April 15, 1999

                 AMERICAN FOUNDATION FOR AIDS RESEARCH


                                WITNESS

JANE SILVER, DIRECTOR OF PUBLIC POLICY, AMERICAN FOUNDATION FOR AIDS 
    RESEARCH
    Mr. Porter. Our next witness is Jane Silver, Director of 
Public Policy, testifying in behalf of the American Foundation 
for AIDS Research.
    Ms. Silver. Thank you. Dr. Rosenfield apologizes. He was 
here and got urgently called back to New York, and he is very 
sorry.
    I thought the better part of valor would be to submit his 
testimony for the record, make his three points and then yield 
back the balance of the time.
    First of all, we would like to thank you for your support, 
both for NIH and for AIDS programs. We are here to add our 
voices to the others in calling for a 15 percent increase in 
NIH. That is the first point. The second point is that AIDS 
research must be part of a broad, well-funded overall research 
effort and that the discoveries made in AIDS are now reaching 
out and touching the lives of thousands of Americans with other 
diseases. We have submitted for the record a document on the 
broad benefits of AIDS research, and how AIDS research is 
affecting heart disease, cardiovascular diseases, even 
hepatitis.
    The third point is that there is a single step that will 
slow the spread of HIV. And that is needle exchange. Injection 
drug use plays an important role in transmission of blood-borne 
infections, and not just for AIDS, but at least one-fifth of 
hepatitis B cases and approximately a half of hepatitis C cases 
are among injecting drug users. There are three reasons to 
allow these programs. The first is that they do not encourage 
drug use. The second is that they decrease HIV transmission, 
and the third is that they increase referral to drug use.
    We would like to thank you for the opportunity to testify. 
I know that of the three points the third is the most 
controversial. But we feel that it is a proven therapy that is 
effective in stopping this deadly disease, and that in 
medicine, if we have a proven therapy and we do not prescribe 
it, it is called malpractice.
    Thank you.
    [The prepared testimony of Allan Rosenfield follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. Ms. Silver, thank you for testifying in Dr. 
Rosenfield's behalf.
    On the third point, I personally agree with what you are 
saying. We have taken up this issue in this subcommittee 
previously. But we are going to be very strict this year about 
not getting into authorizing issues. This really is an issue 
that does not belong before this subcommittee. It belongs under 
Mr. Bilirakis' jurisdiction.
    We are going to be very resistant to providing authorizing 
language in our bill, at least at the subcommittee level. So we 
are undoubtedly not going to take up that issue.
    But I urge you to see Mr. Bilirakis about this and urge his 
action on it.
    Ms. Silver. Great. Thank you very much.
    Mr. Porter. Thank you for testifying.
                              ----------                              

                                          Thursday, April 15, 1999.

                      AMERICAN LIBRARY ASSOCIATION


                                WITNESS

CAROL C. HENDERSON, EXECUTIVE DIRECTOR, WASHINGTON OFFICE, AMERICAN 
    LIBRARY ASSOCIATION
    Mr. Porter. Next is Carol C. Henderson, Executive Director 
of the Washington Office and Associate Executive Director, 
American Library Association, testifying in behalf of the 
Association.
    Ms. Henderson.
    Ms. Henderson. Mr. Chairman, I am indeed Carol Henderson, 
of the American Library Association's Washington office. I am 
very pleased to be here in person during National Library Week 
to thank you for your support of the Library Services and 
Technology Act, the State grant program that reaches Illinois 
and every other State, services to Native Americans. And I very 
much appreciate your efforts to keep the national leadership 
grants under that Act competitive.
    We ask your support of $166,200,000 for the programs 
authorized under LSTA. And we also ask your support for Title 
VI under the Improving America's Schools Act. That is the 
school block grant for educational innovation. it is one of the 
only sources of funding for school library materials. The 
average school library book costs about $16 and the average 
spent on school library materials is less than half a book per 
student per year. So that is definitely a need if we are to 
promote reading and the information skills that students will 
need as future workers.
    I am also pleased to tell you in person that we think 
Congress was wise in 1996 to locate LSTA in the Institute of 
Museum and Library Services. That is been a productive 
partnership with museums. We think it is working well. I am 
glad Diane Frankel was able to testify before you one last 
time. She certainly set a high standard for wise leadership and 
strong professional credentials. She welcomed libraries into 
that agency and made herself accessible and worked hard to 
learn about libraries.
    So we are confident that LSTA will continue to be 
administered responsibly in that agency and with a very 
efficient use of Federal dollars.
    Libraries themselves I think are very efficient users of 
Federal dollars. I truly believe there is no public institution 
that pervades a modest Federal stimulus to greater public 
benefit than libraries do. One of the specific ways that users 
benefit from your support is through getting at health 
information. They use libraries to benefit from the health and 
medical programs that you fund under other parts of this 
appropriation bill and it is very good, I think, that the 
general public is becoming more knowledgeable about healthy 
lifestyles, about how to prevent certain diseases, about 
medications and their interactions.
    And many people who need that information get it from 
libraries and from the librarian to point them to it. There is 
so much information available on the web they need guidance as 
to what are the authoritative and reliable sources of 
information. So funding libraries really helps make the benefit 
of medical research and the programs of the National Library of 
Medicine more widely accessible to more people.
    We are making good progress, I think, thanks to LSTA and 
the E-RATE in making internet and web resources available to 
the general public. What often happens is perhaps a small 
library will get connected for the first time with that help. 
They will perhaps have one or two terminals and a low level 
connection and find that it is so popular with the public, and 
the technology advances so rapidly that pretty soon, that level 
of connectivity and that number of terminals is no longer 
sufficient.
    So libraries are continually having to upgrade the 
connectivity, the hardware and software, the training they 
provide to their staffs and to the public. So our support is 
continuing to be invaluable. It does some really fascinating 
things, like many libraries are turning bookmobiles into 
cybermobiles, that take electronic services and training in how 
to use them out to areas where they have never reached before. 
It is really quite exciting.
    There is in the budget a request for $5,000,000 for 
digitizing library materials for educational purposes. This is 
a big job and a very small amount of money. But we strongly 
support it, because I think it can be leveraged insome very 
useful ways. I will just mention one in closing. Students in Illinois 
and every other State at some point study the history of their own 
State. History really comes alive if students are able to work with 
primary raw materials of history, photos and oral histories and 
original letters and diaries and so on.
    Usually they cannot work with those unique fragile 
materials. But if they are digitized and there are virtual 
versions, that would really be wonderful. I think we have seen 
the Library of Congress' American Memory project show that this 
is very useful in schools, and there are many more such 
treasures of local and State history in libraries, often very 
small libraries, all across the country.
    There will be in a few weeks many library supporters coming 
from all over the country, from Illinois and other States, to 
visit you and your colleagues. We are very pleased to have your 
support, and thank you for the opportunity.
    [The prepared testimony of Carol C. Henderson follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. Ms. Henderson, thank you for your testimony. 
Information technology and communications technology sure has 
changed the job of the librarian and the library itself, has it 
not?
    Ms. Henderson. Yes, it has.
    Mr. Porter. The changes in your field are almost as great, 
maybe greater than the change going on in health care, for 
example.
    Ms. Henderson. I think that is correct. It increases the 
job and the need for the librarian, but it vastly expands the 
useful information that is available at even the smallest 
communities, smallest libraries.
    Mr. Porter. Yes, fascinating. We will do our best. Thank 
you for testifying.
                              ----------                              

                                          Thursday, April 15, 1999.

      NATIONAL ASSOCIATION OF FOSTER GRANDPARENT PROGRAM DIRECTORS


                                WITNESS

JANE H. WATKINS, PRESIDENT, NATIONAL ASSOCIATION OF FOSTER GRANDPARENT 
    PROGRAM DIRECTORS
    Mr. Porter. Our next witness is Jane H. Watkins, President, 
National Association of Foster Grandparent Program Directors.
    Ms. Watkins.
    Ms. Watkins. Mr. Chairman, I certainly appreciate the 
opportunity to be here to testify in support of appropriations 
for the Foster Grandparent Programs. Foster Grandparent 
Programs are the oldest and best known of the three senior 
volunteer programs.
    I have been affiliated with Foster Grandparents for 15 
years, first in Memphis, Tennessee, and now in Orlando, 
Florida. I am here in my capacity as President of the National 
Association of Foster Grandparent Program Directors. I 
represent the interests of 27,000 foster grandparent, low 
income foster grandparent volunteers, 350 locally based program 
directors, and 200,000 special needs children that the foster 
grandparents serve every year.
    My written statement contains details about how the foster 
grandparent program operates in communities, as well as data on 
the impact our programs have on our low income volunteers, the 
children they serve, and the communities that we work and live 
in. I did bring some pictures of some of our successes, if you 
will look to my left here.
    When talking about the foster grandparent program, it is 
difficult not to think about the individual volunteers, like 
Jack Ditkin of Oklahoma City. Jack has learned sign language so 
that he can communicate with his nine foster grandchildren with 
hearing impairments. He tells them about his world travels and 
also helps them with their academics. The children even 
invented a sign for Jack for his name and translated, the sign 
means Jack, our rock and foundation.
    Also, there is Florence Steyer, of Penn's Creek, 
Pennsylvania, who would still be sitting at home alone confined 
to a wheelchair by the diabetes that robbed her of her leg. But 
instead, Florence is helping young Joseph learn to read, and to 
overcome the disabilities associated with fetal alcohol 
syndrome.
    Without the foster grandparent program, these wonderful 
people and thousands of other foster grandparent volunteers 
could not afford to volunteer four hours every day. This is 
what makes our program so unique, and more unique than all the 
other programs. We enable older people living at 125 percent of 
poverty level or less to volunteer 20 hours each week by 
providing them with a small, non-taxable stipend to offset any 
out of pocket expenses that they have as a result of 
volunteering each day.
    We believe that every community in America needs foster 
grandparents, and we believe that every low income senior like 
Jack and Florence deserves the opportunity to be a foster 
grandparent. Given the growing number of low income seniors, 
currently there are 6 million people that are eligible to be 
foster grandparents today. This number will double within the 
next 30 years. The ever-increasing number of children facing 
serious problems, we believe that the Administration's request 
for foster grandparents, an increase of only $1,740,000, does 
not adequately support the kind of growth that we need to 
provide foster grandparent services in each and every 
community.
    In fact, the Administration actually proposes to divert 
funds which could be invested in foster grandparent programs to 
demonstration activities which will perpetuate a practice that 
Congress expressed concerns about last year. And that is of 
providing a non-taxable payment as an incentive to people who 
do not meet any income requirements. As taxpayers, we believe 
that this practice is wrong. We believe that every dollar used 
in this way is a dollar that cannot be used to enable a low 
income older person to serve as a foster grandparent.
    Because of this, we ask you to award no funds to senior 
demonstration for fiscal year 2000. Instead, to support the 
growth that we need, we ask that you allocate a total of 
$104,560,000 to the foster grandparent program to be used first 
to increase the stipend which enables low income foster 
grandparents to serve from $2.55 an hour to $2.60 an hour.
    Second, to provide a 3 percent increase to all 
existingprograms for administrative costs. Third, to allocate one-third 
of any increase to existing programs for expansion grants. And finally, 
to begin 20 new foster grandparent programs in unserved geographic 
areas, like yours, Chairman Porter.
    All told, this funding request will generate opportunities 
for more than 1,900 low income seniors to become foster 
grandparents, and to contribute more than 2 million hours of 
service to nearly 12,000 more special needs children every 
year. Also, 20 communities will receive the multi-faceted 
services of foster grandparents. it is a small step, but it is 
an important first step toward attaining our goal of beginning 
100 new foster grandparent programs over the next five years.
    Please help us tap one of our Nation's increasing natural 
resources, our low income seniors, by supporting a total fiscal 
year 2000 appropriation of $104,560,000 for foster 
grandparents, and no funds for senior demonstration.
    Thank you so much.
    [The prepared testimony of Jane H. Watkins follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. Ms. Watkins, we appreciate your advice on this. 
We think this is a very, very good program. We thank you for 
the work that you and all the senior grandparents and 
volunteers are doing. We are going to listen to what you say.
    Ms. Watkins. Thank you so much.
    Mr. Porter. Thank you for coming to testify.
                              ----------                              

                                          Thursday, April 15, 1999.

                  AMERICAN SOCIETY OF TRANSPLANTATION


                                WITNESS

JOHN F. NEYLAN, PRESIDENT, AMERICAN SOCIETY OF TRANSPLANTATION, MEDICAL 
    DIRECTOR OF KIDNEY TRANSPLANTATION, EMORY UNIVERSITY
    Mr. Porter. John F. Neylan, President, American Society of 
Transplantation and Medical Director of Kidney Transplantation 
at Emory University, testifying in behalf of the American 
Society of Transplantation.
    Dr. Neylan. Mr. Chairman, thank you for the opportunity to 
present testimony on behalf of the American Society of 
Transplantation. The AST is an organization comprised of 
physicians, surgeons and scientists who have devoted their 
lives and their research to the practice and translation of 
transplantation medicine and immunobiology. This organization 
represents the majority of these professionals in the United 
States.
    Next month, our 18th annual scientific annual meeting will 
attract an international attendance to the city of Chicago, and 
will feature the cutting edge science that is opening new 
frontiers in transplantation medicine and immunobiology. We are 
grateful, Mr. Chairman, that members of your staff will be 
participating in our meeting as well. Today my testimony will 
focus on fiscal year 2000 appropriations for the National 
Institutes of Health, with special emphasis on transplantation 
research.
    In my written testimony, I have highlighted those areas of 
research that we believe need additional emphasis, and I will 
not be covering them in my oral testimony now. During the next 
hour, four new names will join the nearly 58,000 individuals in 
this country who are awaiting a solid organ transplant. By the 
time I get home to Atlanta this evening, 10 individuals will 
have died because the wait for a transplant was just too long.
    There is an unfortunate and absolutely unnecessary fact 
that we as a Nation are not living up to our potential. Too 
many families are turning down the option of organ donation. 
But Mr. Chairman, with increased funding for research, there is 
hope. Over the last 30 years, transplantation of solid organs 
has moved from experimental to accepted therapy with 
approximately 20,000 performed in 1998 in the U.S. alone. The 
success of this procedure has improved greatly over the last 
five years, with almost all solid organ recipients now enjoying 
an 83 to 97 percent one-year survival.
    Much of this success can be attributed to research in 
immunosuppression and basic science that has been funded by 
previous Federal appropriations. Our better understanding of 
the body's response to foreign proteins has also led to 
countless other breakthroughs in all areas of medicine.
    However, this success has brought with it new challenges. 
Research is central to all that occurs in the transplantation 
process. The AST believes that we are on the threshold of many 
important scientific breakthroughs in areas of transplantation 
research, such as better understanding of immune mechanisms of 
rejection, and immunologic tolerance, as well as the response 
to animal organs and tissues, the so-called xenographs.
    Because of this, AST strongly urges the subcommittee to 
continue its leadership in the area of biomedical research and 
provide a 15 percent increase in the funding for NIH for fiscal 
year 2000. By providing this increased level of funding, this 
subcommittee will achieve the ultimate goal of doubling the NIH 
budget that Congress has committed to by fiscal year 2003.
    To truly translate the promise of scientific discovery into 
better health for all Americans, the President, the Congress 
and the American people must continue the commitment to 
significant sustained growth for NIH funded research. The 
fruits of current transplant research have engendered the 
important successes that have been accomplished in the field 
today while still offering continued and new challenges. Ever 
more precise and powerful transplant immunosuppressive agents 
have greatly increased both patient and graft survivals.
    However, despite our successes, almost half of kidneys are 
eventually lost to premature patient death with a working 
transplant, which creates the challenge of better understanding 
the morbidity in the pre-existing and concomitant illnesses, 
such as cardiovascular disease, hypertension, infections, bone 
disease, diabetes and cancers.
    Strategies to induce donor specific tolerance in animal 
models hold great promise for the future. So too do strategies 
to hurdle the xenogeneic barriers, using molecular genetic 
tools. These have begun in earnest. Expansion of these efforts, 
taken together with experiments characterized above and also 
within the written testimony may again bring the dream of 
successful replacement of a failed organ to the natural 
lifetime of a patient to ultimate fruition.
    We talk quite a bit in the transplant community about 
receiving a transplant and how it can be the gift of life. We 
cannot put a price tag in human terms on such a gift. Yes, a 
transplant procedure and the care that follows is expensive. 
But relative to the lost productivity, the impact on the 
quality of life, and the cost of living with end stage heart or 
liver or kidney disease, transplantation is indeed very cost 
effective.
    Also, it may be the only hope, not just for improved 
survival, but for a full and healthy life for many individuals 
and their families.
    So I end my remarks here today by repeating AST's request 
to you to approve a 15 percent increase for the NIH and 
continue on track with the goal of doubling that budget over 
the next five years, and thus allow the high priorities and 
initiatives that we have discussed to be funded and to reach 
fruition.
    Thank you, Mr. Chairman.
    [The prepared statement of John F. Neylan follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. Thank you, Dr. Neylan.
    Can I ask some questions? Is it true that if is preferable 
to get organs from a younger person rather than an older one, 
or in some cases, does that make no difference at all?
    Dr. Neylan. Well, the answer is true and true. In the case 
of a kidney or a heart, it typically is a better solution to 
find a younger donor. But because of the liver's very dramatic 
capacity for regeneration, livers from older individuals very 
often behave in very much the same way as those from younger.
    Mr. Porter. If an individual died at middle age, let us say 
from colon cancer, would that individual still be a candidate, 
his or her liver still be a candidate for transplantation, or 
would that disqualify that organ?
    Mr. Neylan. The problem in failsafing, vouchsafing the 
organ supply of this country is that we have to go to great 
lengths to make sure that we are not transmitting any sort of 
disease, infectious or malignant. So an individual with an 
established malignancy, such as a colon cancer, would not be 
considered a suitable organ donor.
    Mr. Porter. I assumed that, but I had never heard anyone 
tell me that, and I thought I might ask.
    Again, we are going to try to do what you want us to do. 
Thank you for testifying.
    Dr. Neylan. Thank you, Mr. Chairman.
                              ----------                              

                                          Thursday, April 15, 1999.

                  NATIONAL MULTIPLE SCLEROSIS SOCIETY


                               WITNESSES

STEPHEN REINGOLD, VICE PRESIDENT, RESEARCH PROGRAMS, NATIONAL MULTIPLE 
    SCLEROSIS SOCIETY
SUSAN SONABRIA, VICE PRESIDENT, ADVOCACY PROGRAMS
    Mr. Porter. Our next witness is Dr. Stephen Reingold, 
Ph.D., Vice President, Research Programs for the National 
Multiple Sclerosis Society, accompanied by Susan Sonabria, the 
Vice President for Advocacy Programs for the Society and a 
former staffer of mine. Sue, it is nice to see you.
    Dr. Reingold, thank you for being with us.
    Ms. Sonabria. it is a privilege and a pleasure to see you 
again.
    We are talking today about funding for the National 
Institutes of Health, of course. For the country to take full 
advantage of the 15 percent funding increase that Congress 
appropriated to NIH in fiscal year 1999, this rate of increase 
cannot be a one-time event, because it would thwart the ability 
of NIH to plan for growth. When the White House recommended 
such a small increase for NIH funding for fiscal year 2000, we 
saw the need to present our best case for continuation of last 
year's rate of increase.
    Although a client with MS usually represents the Society 
and testifies to the importance of research at NIH from a 
patient's perspective, this year we wish to discuss our 
relationship with NIH. We are doing this to illustrate how this 
interaction helps with our own research effort. We believe that 
this interaction is mutually beneficial.
    With me today is Dr. Reingold, Vice President of Research 
Programs. He is the best person to talk about our relationship 
with NIH, and with your permission, I would like to turn the 
rest of the presentation over to Dr. Reingold.
    Dr. Reingold. Thank you, Mr. Chairman. Thank you, Susan.
    As noted, I am Stephen Reingold. I am the Vice President 
for Research Programs for the National Multiple Sclerosis 
Society. In my position with the National MS Society, I have 
the responsibility for the Society's portfolio of basic and 
clinical research related to multiple sclerosis, and also the 
responsibility for the decision making process that we use, a 
peer review system, to decide on funding for projects related 
to multiple sclerosis that come to the National MS Society.
    Throughout our 53 year history, the National MS Society has 
invested more than $260,000,000 in basic and clinical research 
related to multiple sclerosis. So we clearly understand both 
the difficulty of meeting the overwhelming need for basic and 
clinical research and also the task, and a daunting task it is, 
of allocating relatively limited resources among many worthy 
projects.
    The National Institutes of Health plays the major role in 
maintaining the country's preeminence in biotechnology. The NIH 
provides world-wide leadership in health research and 
discovery. The National MS Society could advocate here today 
for specific research programs related to multiple sclerosis. 
But we do not. Rather, we recognize that new discovery and new 
breakthroughs for MS could come from virtually any area in 
biomedical research.
    So we encourage Congress and your subcommittee to focus on 
the National Institutes of Health as a whole. Today I am going 
to be emphasizing a couple of the agencies at the NIH of 
particular relevance to our concerns.
    As you probably know, multiple sclerosis is an often 
progressive degenerative disease of the central nervous system, 
the brain and spinal cord. It affects some third of a million 
Americans. It is unpredictable in its course, devastating in 
its medical, personal and financial impact for individuals, 
families and for the Nation as a whole.
    Ending the devastating effects of MS, which is the goal of 
the National MS Society, is completely dependent upon the 
discovery of treatments that can halt the progression of the 
disease and reverse the damage that has already taken place as 
a consequence of the disease. In our history, we have had a 
very long and productive relationship with the National 
Institutes of Health, and particularly with the National 
Institute of Neurological Disorders and Stroke at the Neurology 
Institute.
    The founder of the National MS Society, Ms. Sylvia Lowery, 
spearheaded the effort that actually led to the creation of the 
Neurology Institute at the NIH in 1950. And today, the NINDS 
takes into account approximately 75 percent of all the research 
funding related to MS that takes place atthe NIH. So it is the 
largest single agency of relevance to multiple sclerosis at the NIH.
    The MS Society works closely with the NINDS to coordinate 
basic and clinical research. When scientists seek support from 
both the Society and the NIH for similar or related research 
programs, we end up with fruitful negotiations with the NIH to 
ensure the appropriate levels of funding and to make sure that 
there is not more funding than is necessary going to individual 
projects. So we collaborate and cooperate with research 
funding, rather than compete or overlap.
    Scientists from the Neurology Institute, intramurally, and 
those funded extramurally, serve as dedicated volunteers on our 
own scientific peer review committees, and help the Society 
make research project decisions. This process and this 
interaction helps to ensure that the work of the MS Society in 
support of MS research is in concert with that of relevant 
parts of the NIH.
    We were pleased in the past year to welcome a new director 
to the Neurology Institute, Dr. Gerald Fischbach, and honored 
when he asked us to provide comments on proposed strategic 
research plans for the Neurology Institute for the fiscal year 
2000. Priority areas in the Neurology Institute which relate to 
nervous system function and structure and genetics and to 
understanding and treating neurologic disease target both basic 
research knowledge and applied clinical development. Each of 
the targeted areas in the Neurology Institute's strategic plan 
is of vast importance to many different neurologic disorders, 
and each has direct applicability to multiple sclerosis as 
well.
    But since the root problem of multiple sclerosis is 
immunologic in nature, the Society also has close working 
relationships with the largest primary NIH institute charged 
with understanding the immune system, the National Institute of 
Allergy and Infectious Diseases, or NIAID. And NIAID funds 
approximately 25 percent of the MS related research that is 
ongoing at the NIH.
    Scientists from NIAID both intramurally and those funded 
extramurally also serve as peer review committee members for 
the National MS Society and help us make our research decisions 
as well. We participated in the NIAID's autoimmune disease 
coordinating committee, which was constituted in this past 
year, and is assessing broad based support of autoimmune 
disease research at the Federal level and throughout the United 
States, at private agencies as well, and plotting a future 
strategy for autoimmune disease research.
    Over the past several months, NIAID staff contributed 
enormously to our own efforts to understand and analyze gender 
differences, female, male differences in multiple sclerosis and 
other autoimmune diseases. So in all this, as Susan was saying 
earlier, our work to help support biomedical research related 
to multiple sclerosis is directly related to the work that 
happens at the National Institutes of Health. Together, we are 
able to cooperate to ensure that more high quality research, 
basic and clinical, is funded.
    We would also like to support a further 15 percent increase 
in NIH funding for fiscal year 2000, which would bring us 
closer to doubling the NIH budget by the year 2003. In order to 
pursue cutting edge research related to multiple sclerosis, we 
hope that this translates into a parallel 15 percent increase 
in support of the Neurology Institute and also NIAID, the two 
institutes at NIH which conduct virtually all of the Federal 
support of multiple sclerosis research today.
    Thank you for your time and the opportunity to testify.
    [The prepared testimony of Steven Reingold follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. Dr. Reingold, if I understand correctly, you do 
your own peer reviewing for your own research proposals, but 
you use some of the same people who might be doing peer review 
for NIH?
    Dr. Reingold. Generally we try and avoid using some of the 
same people, because you do not want to put an applicant for 
research funds into a double jeopardy. But we will use people 
who are either intramural scientists working at the NIH campus 
in Bethesda, or people who actually themselves may have 
research funds from the NIH.
    Mr. Porter. I see. But you make your decisions 
independently and on a different peer review basis than NIH 
would do?
    Dr. Reingold. Completely independently. One of the things 
that we do that is rather different than the National 
Institutes of Health is not only of course are we looking for 
the highest scientific quality in proposals that come to us for 
research or training, but we look specifically for relevance 
and impact of questions that are proposed to us to the disease 
multiple sclerosis. This relevance consideration to specific 
diseases is something that doesn't take place in the NIH peer 
review.
    Mr. Porter. Do you ever partner with NIH to provide 
additional funding for something they may be doing?
    Dr. Reingold. We have partnered with the NIH to support 
additional funding related to gene searches for genetic 
susceptibility to multiple sclerosis. We are in the process 
right now of negotiating a partnering activity with the 
Neurology Institute in support of an innovative clinical trial 
on a vaccination approach to multiple sclerosis as well. So 
this does take place.
    Mr. Porter. I do not know how many of what I call the 
patient advocacy groups do what you do, but it is very 
interesting to me how you go about doing it, and I appreciate 
your bringing this kind of testimony to us today and giving us 
a greater understanding. It sounds like it would be a model for 
what others ought to do as well.
    Dr. Reingold. I like to think that we couldn't do our job 
without the Neurology Institute and the NIAID, nor could they 
do their jobs related to multiple sclerosis without the 
involvement and activities of the MS Society.
    Mr. Porter. Sounds like a wonderful partnership. Thank you 
very much.
    Ms. Sonabria. Mr. Porter, if I might, I'd like to introduce 
to you our chairman, our president and CEO, Mike Dugan, General 
Mike Dugan.
    Mr. Dugan. I admire your persistence, Mr. Chairman.
    Mr. Porter. Thank you very much. Thank you, Dr. Reingold.
                              ----------                              

                                          Thursday, April 15, 1999.

                   AMERICAN ASSOCIATION OF ANATOMISTS


                                WITNESS

DR. BRUCE M. CARLSON, M.D., PRESIDENT, AMERICAN ASSOCIATION OF 
    ANATOMISTS, PROFESSOR AND CHAIRMAN, DEPARTMENT OF ANATOMY AND CELL 
    BIOLOGY, UNIVERSITY OF MICHIGAN MEDICAL SCHOOL
    Mr. Porter. Our last but not least witness, Dr. Bruce M. 
Carlson, M.D., Ph.D., President of the American Association of 
Anatomists, and Professor and Chairman of the Department of 
Anatomy and Cell Biology at the University of Michigan Medical 
School, testifying in behalf of the American Association of 
Anatomists.
    Dr. Carlson.
    Dr. Carlson. First of all, greetings from one of your alma 
maters.
    Mr. Porter. I had all three of them before us today.
    Dr. Carlson. First of all, I'd like to convey the heart-
felt thanks of the members of our association to you for your 
support of biomedical research over the years. Because I am 
last in the docket today and you are so familiar with many of 
the normal arguments, I thought that I would just give you a 
couple of discipline-specific examples of the impact of NIH 
research in relation to some very anatomy unique topics.
    One of them that I'd like to talk about is the Visible 
Human project, which is a brainstorm of the National Library of 
Medicine. About 10 years ago they thought that it would be a 
very good idea to try to acquire a digital anatomical data base 
of the human body. They let out some contracts in the early 
1990s that resulted in two human bodies being frozen and 
sectioned in up to 5,000 sections from head to foot, 
accumulating a digital anatomical data base of about 40 
gigabytes.
    This was considered an experiment, wondering whether there 
would be any application or not. But in the last two years, the 
National Library of Medicine has let out approximately 1,150 
licenses to educational institutions and companies in all of 
the States except South Dakota and 41 different countries, 
exceeding by far any expectation of the utility of this data 
base, which is providing unparalleled views of the human body.
    Just today, as a matter of fact, an RFA went out for 
producing educational applications from this data base. I think 
within probably 10 years, every medical and dental student in 
this country will have used the Visible Human project 
educational applications in part of their educational training 
and professional training as well, when they get to the 
residency stage.
    As a member of FASEB, the American Association of 
Anatomists recommends also a 15 percent increase in funding of 
the NIH. Some of the areas that we in particular are interested 
in are maintaining investigator-initiated grants, especially 
maintaining continuity of funding. You mentioned early today 
the problems of boom and bust funding. At the level at which 
you are dealing, this is very important. It is also very 
important at the individual investigator level to have funding 
that would lead them through the periods of lean times when 
their grant application was not funded, and often local 
institutional grants are the way to do this.
    We are also very much aware, as are you, of the importance 
of infrastructural funding, not only buildings, but advanced 
technology. This not only goes to instruments, but things like 
maintaining colonies of genetically altered animals as well.
    We also feel that it is very important to continue the 
training of scientists in the early components of their career, 
not only graduate education, but post-doctoral training. Many 
people are not aware of the fact that it takes as long to turn 
a new Ph.D. into an independent researcher as it does to take a 
freshly minted M.D. and turn that person into a surgeon, for 
instance.
    We are also very supportive of the entry of minority 
students into biomedical research education. In fact, this next 
week, the experimental biology meetings, which is a FASEB 
related meeting, will be held in Washington. I will be 
introducing Dr. David Satcher to a group of minority high 
school and college students to try to again stimulate them into 
entering biomedical research.
    The last thing we would like to talk about is translation 
research. Although this is not directly related to much of what 
anatomists do, it is a very important thing to reduce the time 
from bench discoveries to bedside application.
    Lastly what I would like to talk about is something that is 
very much in the minds of people in the legislative bodies, 
which is embryonic stem cell research. I myself am an 
embryologist, I write books in the field and I am very much 
aware of the potential of embryonic stem cell research. But I 
am also very much aware of the heart-felt ethical dilemma that 
affects some people who are concerned, especially about the 
origin of these cells. I think it is very important that this 
process both be people who are proponents and the people who 
are nervous about it, that it just be really given due process.
    In closing, I really would like to thank you again for your 
support for this whole research endeavor. it is a reflection of 
the American people's confidence in biomedical research. 
Speaking for at least one segment of these researchers, I hope 
that we can really sustain this confidence and prove that we 
are using the money wisely.
    [The prepared testimony of Dr. Bruce M. Carlson follows:]

[GRAPHIC(S) NOT AVAILABLE IF TIFF FORMAT]

    Mr. Porter. Dr. Carlson, that was very impressive. You did 
that without a single note.
    I want to ask you about what you meant by due process in 
respect to embryonic stem cell research. Do you agree with the 
Administration's or the Department's interpretation?
    Dr. Carlson. Yes, I think due process is listening to all 
sides very carefully, and then ultimately, someone is going to 
have to make the judgment of what is an appropriate stance for 
the Government to take. I get the sense that there is much less 
concern about using stem cells once they exist than the 
mechanism by which they are obtained. They often are obtained 
from frozen embryos that frankly are left over from in vitro 
fertilization.
    Mr. Porter. I think that is not accurate. I think the 
concern is directly with the source from which they are 
obtained.
    Dr. Carlson. Yes.
    Mr. Porter. As you know, there was a prohibition put in by 
Congress on human embryo research. The Administration has 
interpreted that to allow stem cells from the source you just 
mentioned, that is excess or unused embryos coming from 
fertilization projects. We expect that there will be an 
amendment offered to try to overturn the judgment of the 
Administration in that regard in this cycle. I have said fairly 
publicly that I do not want to see NIH's funding get involved 
in a long battle over this issue.
    Dr. Carlson. I think it is important to separate them.
    Mr. Porter. I think it is, and I do not want people to 
think that this is all NIH is about, even though I agree with 
the Administration's interpretation. In fact, I disagree with 
the law the way it is written now. I think there should be 
greater freedom.
    But I am also, as you are, very sensitive to many of the 
concerns of many other people that disagree with that position. 
I hope that we can work it out. I do not think so. I think it 
will be an issue that will be fought out in the legislative 
halls. In the end, I think the Administration's interpretation 
will continue. But it is a very difficult and a very sensitive 
area that all of us have to be concerned about.
    Dr. Carlson. We have to recognize we are living in a 
democracy.
    Mr. Porter. Absolutely. That is what it is all about.
    Thank you very much for coming to testify.
    The subcommittee will stand in recess until Tuesday, April 
20th, at 2:00 p.m.
                                           Tuesday, April 20, 1999.

                        MEDICAL RESEARCH FUNDING

                                WITNESS

MARY WOOLLEY, PRESIDENT AND CEO, RESEARCH! AMERICA
    Mr. Bonilla [presiding]. Good afternoon. The subcommittee 
will come to order. My name is Henry Bonilla from Texas, and I 
am filling in today for Chairman John Porter.
    Today, we will hear from public witnesses and, as we begin 
this hearing, I want to remind witnesses of two provisions in 
the rules of the House. In addition to their written statement, 
non-governmental witnesses must submit a curriculum vitae and a 
statement of Federal grant or contract funds they or the entity 
they represent have received. If you have any questions 
concerning the applicability of this provision or questions as 
to how to comply, please contact the subcommittee staff.
    In order to accommodate as many members of the public as 
possible, we have scheduled over 20 witnesses for each session 
and are still not able to hear from all who wanted to testify. 
Overall, we will hear from over 200 witnesses alone. As a 
result, I have to enforce the rule, limiting testimony to five 
minutes, very strictly. I would ask that as you testify you 
keep this limitation in mind in consideration for the other 
witnesses that must follow. And, also, please remember that all 
of your testimony will be entered into the record and will be 
reviewed by every member of the subcommittee.
    At this time, if we could begin with Mary Woolley, the 
president and CEO of Research! America. Welcome.
    Ms. Woolley. Good afternoon. Research! America is a non-
profit advocacy public education alliance, and we are 
privileged to be with you today. What we do is listen to the 
voice of America via polls and focus groups. The messages we 
have been hearing are remarkably consistent and overwhelmingly 
clear. People sense that the opportunity to cure, treat, and 
prevent disease and disability has never been greater, and they 
are right. People also think that there is no reason to wait to 
realize the promise of research. In fact, Americans believe 
that Federal support for research should be more consistent 
scientific opportunity. So, how do we do a better job of mining 
current scientific opportunity? Well, we do it by putting more 
research to work. Doubling our national commitment to medical 
research is endorsed by alliances like ours, the Ad Hoc Group 
for Medical Research Funding, and countless professional 
societies, voluntary health agencies, and ordinary Americans. 
We will show you now, via the first chart here, that support 
for doubling our national commitment to medical research has 
grown markedly in the past year along from 60 percent to 68 
percent.
    Now, these are poll data from surveys conducted in January 
and February of this year in Colorado, New Jersey, New Mexico, 
and Illinois. They add to poll data that we have collected in 
21 other States as well as nationally.
    Now, the increase in support you see here, from 60 to 68 
percent, comes on the heels of last year's omnibus agreement 
that increased NIH funding by 15 percent. I believe that these 
data represent public endorsement of just such an increase as 
well as a mandate for continuing the momentum. Please note, 
that not only has support for doubling increased, but there has 
been a decrease in the percentage of respondents who say they 
don't know enough about the issue to have an opinion, from 14 
percent just last spring to only 8 percent a few months ago. I 
think, in part, this is an illustration of the fact that the 
research community is doing a better job of communicating with 
the public about research.
    Well, just as significant is public opinion regarding how 
the Nation should pay for such increases, and, as we will see 
on the next chart, our latest data show a health majority, some 
60 percent of respondents, would be willing to pay an extra $1 
dollar per week in taxes if those dollars went to medical and 
health research programs.
    These data endorse the increase appropriation of tax 
dollars to research that this committee has spearheaded in the 
last few year.
    Another way to fund doubling our national investment in 
research is to capitalize on our strong economic times, and 
that could mean using a portion of the Nation's budgetsurplus 
to fund research, not only Research! America but also the Lewis Harris 
Organization, nationally, has demonstrated that a majority of Americans 
believe medical research would be an appropriate recipient of funds 
from the budget surplus.
    Additional poll data show that working to streamline and 
rationalize regulation--the next one--as NIH is now doing in 
response to requests from the Congress, is, in fact, consistent 
with citizens' perceptions of why we aren't making more 
progress in medical research.
    You can see here that 67 percent of those polls cite 
regulatory barriers and taxes as the number one reasons we are 
not moving faster, and you will also note that the public says 
we are not spending enough money.
    Well, in the last couple of years, Research! America has 
not only been gathering public opinion data but also helping 
members of the scientific community talk to the public more 
effectively. We have run workshops for scientists and arranged 
editorial board meetings and have developed ways to make sure 
that members of the research community are constantly and 
effectively communicating to members of the public that, ``I 
work for you.'' We know where the research dollars come from, 
and we know that it is the public that depend on research for 
continued hope and for progress and excitement in science.
    To sum up, researchers are doing more research, and they 
are also taking more responsibility for communicating about 
research to the public. Research! America polls show that 
Americans support developing a robust research enterprise. The 
polls indicate that people support doubling funding over a 
five-year period, and they are willing to pay for it.
    Just briefly, to put funding for research in context, this 
Nation spends two times more on candles and accessories for 
candles in a single year than what it would take to make second 
downpayment on doubling the NIH budget. Why not help assure 
that we can live long enough and in good health to enjoy those 
candles at dinners and relaxing aromas by suspending the 
momentum begun last year--by sustaining the momentum begun last 
year to double the budget for the NIH. New, important 
preventions, treatments, and cures are all at hand but only 
with the continued leadership of you and your colleagues on 
this committee. Thank you very much.
    Mr. Bonilla. Thank you, Ms. Woolley, and thank you for 
acknowledging this subcommittee's strong support for which you 
are testifying here today. We appreciate you being here.
    Ms. Woolley. Thank you.
    [The prepared statement of Mary Wooley follows:]

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                                           Tuesday, April 20, 1999.

                        DEPARTMENT OF EDUCATION


                                WITNESS

DAVID M. GIPP, PRESIDENT, UNITED TRIBES TECHNICAL COLLEGE
    Mr. Bonilla. Next, we have David Gipp who is president of 
United Tribes Technical College. Mr. Gipp.
    Mr. Gipp. Thank you, Mr. Chairman. It is an honor and 
privilege to be here before you and members of the 
subcommittee. We appreciate the opportunity to present our 
testimony, and we would request that our testimony be made a 
part of the record.
    Mr. Bonilla. It will.
    Mr. Gipp. Mr. Chairman, I represent the United Tribes 
Technical College which is an inter-tribal college which serves 
up to 40 different tribes from throughout the United States, 
and we are located in Bismarck, North Dakota, and we have been 
serving Native American families for the past 30 years, 
principally in the area of trying to work with the 
comprehensive approach to trying to redevelop our own American 
Indian families and get them on the road to economic self-
independence as well as social and cultural kinds of 
considerations that are very important. As a result, we offer a 
very comprehensive set of services, which include early 
childhood services, K through 8 elementary school are our 
vocational and other academic programs on a 105-acre campus 
that was formerly a military fort that was turned over to us in 
the very late 1960's.
    Mr. Chairman, our request for this particular session is 
with regard to the Department of Education for Fiscal Year 2000 
for tribally-controlled, postsecondary vocational institutions 
for which we are one, and it is authorized under the Carl 
Perkins Vocational and Applied Technology Act for an amount of 
$5 million, or $900,000 over the Fiscal Year 1999 enacted 
level.
    This funding is essential to our survival as we have 
received no State appropriated vocational education monies, and 
the State legislature in our State refuses to do so. We also 
bring to your attention and support funding recommendations of 
the American Indian Higher Education Consortium of which we are 
a member, and that consortium represents all the existing 
tribal colleges and universities throughout the United States 
of which there are a total of 32, counting ourselves.
    The administration's request under Carl Perkins Voc Ed Act 
of 1998 authorizes funding for tribally controlled 
postsecondary voc ed institutions, as I have mentioned before, 
and under this authority and also under the prior version of 
the act, funding is currently provided for our type of 
institution and one other institution called the Crown Point 
Institute of Technology out of Crown Point, New Mexico. The 
administration's request of $4.1 million is the same as the 
Fiscal Year 1999 level.
    There is a glitch, however, in the newly reauthorized 
Perkins Act in that it caps funding for these particular 
institutions at $4 million instead of the authorizing such sums 
as may be necessary in the out years as is the case for other 
vocations educational programs. We believe this was inadvertent 
issue, and we ask for a technical corrections to provide for 
such sums as may be necessary for Fiscal Year 2000 for these 
particular institutions, Mr. Chairman.
    With regard to our institution, I would just mention that 
we offer 8 certificate programs, 13 associate of science 
degrees, and we have most recently added, as an example, for 
your information, a new program called the Injury Prevention 
Program which is quite relevant to most of our tribal 
communities throughout the United States, particularly when we 
have injuries and other kinds of death rates that are 2.8 times 
the national average when we look at Indian health statistics. 
This course is the first of its kind to be offered either at 
the two-year or even four-year level, and there are only five 
graduate programs in the United States. We believe it is a very 
relevant program to begin to reattune our various tribal 
communities to the issues of injury prevention, and the range 
is those that relate to traffic-related injuries, prevention of 
injuries due to violence, and even those issues related to 
health themselves--diabetes, for example, is one the parts of 
that curriculum. We have some of the most difficult 
circumstances when it comes to the statistics relative to 
diabetes, heart disease, and those kinds of issues.
    Mr. Chairman, we also work very closely with things like 
the Temporary Assistance for Needy Families. We have a very 
good success rate with respect to working with children and 
families relative to that area, and, as I have mentioned, we 
offer an array of services for our student population. Our 
population is roughly 600 when you count the men, women, and 
children that come to our campus, and, in many cases, we have 
American Indians who wait anywhere from 18 months even up to 4 
years to come onto our campus because of, again, the 
comprehensive services that we have provided American Indian 
families over the past 30 years.
    I should also mention in final closing, Mr. Chairman, I 
have mentioned the American Indian Higher Education Consortium 
and that there are 32 college members throughout the United 
States. We do support their request relative to the 1998 Higher 
Education Act amendments, and we also note that this is 
approximately $10 million under the title 3 section of that 
program which would be set aside for tribal institutions, and 
we urge continued support of those requests.
    Mr. Chairman, in closing, that is at least the summary, and 
I shall leave the rest for the record in my statement.
    Mr. Bonilla. Thank you very much for your testimony, Mr. 
Gipp, and we will certainly do what we can on the subcommittee.
    Mr. Gipp. Thank you very much.
    [The prepared statement of David M. Gipp follows:]

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                                           Tuesday, April 20, 1999.

  NATIONAL INSTITUTES OF HEALTH, NATIONAL INSTITUTE OF ARTHRITIS AND 
                   MUSCULOSKELETAL AND SKIN DISEASES


                                WITNESS

DAVID A. NORRIS, M.D., PROFESSOR OF DERMATOLOGY, UNIVERSITY OF 
    COLORADO; CHIEF OF THE DERMATOLOGY SERVICE, DEPARTMENT OF VETERANS 
    AFFAIRS HOSPITAL, DENVER, AND PRESIDENT, SOCIETY FOR INVESTIGATIVE 
    DERMATOLOGY
    Mr. Bonilla. Next, we have Dr. David A. Norris, professor 
of dermatology at the University of Colorado, chief of 
dermatology service at the Department of Veterans Affairs 
Hospital in Denver, and president of the Society for 
Investigative Dermatology. Representing the Society for 
Investigative Dermatology, Dr. Norris, your work stretches to 
all parts of the country. I have even received constituent mail 
on what you do in my area. So, I am glad you are here, and you 
may proceed.
    Dr. Norris. Thank you very much, Mr. Chairman and 
subcommittee members. My name is David Norris, and I gratefully 
take this opportunity to testify on behalf of the Society of 
Investigative Dermatology of which I am president.
    I, first, want to thank you for your role in initiating the 
process to double the NIH budget over the next five years, 
which all of us who work in medical research greatly appreciate 
and are inspired by your efforts.
    The Society for Investigative Dermatology has as its 
mission the support of research in skin diseases. Our 2,000 
members include scientists and physician members from 
universities, hospitals, and industry committed to the science 
of dermatology. The members of our society know that research 
is critical to improve prevention, diagnosis, and treatment of 
the 60 million Americans afflicted with skin diseases.
    My purpose in being here today is to personally emphasize 
the need for increased funding of the programs of the National 
Institutes of Arthritis Musculoskeletal and Skin Diseases, 
NIAMS. We support the proposal of the Ad Hoc Research Group for 
Medical Research Funding, which calls for a 15 percent increase 
in funding in the NIH in Fiscal Year 2000 as a necessary step 
toward doubling the NIH budget over 5 years. We recognize the 
difficulty in achieving this goal under the current spending 
limits, and we encourage Congress to explore all possible 
options to identify the additional resources needed to support 
this increase. We support an increase in 15 percent, 
specifically, for NIAMS as well.
    There are more than 3,000 different diseases of the skin, 
hair, and nails which in an average year afflict about 60 
million Americans. The combined annual cost to society of 
medical care and lost wages for these individuals and these 
conditions is estimated to be $7 billion. The potential cost to 
individuals from these conditions includes discomfort and pain, 
disfigurement, disability, dependency, and sometimes death.
    The past two decades have witnessed an explosive growth in 
technology and an increased sophistication in our understanding 
of the mechanisms, both genetic and cellular, underlying many 
of these skin diseases. This understanding has produced 
important clinical benefits which are now being applied in 
dermatology clinics around the country. For example, skin can 
now be purchased, readily made, for grafting burns, chronic 
ulcers, and pressure sores; lasers are now possible that can 
allow scarless removal of disfiguring skin defects; modern 
phototherapy allows more effective treatment of cutaneous 
malignancies, inflammatory skin diseases, depigmenting 
disorders, and auto-immune diseases; genes responsible for skin 
cancer and for multi-inherited skin diseases have been 
identified leaving the way for more rational treatment. The 
mechanisms of auto-immune and inflammatory skin diseases are 
better understood which allows for focused, selective 
immunosuppressive therapy with greater safety and efficacy.
    I would like to approach the Chair just to show one example 
of the kinds of advances that we find in clinics today. This is 
some patient material showing healing of chronic ulcers on the 
lower extremity, in this case, in the patient, the lesions were 
there for two years; in this case, 1 year, and the final case, 
an 8-year duration ulcer healed with the application of 
artificial skin. So, in this one patient, a lesion, an ulcer, 
requiring hospitalization treatment and antibiotics for 8 
years, quickly healed by an application of artificial skin. 
This is an example of a tablecloth of artificial dermis on 
which the outer layer of the skin, the epidermis, is grown, and 
this, then, can be placed on patients allowing the healing of 
wounds, the grafting of burns, of healing blisters that are 
present for years in patients with inflammatory and genetic 
blistering disorders.
    This is a major breakthrough that allows patients to, at 
small cost, be able to eliminate painful and disabling ulcers 
on the skin. These kinds of advances were developed with years 
of NIH funding in labs in basic science, in clinical science 
departments, in cell and molecular biology departments and 
eventually taken by biotech and applied to patients. This is 
the bridge between NIH funding and the health and comfort and 
well-being of our patients and citizens.
    Thank you, Mr. Chairman and subcommittee members for this 
opportunity to speak to you today, and, again, I thank you for 
your leadership in initiating the process to double the NIH 
budget, and I will be pleased to any questions you might have.
    Mr. Bonilla. Thank you, Dr. Norris. Your testimony is very 
impressive, and we appreciate your efforts.
    [The prepared statement of David Norris, M.D., follows:]

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                                           Tuesday, April 20, 1999.

              U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES


                                WITNESS

ERNEST HOPKINS, DIRECTOR OF FEDERAL AFFAIRS, SAN FRANCISCO AIDS 
    FOUNDATION
    Mr. Bonilla. We next have Ernest Hopkins who is director of 
Federal Affairs for the San Francisco AIDS Foundation.
    Mr. Hopkins. Good afternoon, Mr. Chairman and staff and 
other members of the committee. My name is Ernest Hopkins, and 
I am the director of Federal Affairs at the San Francisco Aids 
Foundation. I come before you today to request the committee's 
support for important increases in Fiscal Year 2000 funding for 
a number of Federal HIV/AIDS-related programs administered by 
Health and Human Services.
    The San Francisco AIDS Foundation was established in 1983 
as a private community-based response to what was at that time 
still an emerging public health emergency. Today, the AIDS 
Foundation provides direct services to approximately 3,000 
people living with HIV disease and reaches another 145,000 
through our prevention campaigns, treatment publications, toll-
free information hotline, public policy, and community outreach 
efforts.
    The San Francisco AIDS Foundation clients continue to 
reflect the fact that, increasingly, the HIV epidemic is 
affecting disenfranchised populations with multiple problems in 
addition to HIV disease. They include homelessness, substance 
abuse, mental health issues. Fully, 40 percent of our clients 
are people of color; 84 percent are male, and the majority of 
the clients have monthly incomes under $750. Fifty-eight 
percent of the foundation's clients are gay and bisexual men, 
however, at this time, we are increasingly seeing a number of 
heterosexual transmissions in the City of San Francisco.
    I want to thank the committee, first of all, yourself, our 
Congresswoman Nancy Pelosi, and other members of the 
committee--Chairman Porter, Chairman Young--for the leadership 
that has been shown over the years. It is remarkable in many 
ways the amount of support that these programs have received, 
and the testament to that support is the fact that we are 
seeing, finally, a turn in the HIV epidemic that has resulted 
in last year's announcement by the CDC of a 47 percent decline 
in AIDS deaths. That is work to be proud of, and I salute the 
committee for all of the hard work that it has taken over the 
years to see that result. The fact is, however, that we still 
continue to see 40,000 new infections a year, which means that 
in a place like San Francisco, we continue to see an actual 
increase of the number of people with AIDS in needs of 
services.
    Fully, 58 percent--excuse me, fully, 800 of the 3,000 will 
be new clients to the foundation, which means that our 
resources will have to increase in order to serve those 
clients. We are about three-quarters percent privately funded, 
so that is a significant effort on our part to try to come up 
with those funds.
    Because the services for people with HIV and AIDS are 
comprehensive, I would like to highlight just a few of the key 
Federal programs that we would like to associate ourselves with 
a request for the committee. First of all, the foundation 
supports the national organizations responding to AIDS 
appropriation document which fully and comprehensibly describes 
the various Federal programs that are AIDS-related and makes 
appropriate requests for increases, but, specifically, we would 
like to request $625.2 million for title 1 of the Ryan White 
Comprehensive AIDS Resources Emergency CARE Program. We would 
like to request $134 million for the title 3 CARE Program. That 
is a program that provides early intervention medical services 
to community-based health clinics which I know are very 
important to you, Congressman Bonilla, and the title 1 program 
that I mentioned is also a program that funds the San Antonio 
area as well as 50 other areas in the country providing the 
lion's share of AIDS resources for those communities to provide 
services to people in need.
    The AIDS Drug Assistance Program, also part of the CARE 
Act, which is a program that has been very strongly supported 
by this committee; for that program, we request $544 million or 
an overall increase of $83 million over Fiscal Year 1999. We 
would also like to request that the initial work done last year 
to target resources to underserved communities of color be 
supported once again and to request that a minimum of $171 
million be targeted for that emergency effort. It was through 
this committee and former member Stokes and other members of 
the Congress that that money was provided to communities across 
the country, and we hope to see a dramatic result in the 
underserved populations becoming better served by these AIDS 
resources. We would like to request $848 million in total 
funding for the Centers for Disease Control HIV Prevention 
Projects. These are community-based projects primarily across 
the country that are attempting to reduce the HIV infections 
from that 40,000 number, annually, that I mentioned before. 
And, finally, we would like to request $255 million to the 
Center for Substance Abuse and Treatment, CSAT, which is housed 
at the Substance Abuse and Mental Health Services 
Administration and $225 million for the Centers for Substance 
Abuse Prevention, CSAP, at the same agency, SAMHSA.
    The programs, as you can see, are prevention, substance 
abuse treatment, and direct HIV service-related, because we 
know that they are all critically important if we are ever 
going to stem the tide of new infections and provide the 
appropriate care and treatment to people with HIV across the 
country. So, I would thank you for your time.
    Mr. Bonilla. Thank you for your time, Mr. Hopkins. We 
appreciate you being here.
    [The prepared statement of Ernest Hopkins follows:]

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                                           Tuesday, April 20, 1999.

                     NATIONAL INSTITUTES OF HEALTH


                                WITNESS

JOSEPH L. BRAND, CHAIRMAN, NATIONAL KIDNEY FOUNDATION
    Mr. Bonilla. Next, we have, on behalf of the National 
Kidney Foundation, Joseph L. Brand, who is senior partner at 
Patton Boggs and chairman of the Foundation. Welcome.
    Mr. Brand. Thank you, Mr. Chairman. My name is Joseph 
Brand. I am the chairman of the National Kidney Foundation, and 
I provide this testimony for the 30,000 members of our 
foundation. These include patients, their families, recipients 
of every kind of solid organ transplant, donor families, health 
care professionals, and members of the public at large who have 
banded together to improve access to and quality of care.
    We appreciate, Mr. Chairman, your support for our 
foundation for which we recognized you by presenting you with 
the O'Brien Award in our November, 1997 meeting in San Antonio. 
The foundation wishes to thank your committee for the 
bipartisan support which it made it possible to provide for a 
14.7 percent growth in funding for the National Institutes of 
Health in Fiscal Year 1999, including increases in excess of 12 
percent for NIDDK and NIAID.
    We hope that the committee will approve increases of 
similar magnitude for the upcoming fiscal year. We are also 
very appreciate of the major increase in funding for the organ 
transplant programs of the Health Resources and Services 
Administration and recommend that Congress continue to expand 
the resources available to HRSA for its efforts to increase 
organ donation in the United States.
    In 1997, 80,248 new patients developed irreversible kidney 
failure, or end-stage renal disease, ESRD, and 361,031 patients 
depended on either dialysis or a kidney transplant. However, 
that is only the tip of the iceberg. NIDDK estimates that are 
between 800,000 and 3 million Americans with chronic renal 
insufficiency who are potential victims of ESRD. There is 
increasing evidence that progression of renal disease can be 
slowed under circumstances. Unfortunately, these new findings 
are not necessarily reflected in patterns of care in the 
community. We recommend that the NIDDK initiate a process of 
developing consensus as to the interventions which could 
prevent or delay ESRD and the patients who benefit from such 
interventions. We expect that there will be an expansion over 
time in the areas in which it is possible to achieve consensus 
for a treatment recommendations as new evidence accrues from 
clinical research. Ultimately, this consensus should lead to 
programs which will translate science to practice and reduce 
the toll of ESRD.
    In September, 1998, NIDDK convened a workshop to explore 
factors which contribute to morbidity of dialysis patients, 
including malnutrition. Prior research has shown that there is 
an inverse relationship between indicators of dietary protein 
intake in dialysis patients and the frequency of their 
hospitalization. Also, the number of hospital days per year is 
greater is dialysis patients with low dietary protein intake. 
Future research should be directed to interventions which can 
improve the nutritional status of dialysis patients. The 
workshop identified several promising areas which could and 
should be supported by the Institute.
    During the 105th Congress, this committee grappled with the 
potential impact of a regulation which would have altered the 
system used to allocate organs for transplantation in this 
country. However, the primary situation which gives rise to 
organ allocation problems in the United States is the shortage 
of organs available for transplantation. In the brief 120 
minutes that your committee has assigned for this hearing, Mr. 
Chairman, one American will die for want of an organ donation. 
We urge the committee to focus its attention on program to 
increase organ donation, such as those which are undertaken by 
the Division of Transplantation of the Health Resources and 
Services Administration.
    The increased Fiscal Year 1999 appropriation for this 
division provided the resources for the agency to create a new 
grant program to support projects which will have a 
demonstrable impact on the supply of organs available for 
transplantation. Additional funding will enable the divisions 
to expand the scope of the program. While the number of 
cadaveric organ donors increased by 33 percent between 1988 and 
1996, the number of living donors grew by 95 percent during 
that same period. The National Kidney Foundation believes that 
we have only begun to cap the potential of living donation and 
is pleased that the Division of Transplantation plans to 
support initiatives to encourage living donation.
    This committee can also help to increase the supply of 
organs that are available for transplantation by supporting 
research leading to strategies to extend the period of time 
during which a transplanted organ continues to function. NIAID 
has taken the lead in research, and NIDDK has established a new 
Intermural Kidney Transplant Research Program. Both NIDDK and 
NIAID are supporting research which will make it possible to 
induce tolerance for a transplanted organ rather than suppress 
the body's natural tendency to reject it.
    Mr. Chairman, I hope that our testimony has demonstrated 
the potential research for preventing kidney disease and 
improving the lives of kidney patients. Thank you for this 
opportunity.
    Mr. Bonilla. Thank you, Mr. Brand, and I have been proud to 
be a strong supporter of the institutes that you are supporting 
here today, and I appreciate the recognition in working with 
the National Kidney Foundation over the years. Thank you.
    Mr. Brand. Thank you, Mr. Chairman.
    [The prepared statement of Joseph L. Brand follows:]

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                                           Tuesday, April 20, 1999.

                     NATIONAL INSTITUTES OF HEALTH


                                WITNESS

KENNETH VISTE, JR., M.D., IMMEDIATE PAST PRESIDENT, AMERICAN ACADEMY OF 
    NEUROLOGY, PAST CHAIR, AMA COUNCIL ON LEGISLATION, AND CHAIR, HCFA 
    PRACTICING PHYSICIAN ADVISORY COUNCIL
    Mr. Bonilla. Next, we have Dr. Kenneth Viste--I hope I am 
pronouncing it correctly.
    Dr. Viste. Yes.
    Mr. Bonilla. Immediate past president to the American 
Academy of Neurology and Chair of the legislative committee, 
representing the American Academy of Neurology and the American 
Neurological Association. Welcome.
    Dr. Viste. Thank you very much, Mr. Bonilla. Thank you for 
the opportunity to testify, and I am Ken Viste from Oshgosh, 
Wisconsin, the Past President of the American Academy of 
Neurology, Past Chair of the AMA Council Legislation, and 
current Chair of HCFA's Practicing Physician Advisory Council. 
I am testifying today on behalf of the American Academy of 
Neurology, an organization of 15,000 neurologists and 
neuroscientists; on behalf of the American Neurologic 
Association representing academic neurologists, and, most 
importantly, on behalf of patients with neurologic conditions.
    I will focus on NIH appropriations, on research, 
particularly NINDS, which affects multiple sclerosis, stroke, 
Alzheimer's, Parkinson's Disease, epilepsy, brain injury, and 
cerebral palsy.
    First, we would like to applaud the members of the 
subcommittee for the dramatic and much increase in the NIH 
budget for the current year and the special emphasis on NINDS 
research related to the brain. We recognize the many difficult 
choices the subcommittee faced last year and again faces this 
year with the budget resolution that makes your commitment to 
NIH all the more significant and all the more deserving of our 
gratitude. The increases in Fiscal Year 1999 will permit the 
NIH to expand research activity to all diseases tremendously. 
It should enable NIH to support more clinical research, which 
we strongly advocate, in order to bridge the very real gap 
between the expansion of knowledge on the one hand and the 
translation of this science to clinical applications on the 
other.
    Research, as you know, takes both time and effort. Basic 
science and clinical research are long-term propositions. For 
this reason, we and many other organizations, as you have heard 
earlier, recommend a five-year approach to the NIH budget with 
a goal of doubling over the next five years. We urge Congress 
to continue supporting this plan and the stability which it 
entails. This commitment will maintain the role of NIH as the 
world's respected leader in medical research and in pioneering 
advances in therapies.
    As a spokesperson for practicing neurologists, I can assure 
you that the health care for patients with neurologic 
conditions has dramatically improved in recent years. We have 
gone from a specialty of diagnosing to a specialty of being 
able to treat. Whether clot-busters in stroke patients, the 
newer therapies for Parkinson's Disease, the newer treatments 
for epilepsy, we have made great progress, particularly in the 
past five years. Research centers have been recently 
established to deal with the Parkinson's Disease and to develop 
effective, critical applications of basic research. In regards 
to multiple sclerosis, there is important work underway to 
define the viral triggers for the illness and to establish 
anti-viral agents for it. As you know, there is a multi-center 
program dealing with Alzheimer's Disease, looking at various 
prevention strategies, whether they be ibuprofen or vitamin E 
or other things that are much needed.
    We are making progress regarding the fundamental 
understanding of the causes of neurologic disorders. A 
continuation of the 1999 rate of increase over a five-year 
period will assist in expanding these developments. In two 
areas, Parkinson's Disease and Traumatic Brain Injury, 
legislation has been created charting a course for future 
developments in research. The Morris Udall Act and the TBI Act 
of 1996 need continued support. In regards to Traumatic Brain 
Injury, a consensus conference has just recently finished and 
has recommended a research agenda to determine the most 
effective ways to manage TBI, and this should be undertaken 
now.
    Additional clinical research is necessary, as I said 
earlier, to translate many of these findings into help for the 
patients of America. The MS Society and the academy both 
support future initiatives in multiple sclerosis research to 
explore the genetic susceptibility, to test immunotherapies and 
methods to regenerate lost myelin and nerve tissue. Epilepsy, 
which affects two and a half million of our citizens, needs 
more research in terms of intractable seizures in children, in 
expanding support for anti-epilepsy drugs, and some of the 
newer anti-epilepsy treatments of the brain--pacemakers, 
electrical stimulation, and such.
    In regards to the future, we would like to recommend a 
greater focus on clinical research. This could be achieved 
through language asserting a reasonable portion of any increase 
be applied to clinical research. This program would not be 
focused on a particular condition but would support centers 
that have the highest quality in their applications. The Decade 
of the Brain produced great basic science regarding disorders 
of the brain. The next decade must focus on improving and 
translating that knowledge into prevention strategies and new 
treatment and diagnostic modalities.
    Thank you for you attention.
    Mr. Bonilla. Thank you, Dr. Viste; appreciate you being 
here.
    Dr. Viste. Thank you.
    [The prepared statement of Dr. Kenneth Viste follows:]

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                                           Tuesday, April 20, 1999.

    NATIONAL INSTITUTES OF HEALTH, CENTERS FOR DISEASE CONTROL, AND 
                        DEPARTMENT OF EDUCATION


                                WITNESS

KRISTJAN RAGNARSSON, M.D., SENIOR VICE PRESIDENT, CLINICAL AFFAIRS AND 
    CHAIRMAN, DEPARTMENT OF REHABILITATION MEDICINE, MOUNT SINAI 
    MEDICAL CENTER, AND CHAIRMAN, LEGISLATIVE COMMITTEE, ASSOCIATION OF 
    ACADEMIC PHYSIATRISTS
    Mr. Bonilla. Next, we have Dr. Kristjan Ragnarsson who is 
the senior vice president of clinical affairs and chairman of 
the department of rehabilitation medicine at Mount Sinai 
Medical Center in New York and Chair of the legislative 
committee for the Association of Academic Psychiatrists, and 
you are here representing the American Academy of Physical 
Medicine and Rehabilitation and the Association of Academic 
Psychiatrists.
    Dr. Ragnarsson. Physiatrists is the name.
    Mr. Bonilla. Physiatrists, excuse me; sorry about that.
    Dr. Ragnarsson. Good afternoon. My testimony, today, will 
focus on research programs that affect people with physical 
disabilities, but, first, I want to thank the subcommittee for 
your leadership in providing funding for the NIH and CDC in the 
current fiscal year. I and my 6,000 colleagues are sorry to see 
that the President's budget does not provide for a similar 
increase in the year 2000.
    I want to tell you a little bit about myself. Despite those 
academic and administrative titles, I am first and foremost a 
physician who treats people with severe physical disabilities, 
but I have also been involved in research that aims to improve 
the care of my patients. My special interest has been spinal 
cord injury, and over the past 25 years, I have treated over, 
probably, thousands of people with spinal cord injury, and 
during that period of time, I have seen a lot of progress. We 
are now able to save and restore the lives of people with 
severe injuries and severe disabilities, whereas, in the past, 
they would have either died or they would have been housed in 
long-term institutions.
    I am going to tell you about a few of the patients that I 
have treated, because they are public record. Sang Lan, the so-
called Chinese gymnast who was injured in the Goodwill Games in 
Long Island last summer, broke her neck and became paralyzed; 
Dennis Byrd, the New York Jets football player who was injured 
in a football game in 1992 and also became paralyzed, although 
he recovered to an extent; Chuck Close, the painter who injured 
his spinal cord, damaged his spinal cord in 1988, and he just 
had a major exhibit, a solo exhibit here in Washington, and 
from time to time, I have consulted on Mr. Christopher Reeve, 
the actor.
    The improvements in medical that I have seen during this 
period of time have certainly come because of federally-
sponsored research programs. If it hadn't been for the Federal 
support, that research would not have gone on, and we wouldn't 
have seen this proctors that I have talked about.
    Last fall, I was chairman of the NIH Consensus Conference 
and Rehabilitation of People with Traumatic Brain Injury that 
was referred to earlier. This was the first such conference on 
TBI, but this is a condition that affects over two million 
people in this country, and two million is a conservative 
estimate. This conference was required by Congress in the 
Traumatic Brain Injury Act of 1996, and, as you may recall, 
Congressman Greenwood was an active sponsor of that 
legislation. We brought together the Nation's top researchers 
and clinicians all under one roof to try to determine what 
would be the best treatment for Traumatic Brain Injury and to 
determine the future course for research. We were, as a panel, 
convinced that there is much research to be done, and we 
believe that ultimately this research will help to improve the 
lives of people with Traumatic Brain Injury as well as the 
lives of their families.
    Well, I am here today, first and foremost, to urge you to 
provide for a similar budget increase for the NIH in the Fiscal 
Year 2000 as you did in Fiscal Year 1999, and, in particular, I 
would like to ask you to provide for a significant increase to 
the National Institute of Child Health and Human Development, 
the NICHD. As you probably know, the NICHD received the lowest 
rate of increase among all the NIH institutes for the Fiscal 
Year 1999, and, still, I think this institute is involved with 
pretty important stuff--infant mortality, child health, women's 
health, physical disability, including the diseases that I 
treat--spinal cord injury, Traumatic Brain Injury, stroke, and 
so on. And I know that this institute has sponsored very 
productive in all of these areas.
    All of the funding for basic and clinical rehabilitation 
research at NIH is through the National Center for Medical 
Rehabilitation Research which is in the NICHD. This center is 
among the youngest research centers at NIH. It was created by 
Congress, by the 1990 NIH amendment, and, Mr. Porter, who is 
the chairman of this committee, was a leading advocate for that 
time, and there were some other members of this committee who 
lended great support, and we are very grateful for that. It is 
a relatively new program and without a large funding base; it 
is approximately $25 million a year, and there is a great need 
for growth in the budget of this center in order to keep up 
with the many new developments so we can help people with 
profound physical disabilities.
    We urge the committee to provide sufficient funding for the 
NCMRR so it expand its efforts and take on a number of new 
initiatives that are being planned. We hope that your committee 
will endorse these initiatives in your bill and in your report.
    I just want to mention very briefly that the NICHD is 
establishing a regional medical rehabilitation research network 
in order to increase the research and medical rehabilitation 
and attract talented investigators into the field. They are 
also trying to follow up on the Traumatic Brain Injury 
Conference, all of the recommendations. What good is it to have 
a conference like that if you can do nothing with the 
recommendations; there is no money left. And then they want to 
look at pediatric trauma, all very worthwhile.
    I will finish my statement, and I want to put in one good 
word for the National Institute of Disability and 
Rehabilitation Research. The President's budget came through 
fine there--$90 million for Fiscal Year 2000--we support it. We 
do think CDC needs a further boost. Thank you very much.
    Mr. Bonilla. Thank you, Doctor. One of the privileges of 
being on this Subcommittee is to listen from accomplished 
researchers and physicians like yourself, and sometimes, I am 
sure some of us think when we sit here, boy, if we ever get 
hurt in the way you describe some of your patients have, I may 
be looking you up. So----
    Dr. Ragnarsson. I hope you never need to.
    Mr. Bonilla. I hope not either, but congratulations for all 
the good work you have done in your time practicing medicine. 
Thank you.
    Dr. Ragnarsson. Thank you very much.
    [The prepared statement of Dr. Kristjan Ragnarsson, M.D., 
follows:]

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                                           Tuesday, April 20, 1999.

                     NATIONAL INSTITUTES OF HEALTH


                                WITNESS

KARL C. PODRATZ, M.D., PH.D., IMMEDIATE PAST PRESIDENT, SOCIETY OF 
    GYNECOLOGICAL ONCOLOGISTS
    Mr. Bonilla. Next, we have Dr. Karl Podratz, immediate past 
president of the Society of Gynecologic Oncologists; welcome.
    Dr. Podratz. Thank you, Congressman Bonilla. I am Karl 
Podratz, a surgeon at the Mayo Clinic in Rochester, Minnesota 
and, as you indicated, the immediate past president of the 
Society of Gynecologic Oncologists, specialists devoted to 
delivering comprehensive cancer care to women with cancers of 
the female reproductive tract, predominantly, cancers of the 
cervix, endometrium, and ovary.
    I am grateful for the opportunity to provide testimony on 
behalf of the SGO in support of a 15 percent increased budget 
for the NIH, and particularly the NCI for continued progress to 
more effectively screen, prevent, and treat these cancers 
unique to women.
    Cancer of the cervix, which was the leading cause of cancer 
mortality in the United States before 1950 and continues to be 
the third most common cause of cancer-related deaths amongst 
women worldwide, has dramatically decreased in instance in the 
United States over the past five decades. These observations 
reflect the effectiveness of early screening programs using the 
Pap test which resulted from clinical trials conducted during 
the 1940's. Nevertheless, 12,800 new cases and 4,800 deaths 
from cervical cancer are anticipated during 1999.
    Because the etiopathogenesis of this disease involves the 
human papillomaviruses, viruses that are sexually transmitted, 
the development of vaccines to prevent this cancer appears 
theoretically plausible. To this end, the NCI, through 
collaborative efforts, is funding encouraging laboratory and 
clinical investigative studies. From the treatment standpoint, 
the recently announced successes of the NCI-funded Cooperative 
Group Trials which demonstrated and improved survival in women 
treated with chemotherapy in combination with radiation as 
compared to radiation alone, which heretofore was considered 
standard therapy, attests to the value of the NCI support. 
Hence, on behalf of women at risk for developing cervical 
cancer, a 15 percent increase in the Fiscal Year 2000 funding 
for the NCI will allow continued efforts to expand these 
important screening, prevention, and treatment trials. The 
successes of these trials will have both a national and a 
global impact.
    Cancer of the lining of the uterus is the most common 
malignancy of the female reproductive tract with an estimated 
37,400 new cases and 6,400 deaths anticipated this calendar 
year. The complexity of this cancer, at least in part, is 
attributable to there being different cancer types. One appears 
to declare itself early and is readily curable, as opposed to 
another, more virulent that presents as advanced disease and is 
more recalcitrant to treatment. The development of innovative 
methods of differential screening and pre-treatment assessment 
of tumor characteristics are needed to more optimally determine 
treatment algorithms. These objectives can only be met through 
a better understanding of the molecular abnormalities causing 
endometrial cancers and the evaluation of clinical treatment 
modalities. Therefore, continue funding for laboratory and 
clinical research by the NCI is of utmost importance to 
facilitate efforts to better screen, prevent, diagnose, and 
treat the most common of gynecologic malignancies.
    Ovarian cancer, which is the deadliest of the gynecologic 
cancers, will affect one in every 55 women and will result in 
an estimated 14,500 women dying from this disease this year. 
Early diagnosis is uncommon with nearly 80 percent presenting 
with advanced disease. Through a series of NCI-funded trials, 
spanning 15 years, the average survival rate has increased from 
12 months to 37 months. While this, indeed, is progress, the 
majority of these women eventually die of their disease, 
because the tumor has developed drug resistance. Therefore, an 
urgent need exists to decode the molecular causes of this 
disease which, in turn, will facilitate the development of 
specific screening, prevention, and treatment modalities.
    To that end, the National Cancer Institute, the Office of 
Women's Health, and the Society of Gynecologic Oncologists co-
sponsored strategic planning conferences on new directions in 
ovarian cancer research, and just recently a conference was 
scheduled for the strategic implementation of these new 
research directions. Included in the information packet 
provided to each of the members of this subcommittee are grids 
which outline the goals, the projects, and the implementation 
strategies. Payment for these projects would be a concrete and 
effective use of resources provided through a 15 percent 
increase in the funding for Fiscal Year 2000 for the NCI.
    I greatly appreciate the opportunity to share with you the 
need for resources to improve the screening, prevention, 
diagnosis, and treatment for tens of thousands of women who 
have and who will develop gynecologic malignancies. The SGO and 
I continue to look forward to working with you on behalf of 
women and their reproductive health. Thank you.
    Mr. Bonilla. Thank you very much, Doctor, for your 
testimony.
    [The prepared statement of Dr. Karl Podratz, M.D., 
follows:]

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                                           Tuesday, April 20, 1999.

              HEALTH RESOURCES AND SERVICES ADMINISTRATION


                                WITNESS

JUDITH E. N. ALBINO, PH.D., PRESIDENT, CALIFORNIA SCHOOL OF 
    PROFESSIONAL PSYCHOLOGY
    Mr. Bonilla. We now have Dr. Judith Albino, who is 
president of the California School of Professional Psychology. 
Welcome, Doctor.
    Ms. Albino. Thank you. As you noted, Mr. Chairman, I am 
president of the California School of Professional Psychology, 
known to most of our colleagues simply as CSPP. I appreciate 
the opportunity that you are allowing me today to provide 
testimony on the importance of telehealth in meeting the 
behavioral and mental health care needs of our Nation, and this 
testimony is, perhaps, a bit different from those you have 
heard from my distinguished predecessors at this microphone, 
because they have been focusing on specific diseases or health 
problems.
    And what I want to talk about today is the need for us to 
ensure that we deliver the excellent health care that is 
available to those in this country who would not otherwise have 
access. So, I am here specifically to urge you to support the 
Office for the Advancement of Telehealth within the Health 
Resources and Services Administration, and I do this because 
those programs, the programs of the HRSA Office for the 
Advancement of Telehealth, contribute to the twin goals of 
reaching underserved populations and helping to control the 
health care costs of our Nation.
    Mr. Chairman, my institution, CSPP, is headquartered in San 
Francisco and the district of your subcommittee colleague, 
Congresswoman Pelosi, and I want to mention before I go further 
how much we have appreciated the support of this subcommittee 
and Congresswoman Pelosi; how much we appreciate your 
leadership over the years in supporting the many health care 
issues that are so important to our country.
    CSPP is the oldest and the largest not-for-profit graduate 
institution of professional psychology in the country, and, in 
fact, we graduate more than half of the clinical psychologists 
who receive doctoral degrees each year in the State of 
California, and that figure is nearly 20 percent for our Nation 
as a whole. I believe that ours is also the only institution 
educating psychologists that has a primary mission of preparing 
psychologists to serve the underserved. CSPP has campuses in 
San Diego, in Los Angeles, in Fresno, and in the East Bay area, 
and each of those campuses sponsors a psychological services 
center where students and faculty provide services to the 
community. Our services are also placed in literally hundreds 
of other community settings, and, in fact, the students of the 
California School of Professional Psychology provide more than 
one million hours of free or very low cost care to members of 
their communities.
    According to the Public Health Service, there are still, 
today, 43 million Americans who lack reasonable access to 
primary health care, and still more lack access to specialized 
services, such as mental health care. As of last year, there 
were 630 mental health care professional shortage areas 
identified in this country. There are simply too few caregivers 
who are able to reach rural areas, isolated areas, and our 
urban inner-city areas as well.
    To help meet these shortages and these distribution 
problems and as part of our strategy for the next century, CSPP 
plans extensive growth in telehealth, educational, and clinical 
services. This direction is completely consistent with our core 
mission of reaching underserved populations. In California, the 
Department of Corrections and the State Department of 
Developmental Services are using telehealth, and these agencies 
want to do still more. CSPP has begun conversations with those 
agencies to explore the possibility of providing consultation 
and direct psychological care via telehealth as well as 
delivering custom-designed training programs for personnel who 
work in those agencies. Although we are spending record amounts 
on health care in this country, we must not forget those 43 
million citizens who do not have access to that care. 
Telehealth technologies offer the promise of delivering 
affordable care both when and where it is most needed.
    Mr. Chairman, as you know, the 2000 budget request from the 
administration for the Office for the Advancement of Telehealth 
is $13.1 million, the same level as the current year. The 
programs of that office will validate and demonstrate 
telehealth applications for use across the country and will pay 
dividends for many years to come. In addition, the resources 
available from the Office for the Advancement of Telehealth 
will help defray start-up costs for institutions such as mine 
and many more across the country, making it feasible for us to 
both teach and deliver through telehealth.
    So, in conclusion, I would urge you to consider an 
investment of $20 million in the Office for the Advancement of 
Telehealth for Fiscal Year 2000. Thank you for this 
opportunity.
    Mr. Bonilla. Thank you. Thank you very much, Dr. Albino.
    [The prepared statement of Dr. Judith Albino, Ph.D., 
follows:]

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                                           Tuesday, April 20, 1999.

                     NATIONAL INSTITUTES OF HEALTH


                               WITNESSES

SHARON L. MONSKY, CHAIRMAN AND CEO, BOARD OF DIRECTORS, SCLERODERMA 
    RESEARCH FOUNDATION
MICHELLE RUTH JACOBS, SCLERODERMA RESEARCH FOUNDATION
    Mr. Bonilla. Next, we have--filling in for Sharon Monsky, 
we have Michelle Ruth Jacobs. My understanding is Sharon is ill 
and cannot be here today, so Michelle will be speaking on 
behalf of Sharon who is chairman and CEO of the Scleroderma--I 
am sorry, I have trouble with that word--Research Foundation. 
Thank you.
    Ms. Jacobs. Mr. Chairman and members of the committee, 
thank you for the opportunity to present testimony before you 
today and for all you have done in the past to support the 
National Institutes of Health. My name is Michelle Jacobs, and 
I am here for two reasons: one is because Sharon Monsky, Chair 
of the board of directors for the Scleroderma Research 
Foundation is too ill to travel as a result of the scleroderma 
and has asked me to speak on her behalf; secondly, I also have 
scleroderma; therefore, I have a vested interest in finding a 
cure for this awful disease.
    Mr. Chairman, the Scleroderma Research Foundation is in the 
business of finding a cure for a disease which affects over 
500,000 Americans; 80 percent of who are women in the prime of 
their lives; women like your sisters, your wives, and your 
daughters. More people suffer from this disease than suffer 
from muscular dystrophy, multiple sclerosis, and cystic 
fibrosis. The truth is that it is at least disabling, more 
ugly, disfiguring, and even more deadly than any of these 
diseases.
    Unfortunately, most people have never heard of scleroderma, 
and I would like to tell you a little bit about this disease. 
Scleroderma literally means hard skin, however, it is not just 
a disease of the skin. It is a chronic degenerative disease 
that leads to the overproduction of collagen in the body's 
tissue. For half of the people affected, at best, their skin 
loses its elasticity and becomes increasingly painful and 
unsightly. At worst, normal functions, like picking up a fork 
to eat, become impossible. For the other half, the worst case 
prognosis is that their internal organs will slowly and 
painfully turn to stone, causing death. The Scleroderma 
Research Foundation is the only organization in the country 
dedicated exclusively to finding a cure for scleroderma. Our 
approach is collaborative and cross-institutional with 
immediate sharing of all results and information. This approach 
and our successes have led Dr. Regis Kelly, chairman of the 
Department of Biochemistry and Biophysics at the University of 
California-San Francisco to state, ``Every $100,000 invested in 
this kind of research can produce $1 million in results 
compared to the usual methods, and, in all my years of medical 
research, I have never seen a more concentrated effort at 
solving a problem and one in which so much progress has been 
made so fast, and that includes all the money and people 
working on HIV.''
    The Scleroderma Research Foundation has successfully met 
the challenge of raising private funds, bringing together the 
top scientists and targeting the most direct approach to 
finding a cure for chronic illness. The foundation has two very 
successful and productive scleroderma research centers. Through 
our collaborative approach to research, we have leveraged four 
million privately raised dollars into some of the most exciting 
research ever in the field. It is worth an exploratory 
investment from Congress to see if this model can really 
fulfill the prediction of Dr. Bruce Alberts, president of the 
National Academy of Sciences, who believes that our approach, 
``will serve as a model for future medical and scientific 
research because of its unprecedented unified plan of attack,'' 
which will eventually change the way every disease is 
researched.
    As a taxpayer and a woman who suffers daily from this 
disease, it simply makes good sense to me to invest research 
dollars in the Scleroderma Research Foundation. Mr. Chairman 
and members of the committee, I am here today to ask Congress 
to recommend that the NIH become a partner in cure advocacy. We 
are requesting that Congress fund $4 million for this method of 
research through the National Institute of Arthritis and 
Musculoskeletal and Skin Diseases or another appropriate NIH 
institute specifically for the research in finding a cure for 
scleroderma. There are many excellent opportunities for 
progress that are being missed in the current environment, and 
we believe that NIAMS simply needs the wherewithal to act and 
make a relatively small investment compared to total research 
allocation. If I am not mistaken, I believe the total NIH 
budget approaches something in the neighborhood of $15 billion.
    In order to continue to succeed, we desperately need the 
Federal Government to become a full partner in our investment 
for a cure. By matching our investment for a cure, becoming our 
partner, and adequately funding NIAMS, Congress can leverage 
the most results from its research appropriations and provide 
hope to hundreds of thousands of people who struggle daily with 
this terrible disease. Thank you.
    Mr. Bonilla. Thank you, Ms. Jacobs, and please give Mr. 
Monsky our best.
    Ms. Jacobs. I will; thank you.
    [The prepared statement of Sharon Monsky follows:]

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                                           Tuesday, April 20, 1999.

                     NATIONAL INSTITUTES OF HEALTH


                                WITNESS

JOSEPH GIAMMALVO, A PRINCIPAL WITH REAL PROPERTY ADVISORY SERVICES, 
    INC.
    Mr. Bonilla. Next, we have Joseph Giammalvo, who is here 
with his son today, Michael, a Cooley's anemia patient on 
behalf of the Cooley's Anemia Foundation.
    Mr. Giammalvo. Good afternoon, Mr. Bonilla and members of 
the committee. I want to thank you for the opportunity to speak 
before you again this year on behalf of the Cooley's Anemia 
Foundation. With me again is my son Michael who is 7 years old 
and is a Cooley's anemia patient.
    Mr. Bonilla, briefly, to refresh your memory, Cooley's 
anemia, or thalassemia, is a genetic blood disease that results 
in inadequate production of hemoglobin, the oxygen carrying red 
blood cells. The result is a severe anemia that requires 30 to 
35 blood transfusions per year for patients. These transfusions 
result in the buildup of iron in vital organs particularly the 
liver and the heart and which can only be removed by the use of 
a drug known as an iron chelator. That requires a 10 to 12-hour 
infusion every day. That is a difficult and painful process for 
the parents and the children when patients are young. As they 
get older, however, compliance becomes an even greater problem. 
Teenagers are not anxious to spend half of every day strapped 
into a pump with medicines being pushed into their bodies when 
they could be going to the mall with their friends or at the 
movies.
    Last year, Mr. Bonilla--excuse me--I told you that we felt 
strongly and, more importantly, several NIH special emphasis 
panels felt strongly that a clinical network needed to be 
created to advance research into this disease. I also said we 
were concerned that NIH was not acting on this recommendation. 
Today, I am thrilled to tell you that NHLBI has issued an RFA 
to create the Thalassemia Clinical Research Network that we 
have sought for so long. We are very grateful to Dr. Claude 
Lenfant for his leadership in the creation of this network. He 
has gone to great lengths, including flying to Boston for a 
meeting with our medical advisory board to assure that every 
``i'' is dotted and every ``t'' is crossed. I would also like 
to recognize your colleague, Congresswoman Rosa DeLauro of 
Connecticut who has stood with us from the day she became a 
member of the subcommittee. I am confident in saying that we 
would not have reached this point without her support.
    This network is an infrastructure that will house some 
important research, and better and easier ways to remove iron 
from the system need to be studied as do better and safer ways 
of measuring the buildup of iron and vital organs particularly 
the heart. I am pleased to inform the committee that NIDDK, 
working with NHLBI, has issued an RFA this year directed at 
funding basic and clinical research on these very issues.
    The longer lifespans of our patients create its own set of 
issues that are ripe for study. These range from stunted and 
delayed growth, delayed sexual development and infertility, 
hormone replacement therapy and pregnancy, and the onset of 
osteoporosis and diabetes, and the psycho-social impact of 
living with this disease. Some of the most promising research 
will take place with regard to fetal hemoglobin enhancing 
drugs. Michael takes one of these, and it works quite 
effectively for him, but for the other Cooley's anemia 
patients, it does not work at all. We need to learn why and 
what can be done to make it work.
    Finally, looking out a little further on the horizon, Mr. 
Bonilla, gene therapy may hold the ultimate promise. As the 
Human Genome Project races toward completion, we believe that 
opportunities will present themselves to fix the gene that 
causes this disease.
    The Cooley's Anemia Foundation strongly supports your 
dedication efforts to double the funding of NIH over a five-
year period. We know the difficulty involved with doing that 
given the competing pressures you feel. However, as you look at 
my son, Michael, you see a normal little boy with a challenge 
in front of him; that challenge is Cooley's anemia. The 
creation of the Thalassemia Clinical Research Network to begin 
to meet that challenge. As far as we have come in the last 20 
years cannot begin to compare to what we will do together in 
the next five years.
    Thank you for your support and for the opportunity to 
address the committee.
    Mr. Bonilla. Thank you, Mr. Giammalvo for your excellent 
testimony. I know you are very proud of your son; he is a good-
looking boy, and it is hard to--you can't even tell that he is 
suffering from the Cooley's anemia, but, Michael, you should be 
very proud of your dad.
    Mr. Giammalvo. Thank you.
    Mr. Bonilla. Thank you very much. Is he in first grade?
    Mr. Giammalvo. Second.
    Mr. Bonilla. Second grade.
    [The prepared statement of Joseph Giammalvo follows:]

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                                           Tuesday, April 20, 1999.

                        DEPARTMENT OF EDUCATION


                                WITNESS

ANDREA SHELDON, EXECUTIVE DIRECTOR, TRADITIONAL VALUES COALITION
    Mr. Bonilla. Next, we have Andrea Sheldon, the executive 
director of the Traditional Values Coalition. Andrea, welcome.
    Mr. Istook. Mr. Chairman?
    Mr. Bonilla. Mr. Istook, yes?
    Mr. Istook. While she is settling, I just wanted to, if I 
might, extend a special welcome to Ms. Sheldon. I have had the 
privilege of working with her on a number of issues, and I very 
much appreciate the effort that she and her organization makes 
to dig in. We believe that Government should be used to serve 
society, and I know her testimony is about efforts to use the 
resources of Government taxpayers trying to remake society 
according to what may be in the popular vogue for the moment 
rather than in keeping with the long established and held 
beliefs of our country. So, I just wanted to add those words of 
welcome to Ms. Sheldon. I appreciate the efforts that she 
makes.
    Mr. Bonilla. Thank you, Mr. Istook.
    Ms. Sheldon. Thank you, Mr. Istook, Mr. Bonilla, and 
members of the committee. I am Andrea Sheldon, executive 
director of the Traditional Values Coalition, and I appreciate 
the opportunity to testify before you today on behalf of our 
40,000-member churches. I am here today to express our grave 
concern over how the Clinton Administration, under the guise of 
violence prevention or hate crimes, is using Federal dollars to 
promote the false notion that Christians are perpetrators of 
hate. The promotion of anti-Christian bigotry is pervasive 
throughout the administration's programs. The funds to 
accomplish this goal are often transferred from one agency to 
another.
    Since time does not permit a complete overview, I will only 
highlight a few examples of our concerns. The National Center 
for Injury Prevention and Control, under the Centers for 
Disease Control, is promoting a youth suicide study which was 
repudiated by former Secretary of HHS, Dr. Lewis Sullivan, 
because it was never subjected to peer review. In addition, it 
blames Protestant and Catholic churches for causing the suicide 
of teens and suggests that these churches alter their doctrine 
on homosexuality. Now, in Fiscal Year 2000, NCIPC anticipates 
$1 million to $2 million to conduct research on suicidal 
behavior and sexual orientation. We ask that no money be given 
that would include this undocumented and bigoted research.
    An initiative which was recently announced by the 
administration will provide $300 million in grants to be 
awarded to ensure safer learning environments. This will be a 
joint venture between a number of agencies. This joint agency 
effort lists one of its goals to, ``reshape attitudes and 
beliefs.'' Which attitudes and beliefs are they talking about? 
It is not the role of Government to change people's beliefs or 
to determine which religion is good or bad.
    Then there are efforts specifically targeted at the 
thoughts and beliefs of children and their parents. President 
Clinton stated in a federally-funded curriculum, ``Prejudice 
and contempt cloaked in the pretense of religious or political 
conviction are no different.'' This statement came from the 
Departments of Education and Justice's curriculum, entitled, 
``Healing the Hate,'' which is for children as young as fifth 
grade. The President's point is clear to Christians: if your 
religious beliefs teach that homosexuality is a sin, then you 
and your religion are bigoted, intolerant, and prejudiced. In 
this curriculum, under this section, perpetrators of hate, 
young readers find anecdotes which use terms like Baptist and 
Pentecostal to describe the origins of violent Neo-Nazi and 
KKK-like extremists. Nowhere does it state that Christians 
believe that racism is immoral or wrong. Instead, it leads 
students to believe that their classmates who are in the named 
church denominations will, as the curriculum says, annihilate 
the forces of Lucifer and the anti-Christ, blacks, and other 
people of color and Jews.
    Traditional Values Coalition member churches include 
Baptists and Pentecostals. It is outrageous that the Federal 
Government would endorse the prejudicial and intolerant 
stereotyping of religion as a cause of hate crimes, and I 
canassure you that none of our members' doctrines teach that white 
people are going to annihilate anyone.
    ``Healing the Hate'' is the core curriculum used in youth 
violence prevention or hate crimes programs funded by the 
Federal Government. A recent contract of nearly $14 million for 
a ``Preventing Hate Crime: A Comprehensive Approach'' is to 
train juvenile justice professionals, educators, legislators, 
and many others. It even pays hotel rooms and meals for 
attendees; that is interesting. I want to make clear that the 
actual cost of this publication is an elusive mystery. The 
funding stream for these anti-Christian for homosexual programs 
and initiatives is like an octopus with many tentacles.
    A similar multi-agency publication preventing youth hate 
crime, a manual for schools and communities, distributed by the 
Departments of Education and Justice, offers as resources the 
Washington State Safe Schools Coalition and a Janet Reno 
Website. The Washington State curriculum is for children as 
young as kindergarten and teaches about gay, lesbian, bisexual, 
as well as the term transsexual, including discussions about 
how transsexuals have sex change operations. Yes, as young as 
kindergarten will hear that discussed.
    In addition, the curriculum teaches that there aren't any 
girl colors or boy colors or girl names or boy names. It 
maintains that those are stereotypes of what you have to be 
like to be a boy or a girl. So, gentlemen, you probably should 
take off your blue shirts and put on pink ones.
    A Department of Justice and Education Website, which 
undermines the parent-child relationship, instructs children to 
talk with teachers and other school officials if they encounter 
hateful acts in the home. This Website is also for children 
starting in kindergarten.
    This anti-Christian philosophy can be found also with 
grantees. Employees of the Sexual Minority Youth Program in San 
Francisco receive a portion of their salaries from CDC and 
Education. These dollars are used to instruct, again, on the 
homosexual issue, and they do that so they can get around 
parents' opting their children out.
    In closing, we just want to say our--make a point that 
schools are--are schools now saved to the extent that 
education--that the Department of Education can start tinkering 
with students' beliefs? Was it the intent of Congress and the 
American people that money should be appropriated for such 
programs? I don't think so. We believe that more attention 
should be paid to restricting violence in schools and that no 
child should be hurt, whether they are struggling with the 
sexual orientation or whether they are fat or skinny or nerdy.
    And, also, just as far as this funding goes, we feel that--
I know that you don't do oversight, but we would like to ask 
you to consider requiring some new controls to monitor how the 
Departments I have mentioned spend money. And we would like to 
see a place where we can monitor this money; there is no way of 
monitoring it, and we think that that would be very important 
also. I appreciate your time and your listening to the concerns 
of our 40,000-member churches. Thank you.
    Mr. Bonilla. Thank you very much, Ms. Sheldon.
    [The prepared statement of Andrea Sheldon follows:]

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                                           Tuesday, April 20, 1999.

                     NATIONAL INSTITUTES OF HEALTH


                                WITNESS

STEVE TORNETTA, DEVELOPER, GENERAL COUNSEL, LFT REALTY GROUP AND 
    PROSTATITIS PATIENT
    Mr. Bonilla. We now have Steve Tornetta, who is a developer 
and general counsel for LFT Realty Group and a prostatitis 
patient who is representing the Prostatitis Foundation. Mr. 
Tornetta, welcome.
    Mr. Tornetta. Thank you. Good afternoon, Congressman 
Bonilla and the other members of the committee. My name is 
Steve Tornetta, and I am a lifelong resident of Pennsylvania. I 
thank you for the opportunity to speak this afternoon, and I 
hope to raise additional awareness about this disease. I am 
here on behalf of the Prostatitis Foundation, which is a non-
profit group dedicated to promoting awareness and research of 
prostatitis.
    There exists, today, in America a disease that can often 
rob a man of his job, sleep, sexual function, and, ultimately, 
peace of mind and sense of purpose, sometimes with tragic 
results. Prostatitis in its various forms is currently the most 
common neurologic diagnosis in men younger than 50 and the 
third most common in men ages 50 and older. It accounted for 
two million physician office visits in 1996 and has a statewide 
incidence of between 5 and 8 percent. However despite the 
prevalence of this disease and the severe impact it has on both 
the economy and those afflicted, it receives very little 
attention from the medical community, and press, and our 
Government.
    There are several reasons for this apathy. First, the 
disease is not fatal. As you may know, the prostate is a 
walnut-sized gland that surrounds the urethra much like a 
doughnut and is part of the male urinary tract. Its role is in 
the reproductive process. Thus, an inflammation of the prostate 
gland may cause many symptoms, as you will hear, but unless it 
completely closes the urethra, and thereby prevents urination, 
it does not kill.
    Second, because it is involved in the male reproductive 
tract, many men feel embarrassed to discuss their condition, 
often avoiding a doctor visit until the disease has progressed 
to a severe condition. Even when these men see a doctor, they 
are reluctant to engage in follow-up visits because of the 
intrusive nature of diagnosing and treating the disease. They 
do not discuss their condition with outsiders, and thereby 
raise awareness.
    Another reason prostatitis has received such little 
attention is the disinterest of the medical community. Our 
medical system, like the rest of the economy, is market-driven. 
Thus, most urologists and other medical practitioners focus 
their only asset, their time, on those conditions which provide 
the highest pecuniary reward. They are not to be faulted for 
this; it is merely a fact of life. As a result, most urologists 
choose to focus their time and resources on the more serious 
and ultimately more profitable urologic maladies of prostate 
cancer and BPH. Both of these conditions often require surgery 
or other expensive procedures. Surgery and most other urologic 
procedures are almost never indicated for prostatitis.
    An illustration of this disinterest by the urologic 
community can be made from the most recent Johns Hopkins White 
Papers, entitled, ``Prostate Disorders.'' While the good 
doctors go into great detail in layman's terms about prostate 
cancer and BPH, there is no mention of prostatitis. How can 
this be? Prostatitis is the unwanted stepchild of the urologic 
community. Unwanted because it does not warrant expensive 
procedures; can be time-consuming to treat, and the patients, 
themselves, are often desperate for help.
    Prostatitis patients can, indeed, be desperate men. Imagine 
a life where you must awake three or more times at night to 
urinate; cannot perform sexually, and cannot sit because of 
excruciating pain in the perineum. Because of inflammation in a 
part of the body where there is very high density of nerves and 
where most of the body weight rests when sitting, life can 
become Hell. All that is important to a man is robbed, leaving 
him tired, unemployed, and often lonely, shuffling through life 
unable to find help or a cure.
    Some forms of prostatitis can be treated through 
conventional florclinalone and other antibiotic therapy where 
the inflammation is caused by bacterial infection. However, 
bacterial infection is only one cause of prostatitis. There is 
an as yet unidentified cause of inflammation of the prostate in 
most men with the disease, while Congress last year authorized 
the allocation of money for a pilot study to better determine 
the cause of this inflammatory response. While this is an 
excellent start, much more must be done.
    Our Congress can better serve the public through the 
allocation of additional funds to both expand this study as 
well as promote more research. This study currently consists of 
several urologic clinics in different parts of the country. 
Volunteers for the study quickly filled all available slots, 
sometimes within days of the opening of the local study. 
Additional sites or openings for additional patients would be 
warranted. Furthermore, our Congress could authorize additional 
funding to promote research for more effective drugs that 
penetrate the prostate, which resists the introduction of many 
chemicals that are foreign to the body. Also, more research can 
be conducted on therapies that do not involve drugs.
    On behalf of the Prostatitis Foundation and the many men 
suffering from prostatitis, I thank you for your time and 
attention to our plea for help.
    Mr. Bonilla. Thank you, Mr. Tornetta, for your testimony.
    [The prepared statement of Steve Tornetta follows:]

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                                           Tuesday, April 20, 1999.

                     NATIONAL INSTITUTES OF HEALTH


                                WITNESS

GILBERT S. OMENN, M.D., PH.D., EXECUTIVE VICE PRESIDENT FOR MEDICAL 
    AFFAIRS, UNIVERSITY OF MICHIGAN AND CEO, THE UNIVERSITY OF MICHIGAN 
    HEALTH SYSTEM
    Mr. Bonilla. We now have Mr. Gilbert Omenn, who is 
executive vice president for medical affairs, University of 
Michigan and CEO at the University of Michigan Health System, 
representing the University of Michigan. Doctor, welcome.
    Dr. Omenn. Thank you very much, Mr. Bonilla. I am also here 
today representing a large coalition of academic medical 
centers with some suggestions for maximizing the productivity 
and impact of the very remarkable and splendid investment in 
the NIH research programs. By the way, I was also an associate 
director of OSTP and OMB some years ago.
    We want to thank you, like everyone else, for the 
investment in biomedical research. Last year's $2 billion 
increase is a splendid launch on the bipartisan goal of 
doubling the NIH budget. My perspective is that we spend over 
$1 trillion per year now on medical care. One can estimate that 
20 to 30 percent of that, $250 million, roughly, is our best 
effort to help patients sort of chasing the symptoms of 
diseases whose underlying causes we do not yet understand.
    So the imperative for research and research investment is 
well understood by this committee and very warmly supported by 
the American public, as you have heard from Research America 
and many other.
    We are here today to seek your help in further 
strengthening the extraordinary partnership between academia 
and the Federal Government, which was initiated many years ago 
and has spawned remarkable scientific advances. Academia, 
industry, and government now are positioned to exploit a golden 
era of biology. And academic institutions are major players.
    We recommend three specific actions. First, to increase the 
funding for facilities, construction, renovation, instruments, 
equipment. The exciting developments in genomics, chemical 
biology, neuro-sciences, cancer, and many, many other fields 
require new kind of equipment and facilities. Even the best 
minds cannot compensate for outdated equipment and facilities.
    It is vitally important that we have facilities and 
equipment to fully exploit the research opportunities and 
utilize well the increased project grant funding.
    National Science Foundation, AAMC, other organizations have 
documented very, very large needs in this area in which the 
private sector should participate together with government in 
meeting these needs.
    So we recommend that you consider appropriating $250 
million within the NIH appropriation for extramural facilities 
construction to be awarded on a competitive basis requiring 
institutional match to leverage the NIH funds.
    Second, we would like you to consider raising the salary 
cap on extramural scientists supported by NIH. The NIH and the 
academic community share a major concern about recruiting and 
retaining excellent investigators, especially clinician 
investigators in biomedical and behavioral research. These 
physicians typically have considerable accumulated debt from 
the medical and post-graduate training, and they have an 
opportunity cost in choosing research careers over clinical 
practice or industry jobs.
    Medical schools increasingly expect them to earn their way 
through clinical service, and, of course, earn their support 
for the research time by competing for Federal grants. As they 
move up the ranks and develop successful careers, they or their 
academic departments are penalized by a salary-rate cap imposed 
in 1991. Unfortunately, I think perhaps unintentionally, 
Congress omitted a salary adjustment to account for inflation.
    Thus the maximum salary rate on a 100 percent basis 
prorated for the proportion of time actually spent in the 
funded research was $125,000 from 1991 through all the way to 
this year. In the current budget, Congress did adopt a 
principle increasing the cap by nudging it upward to $125,900.
    The NIH itself, for the intramural scientists, has created 
senior biomedical research service that pays up to $151,000 
max. This amount is roughly equal to what the salary cap on 
extramural academic researchers would be had it been indexed 
for inflation these several years.
    So we recommend that you support raising the current salary 
maximum paid to extramural academic researchers on an equity 
basis to match with the intramural scientists, putting it at 
the same maximum level as under the senior biomedical research 
service. This could be phased in over two years, if necessary, 
to smooth the funding.
    Number three, and we recommend that you consider re-
instituting a flexible institution research fund which we feel 
would greatly enhance the efficiency and cost-effectiveness 
impact of research at the institutional level and, therefore, 
at the national level.
    During the past decade, financial pressures on the clinical 
enterprise of academic medical centers has intensified, 
particularly since the balanced-budget act of 1997. It is 
increasingly difficult to generate institutional margins to 
underwrite research needs that are not adequately covered in 
the project grant mechanism.
    We want to enhance the impact of project NIH funding by 
being flexible enough to change with the science, accommodate 
the change in national priorities, and make the most of the NIH 
and institutional investments. So we propose that you consider 
grants in the range of $25,000 to $300,000 in various criteria 
through the NIH Office of Research Resources. The total budget 
for this would be on the order of $60 million out of the $16 
billion.
    We are confident Congress and the NIH can enhance the 
impact of project-based investments by taking these three 
additional steps.
    Thank you very much, Mr. Chairman.
    Mr. Bonilla. Thank you very much, Doctor, for your 
testimony. Appreciate you being here.
    [The prepared statement of Gilbert Omenn follows:]

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                                           Tuesday, April 20, 1999.

                       NEUROFIBROMATOSIS RESEARCH


                                WITNESS

KATHY PRICE, EXECUTIVE DIRECTOR, TEXAS NEUROFIBROMATOSIS FOUNDATION
    Mr. Bonilla. I'm happy now to welcome Kathy Price, the 
executive director of the Texas NF Foundation. She has done 
such a remarkable job with the foundation in Texas that 
individuals from around the country call on her when 
establishing NF organizations in their States.
    Texas is home to some of the most exciting NF research. I'm 
sure Kathy will be sharing some of the results with us here 
today, and I also want to say I notice that my pal Red McCombs 
from San Antonio is on your honorary board of directors.
    Ms. Price. Yes, he is.
    Mr. Bonilla. So next time you see him, tell him I said 
hello.
    Ms. Price. I will do that. Thank you very much.
    Mr. Bonilla. Thank you.
    Ms. Price. It is a privilege to be here today, Congressman 
Bonilla. And I am grateful for the opportunity to present 
testimony on the need for continued Federal investment at the 
National Institutes of Health and also the continued commitment 
to research on neurofibromatosis. My name again is Kathy Price, 
the executive director of the Texas Neurofibromatosis 
Foundation. And I, myself, have neurofibromatosis.
    But the real reason I am here, I am here on behalf of 
100,000 Americans with neurofibromatosis as well as the tens of 
millions who suffer from NF-related diseases. The Texas 
Neurofibromatosis Foundation was established in 1981, and we 
are there and we are committed to meeting the needs of the 
5,000 Texans and their families who struggle with NF every 
single day.
    Neurofibromatosis, and I will refer to it as NF from here 
on out to save time, is commonly but incorrectly known as 
elephant man's disease. It involves the uncontrolled growth of 
tumors along the peripheral nerve paths which can result in 
terrible disfigurement, deformity, blindness, deafness, brain 
tumor, cancer, and even death. It is the most common 
neurological disease caused by a single gene.
    Now while not all NF patients will suffer the most severe 
symptoms, we all live our lives not knowing when or where the 
next tumor will form. NF is a very highly variable disease, and 
it is also a progressive disease. Approximately one in every 
35,000 babies is born with NF. This makes it more common than 
muscular dystrophy or cystic fibrosis.
    Fifty percent of the time the disease is inherited from a 
parent, and the other 50 percent of the time there is no family 
history. It is the result of spontaneous mutation.
    With a small Federal investment, NF can become one of the 
great success stories of molecular genetics. One leading NF 
researcher stated that more is known about NF genetically than 
any other disease. The enormous promise of NF research and its 
potential to benefit tens of millions of Americans in this 
generation alone has gained recognition both from the Congress 
and NIH.
    This is evidenced by the fact that there are now five 
institutes at NIH conducting NF research. They include NCI, 
NINDS, NIDCD, NICHD, NHLBI. And we are just getting started. 
Since the discovery of the gene in 1990, just nine short years 
ago, researchers have connected NF to some of the following 
diseases and disorders.
    Cancer. Studies show that a protein produced by our bodies 
called ras--the ras activity can be inhibited by the NF 
protein, neurofibromin. Ras is connected to tumor growth and is 
involved in over 30 percent of all cancers. The inhibition of 
ras by neurofibromin may result in finding not only a treatment 
and a cure for NF, but many other forms of tumor-forming 
diseases such as cancer.
    Learning disabilities. Learning disabilities are among the 
most common neurological complication of children with NF, 
occurring in 30 to 65 percent of children. Another function of 
this ras protein is to facilitate the cell-to-cell 
communication within the brain. And recent research on mice, 
who have the same mutation that causes NF in humans, has shown 
that treating the mice with the drug that decreases ras 
function actually cures their learning disability.
    This can have an amazing impact on the amount of money that 
we spend on education and learning disabilities if we can 
actually cure it.
    NF type II accounts for about five percent of all genetic 
forms of deafness. And right now some current gene therapy and 
drug therapy shows that NF II-related deafness can be prevented 
or cured if they catch the tumor early enough that it hasn't 
done too much damage to the acoustic nerve.
    And this is a really big one. Most recently, and brand new 
research has uncovered a connection between NF and heart 
disease. Researchers have shown that mice completely lacking in 
NF I have a congenital heart disease and it involves the 
endocardial cushions that form the heart valves. And 
researchers believe that further understanding how an NF 
deficiency leads to heart disease may be the key to unlocking 
the mysteries of heart disease.
    Our goal is to translate the promise of scientific 
discovery into an improved quality of life for all Americans. 
To accomplish this goal, we must as a nation continue to invest 
in medical research at NIH. I strongly encourage you to support 
the recommendation of the ad hoc group for medical research 
funding, which calls for Fiscal Year 2000 appropriation of $18 
billion for NIH.
    And, in conclusion, I want to thank this committee for 
recognizing the importance and the promise of NF research in 
the past by including language in your Fiscal Year 1999 report 
encouraging both the NCI and NINDS to increase their NF 
research portfolios, which they have. They have almost doubled 
their funding since 1995.
    So we would like to please encourage you to continue that 
as well as to encourage NICHD, NICDC, NHLBI, and NIDRR at the 
Department of Education to continue this trend.
    Thank you very much. We really appreciate your time.
    Mr. Bonilla. Thank you, Kathy, for all the good work you do 
and for your fine testimony. And I think you can still catch 
your plane if you are packed and ready to go.
    Ms. Price. I think so. Thank you very much.
    Mr. Bonilla. Good luck to you.
    Ms. Price. Thank you.
    [The prepared statement of Kathy Price follows:]

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                                           Tuesday, April 20, 1999.

                                SYPHILIS


                                WITNESS

CHARLIE RABINS, CHAIR, NATIONAL COALITION OF STD DIRECTORS
    Mr. Bonilla. Next we have Charlie Rabins, who is the Chair 
of the National Coalition of STD Directors. Welcome.
    Mr. Rabins. Thank you. Good afternoon, Congressman Bonilla 
and staff members of the subcommittee. I am Charlie Rabins, 
chair of the National Coalition of Sexually Transmitted Disease 
Directors. I thank you for this opportunity to discuss the 
issues and priorities surround STD at the national level but 
also thank you for the past support of this committee during 
the past several years for STD prevention efforts.
    One of the challenges that we in the STD community face 
when asking for resources and one that I face as I speak to you 
today is that the term STD is almost a misnomer. When we speak 
about sexually-transmitted diseases, we speak about not just 
one disease but many, each with its own clinical course and its 
own treatment and its own consequences.
    We who deal with this $8 billion public health problem are 
fighting a war on numerous fronts. Unfortunately, because 
inadequate resources, we must choose our battles. Being forced 
to prioritize among diseases, is the single most frustrating 
aspect of our work because we know what to do about nearly all 
of them.
    So today I will begin by talking about one such priority. 
Syphilis and its elimination in the United States. I focus on 
syphilis because among the array of unique sexually-transmitted 
diseases, syphilis is singular for the following reason: With 
the exception of a few isolated pockets, it is now virtually 
non-existent in most areas of the country. And we stand poised 
on the brink of eliminating this scourge.
    It may seem strange that I concentrate on a disease that 
appears to be a public health success story. It is not a 
success story; rather, it is one of the most glaring failures 
in the history of the American public health system and 
highlights the gaps in our capacity to control infectious 
diseases.
    This is not the first time we have been at the brink of 
syphilis elimination. Since the introduction of penicillin, the 
organization of the National STD Association in the 1940's, we 
have stood on the brink not once but several times. Everyone of 
these near-elimination moments has been followed by a national 
syphilis epidemic, each one more serious than the one before.
    I am asking you today to help us put an end to this cycle. 
It is within our power to eradicate this plague. It is 
epidemiologically and biologically feasible, but the window is 
narrow. Today's syphilis rates are at an all-time low, and 
prospects for elimination have never been better. But history 
has taught us that this will not last, not without a focused 
national effort and resources.
    Soon for the first time, we will have a national plan to 
eliminate syphilis. CDC developed this plan in close 
consultation with NCSD and other partners. The plan rests on 
three strategies, enhance surveillance of how we track and 
respond to the disease, vigorous community involvement to 
develop locally relevant strategies, and improved biomedical 
and behavioral intervention so we can intensify our activities 
that promote preventive behavior and provide increased access 
to care.
    This is an ambitious but eminently workable plan, and we 
are committed to its implementation. But let there be no 
uncertainty about one thing: Without adequate funding, this 
plan will fail. It will fail no matter how committed we are, no 
matter how hard we work to implement it.
    Syphilis is also associated with one of the most shameful 
episodes in our public health history, the Tuskegee Syphilis 
Study. You are likely familiar with the details. Hundreds of 
African-American men were used as experimental subjects in a 
study of the effects of untreated syphilis. They were not told 
they had syphilis, and they were not treated even though 
penicillin was available.
    The Tuskegee study has generated a distrust of the public 
health system on the part of many African-Americans. Today, 
syphilis remains a prime example of racial disparities in 
health status. One result of Tuskegee has been appropriately 
the establishment of a school of bioethics. We feel that 
another result of Tuskegee must be the elimination of syphilis.
    The achievement of this goal will mean that we have 
successfully addressed these racial disparities, that we have 
made progress in re-establishing the trust between the African-
American community and our public health system.
    Members of the subcommittee, we are asking you to fund this 
syphilis elimination effort at no less than $35 million. I need 
to emphasize that budgeting for this disease is different than 
budgeting for other diseases. There is a critical resource 
threshold that must be met if we are to succeed.
    If we under-fund this effort, we will fail. This cannot be 
a phased-in process. It requires an all-out effort right now. 
We have a rare and golden opportunity to do what other 
industrialized countries have done: add syphilis to the short 
list of diseases that we have beaten.
    With your support, and only with your support, will we be 
able to end this national embarrassment.
    In my written testimony, I have provided a number of other 
issues where we need funding. However, in closing, I just want 
to reiterate the need to assign a top and immediate priority to 
funding syphilis elimination, and to restate that without a 
fully funded effort, I can guarantee that another one of my 
colleagues will be here in 7 to 10 years to tell you about yet 
another syphilis epidemic, which has decimated the lives and 
health-care budget. That's a guarantee.
    Thank you for the opportunity to discuss syphilis and other 
STD issues that we face at the national and local levels. I 
would be happy to answer any questions.
    Mr. Bonilla. Thank you very much, Mr. Rabins, for your 
testimony here today. We appreciate it.
    [The prepared statement of Charlie Rabins follows:]

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                                           Tuesday, April 20, 1999.

        CHRONIC FATIGUE AND IMMUNE DYSFUNCTION SYNDROME RESEARCH


                                WITNESS

K. KIMBERLY KENNEY, EXECUTIVE DIRECTOR AND CEO, CHRONIC FATIGUE AND 
    IMMUNE DYSFUNCTION SYNDROME ASSOCIATION OF AMERICA
    Mr. Bonilla. Next we have K. Kimberly Kenney, who is 
executive director and CEO of the Chronic Fatigue and Immune 
Dysfunction Syndrome Association of America. Welcome.
    Ms. Kenney. Thank you. Thank for the opportunity to appear 
before the committee today, Mr. Bonilla. My name is Kim Kenney, 
and I am executive director of the CFIDS Association of 
America. CFIDS stands for chronic fatigue and immune 
dysfunction syndrome, also known as chronic fatigue syndrome or 
CFS.
    CFIDS is a serious illness that bears many similarities to 
MS. Symptoms include severe exhaustion, pain in the muscles and 
joints, and problems with memory and information processing. 
The cause is unknown. There is no standard treatment. And fewer 
than half of patients ever recover.
    CDC studies estimate that a half-million American men, 
women, and children of all races and socioeconomic classes have 
CFIDS, and we don't know why. Today I report that while we have 
made some progress in understanding CFIDS, despite this 
committee's 12 years of directive to hasten scientific 
progress, the CFIDS research effort has been severely 
compromised due to extraordinary problems at two agencies that 
have surfaced over the past year.
    Last August, Dr. William Reeves, chief of CDC's research 
program provided evidence to Representative Porter and Senator 
Reid that his superiors had grossly exaggerated to Congress the 
amount of money the CDC has spent on CFIDS research. In August, 
HHS's inspector general launched an investigation into Dr. 
Reeves' allegations. We are concerned that the IG's report has 
been intentionally stalled, making it difficult for Congress to 
introduce corrective measures in the Fiscal Year 2000 Labor-HHS 
appropriations bill.
    Even more disturbing, we have learned that unrelated 
expenses were charged to the CFS budget at the close of Fiscal 
Year 1998 while the IG was actively investigating suspect 
charges to the suspect account. In using the Freedom of 
Information Act, we uncovered use of CFS funds for unrelated 
expenses much earlier than 1995, draining millions more dollars 
from the sum-total CFS research effort.
    CDC's cavalier disregard for congressional direction and 
weak financial management of CFIDS research dollars must stop. 
We implore you to make certain that CDC acts as a responsible 
steward of CFS research funds and that it works diligently to 
improve understanding of CFIDS.
    We know that this committee is reluctant to earmark funds, 
but we believe that CDC's unwillingness to heed this 
committee's direction and lack of internal controls demand a 
more aggressive approach. We ask that the committee earmark an 
amount equivalent to the misspent funds for CDC's CFS research 
program with such funds to be made available over the next 
three fiscal years so that a cohesive research plancan be 
developed and executed.
    Similar, although less overt resource problems exist at the 
National Institutes of Health. Despite the committee's 
direction to expand CFS research at NIH, for the third 
consecutive year, CFIDS's research funding fell. This is 
especially alarming in light of the generous budget increase 
Congress gave NIH last year. In fact, between 1997 and 1998, 
actual spending by NIH decreased by 11 percent, to $6.4 
million. And actual spending--bless you [to Mr. Bonilla who 
sneezed]--for 1998 was 15 percent below planned spending for 
the same year.
    The CFIDS Association has met with many NIH institutes and 
offices, trying to understand the reasons for the erosion of 
support. We have concluded that the National Institutes for 
Allergy and Infectious Diseases, NIAID, the lead institute for 
CFS research, has not employed traditional outreach strategies 
used by other institutes to stimulate scientific interest in 
emerging health concerns.
    A perception exists among scientists that NIH is not 
interested in supporting CFS research. And while we will 
continue to urge NIH to fully utilize outreach strategies, 
without ready funds to support CFIDS research, it will be 
difficult to attract new talent to the field, to expand the 
scientific effort.
    For this reason we ask the committee to earmark $16 million 
for extramural CFIDS research at NIH.
    The DHHS Chronic Fatigue Coordinating Committee, of which I 
am a member, meet twice a year to assure interagency 
coordination and communication regarding CFS research. It is 
also a useful form for holding health agencies accountable for 
the Federal dollars they expend for CFS research and education 
activities.
    At meeting later this week, CFSCC will work to respond to 
the strong agreement among CFIDS patients, doctors, and 
researchers that the name chronic fatigue syndrome is 
unacceptable. Assistance from the Federal agencies is essential 
to making a change that will build understanding about the 
illness and remove the negative stigma that patients now 
experience.
    We ask the committee to express its support for the 
Secretary of Health to lead efforts to rename CFS and to 
undertake a prominent education campaign to inform the public 
that chronic fatigue syndrome by any name is a serious, 
disabling, and prevalent illness.
    Finally, Mr. Chairman, patients and doctors alike report 
that most health-care providers remain seriously uneducated 
about diagnosing and treating CFIDS. The Illinois Area Health 
Education Center is preparing a curriculum for training primary 
care providers about CFIDS with funding from its parent agency, 
HRSA. However, we have encountered reluctance from other areas 
of HRSA to expand the CFS education effort beyond the single 
project.
    We recommend that DHHS and the agencies of the CFSCC be 
instructed to boost efforts to inform health-care professionals 
about CFS.
    Mr. Chairman, Congressman Porter's long-standing personal 
support and that of this entire committee has been a source of 
great comfort and hope for persons with CFIDS. We need 
Congress' help to correct the very distressing events of the 
last year with clear and directive--clear and specific 
directives to the Federal agencies, particularly CDC and NIH.
    We have outlined additional requests in the written 
testimony. And I thank you for your leadership on behalf of 
500,000 people with CFIDS.
    Mr. Bonilla. Thank you very much, Ms. Kenney, for your 
testimony.
    [The prepared statement of K. Kimberly Kenney follows:]

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                                           Tuesday, April 20, 1999.

            MENTAL ILLNESS AND ADDICTIVE DISORDERS RESEARCH


                                WITNESS

DR. STEVEN S. MIRIN, MEDICAL DIRECTOR, AMERICAN PSYCHIATRIC ASSOCIATION
    Mr. Bonilla. We now have Dr. Steven Mirin, medical director 
for the American Psychiatric Association.
    Dr. Mirin. Mr. Chairman, I am Steven Mirin and the American 
Psychiatric Association, a medical specialty society 
representing more than 42,000 psychiatrists nationwide. I would 
ask that my written testimony be included in the record.
    Mr. Bonilla. It will be included. If you would like to 
summarize it, you are welcome to.
    Dr. Mirin. I will.
    Mr. Bonilla. As you wish. Thank you.
    Dr. Mirin. I will summarize the APA's recommendations for 
research on mental illness and addictive disorders at the 
National Institutes of Health. Before doing so, I want to 
convey to you and to the members of the subcommittee our 
appreciation on behalf of APA and the ad hoc group of on 
medical research funding your strong support for biomedical 
research, including last year's historic increase in NIH 
funding, and to ask you to consider again increasing the 
investing to NIH by 15 percent this year.
    Thanks to the research advances of the last two decades, 
many of which were funded by the National Institute of Mental 
Health, we now know that severe mental illness is the result of 
a combination of genetic, biological, and psychosocial factors. 
We also know that these diseases are eminently treatable and 
that breakthroughs in NIMH funded research now offer the 
promise of even more effective treatment that will dramatically 
reduce the suffering and improve the lives of millions of 
Americans with severe mental illness.
    To capitalize on the exciting new developments that have 
occurred in neuroscience, genetics, and medication development, 
APA supports increasing the NIMH budget to slightly over $1 
billion, about 18 percent. This increase will enable the 
institute to maintain its present commitments, expand clinical 
research, and take advantage of the promising scientific 
opportunities we have before us, particularly those related to 
the treatment of mental disorders in children and improving the 
mental health care of women and ethnic minorities.
    Turning to the National Institute on Drug Abuse, APA 
recommends an increase in funding to $765 million to support a 
broad research portfolio that ranges from studies of the 
effects of drug abuse on the brain to managed care on service 
delivery and treatment outcome. This level of investment will 
also allow for the further development of the new NIDA clinical 
trials network. This network will link academic centers of 
excellence with the regional network of community treatment 
programs, and in so doing, will enable us to test the 
usefulness of research-based treatment in a variety of real-
world treatment settings.
    We strongly support expanded funding for this important 
initiative. At the NIAAA, research on medication development to 
fetal alcohol syndrome and other projects is essential in 
combating alcoholism, which confronts more than 14 million 
Americans. We are particularly supportive of the high priority 
NIAAA places on exploring the genetics of alcoholism. And we 
know that a substantial portion of alcoholism is inherited, but 
that further research is necessary to identify the specific 
genes involved and to pave the way for more effective efforts 
at treatment and prevention. We support NIH and the NIAAA 
research agenda and recommend an increase in the appropriation 
to $337 million.
    In the final analysis, all the scientific information in 
the world will not help patients unless those who are ill 
receive appropriate treatment. Publicly funded mental health 
services are administered by the Center for Mental Health 
Services within SAMHSA. In my written testimony, we recommend 
major increases in these valuable programs, and we are 
particularly supportive of an increase in the community mental 
health block grant, which funds community-based services for 
severe mental illness in every State.
    We welcome the President's proposed $70 million increase in 
the block grant, but it will take substantially more than this 
amount to address the enormous unmet needs of patients with 
mental illness.
    Finally, just as Federal funding of biomedical research is 
essential to develop effective new treatments, health services 
research at NIH, SAMHSA, and the Agency for Health Care Policy 
and Research is needed to ensure that research advances are 
translated into delivery of quality medical care. APA believes 
that providers of care must be held accountable, not only for 
rendering care, but for doing so in a way that actually 
improves the lives of patients.
    We encourage the committee's careful attention to the 
degree of emphasis on service delivery and outcomes research 
within the portfolios of NIH, SAMHSA, and AHCPR.
    In closing, let me say that the APA applauds your 
leadership in funding the research and treatment so vital to 
the welfare of our patients. These Federal dollars are well 
invested. They help translate the promise of scientific 
discovery into saving and improving the lives of millions of 
Americans.
    Thank you for the opportunity to appear before you today.
    Mr. Bonilla. Thank you, Doctor, very much.
    [The prepared statement of Dr. Steven Mirin follows:]

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                                           Tuesday, April 20, 1999.

                      NATIONAL LIBRARY OF MEDICINE


                                WITNESS

JOSHUA LEDERBERG, PH.D., FRIENDS OF THE NATIONAL LIBRARY OF MEDICINE, 
    PROFESSOR AND RAYMOND AND BEVERLY SACKLER FOUNDATION SCHOLAR, 
    ROCKEFELLER UNIVERSITY, NEW YORK, NEW YORK
    Mr. Bonilla. We have two final witnesses, and as Dr. Joshua 
Lederberg comes forward, I appreciate the timeliness of the 
testimony we have heard today. I have to walk out of here in 10 
minutes. So the last two witnesses are going to have to comply 
very strictly with the rule. And I'm sorry that sometimes when 
you are at the end of the list, we have to squeeze a little 
harder. But I appreciate your patience here today.
    Thank you, Doctor.
    Mr. Lederberg. Mr. Chairman, thank you. I certainly intend 
to comply with those. I want to thank you for inviting me here, 
and I want to thank you personally for your unflagging 
attention and interest.
    I would like to begin by congratulating the Congress for 
its farsighted support of medical research over the years. 
There are many worthy, competing claims for Federal dollars, 
but you have been steadfast in your belief, which I share, that 
supporting biomedical scientific research is a sound investment 
in the Nation's physical and economic health.
    In the interest of full disclosure, I am proud to note that 
most of my own work in genetics has been supported in major 
part by tax dollars, as have the overall medical research 
programs at the University of Wisconsin, Stanford University, 
and Rockefeller University, where I have worked during the past 
50 years. And I gratefully acknowledge that fact when I 
publish.
    Innumerable studies have shown the cost-effectiveness of 
these investments, even when measured in their narrowest 
economic terms, not to mention their human benefit to the 
health of our citizens and to the world's. As generous as it 
is, the support for research remains at only a few percent of 
our total national health expenditures.
    I am here today as a member of the Friends of the National 
Library of Medicine, a non-profit organization of medical 
organizations and individuals who support the world's largest 
medical and scientific library. I also have the privilege of 
serving on the library's board of regents, and I Chair the 
subcommittee on research and development.
    As this committee is well aware, the library is an 
important part of the National Institutes of Health and its 
mission. Over the years, you and the Congress as a whole have 
recognized that the information programs of the library are a 
vital part of the biomedical research enterprise continuum. 
Access to up-to-date scientific information is critically 
important for training students in the health professions. It 
ensures that those taking care of patients can make use of the 
latest research findings. It is an integral part of the 
research process, providing a knowledge base upon which 
scientists build and announce new discoveries so that they may 
be critically review by peers.
    These roles demonstrate that the National Library of 
Medicine has a central part to play in our fight against 
disease. Support for the NLM's programs is indispensable for 
the efficiency and success of laboratory research and 
applications to health needs.
    Funding of the NLM merits parity with the growth of the NIH 
budget as a whole.
    The NLM is today recognized as the primary source of 
reliable health information not only for scientists and the 
health professions, but also the general public. NLM's immense 
Medline database, databank of 11 million references and 
abstracts now accessible free on the worldwide web is search 
180 million times a year. One-third of these inquiries are by 
the public. This is an amazing record of achievement that has 
not received the attention it deserves.
    Because my own field is genetics, I was especially 
heartened when 11 years ago the Congress anticipated the 
growing importance of molecular biology and created the 
National Center for Biotechnology Information as part of the 
NLM. Your foresight proved accurate. For the past decade has 
seen a virtual explosion of the genomic information.
    Today the center maintains immense data banks to receive 
this information from scientists worldwide, organizes it, and 
creates sophisticated tools that allow the data to be used in 
making further discoveries.
    The center's GenBank database of DNA sequence information 
now contains some 3 million sequences, with more than 2 billion 
base pairs. The website for GenBank and other NLM services such 
as Medline are made freely available and receive some 800,000 
queries per day from 100,000 scientists and others around the 
world. About three-quarters of this is Medline searching; the 
rest is GenBank.
    In addition to academic institutions and the public, major 
biotechnology and pharmaceutical firms are among the heaviest 
users of this website. They search GenBank and use 
sophisticated computational tools created by the center's 
scientists to conduct comparative sequence analysis. And this 
is very much a part of the unquestioned dominance of the United 
States science and technology in the biotechnology era.
    The center's scientists not only maintain GenBank, but they 
have created a very popular web-based system for accessing 
NLM's Medline. This new system, called PubMed, has 
revolutionized the way that Medline is searched. It is 
powerful, flexible, easy to use, and provides links to an 
increasing variety of supporting information such as complete 
articles when these are available on publishers' websites.
    The popularity of Medline on the web has led the library to 
develop a new service called Medline Plus, which provides 
access to a wide variety of consumer-oriented health 
information from many authoritative sources, including, of 
course, the NIH. This new service that began six months ago has 
been widely praised. We know that many patients, many 
individuals try to expand their insight into medical problems 
by the use of the internet but have great difficulty in getting 
critically assessed and authentic information from those 
sources. And Medline Plus provides enormous help for that.
    As a newly appointed regent, I was gratified to discover 
the diversity of the library's programs, programs such as the 
visible----
    Mr. Bonilla. Dr. Lederberg, I am sorry to interrupt you, 
but I am going to have to have you submit the remainder of your 
testimony for the record or else we will not be able to 
conclude our hearing today.
    Mr. Lederberg. Thank you very much.
    Mr. Bonilla. And I apologize for that. I did allow you to 
go a little longer than your allotted time.
    Mr. Lederberg. I am sorry if I exceeded it. Thank you, sir.
    Mr. Bonilla. No problem. Thank you, sir, for your 
testimony.
    [The prepared statement of Dr. Joshua Lederberg, Ph.D., 
follows:]

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                                           Tuesday, April 20, 1999.

                     PROTECTION OF RESEARCH ANIMALS


                                WITNESS

CATHY LISS, SENIOR RESEARCH ASSOCIATE, SOCIETY FOR ANIMAL PROTECTIVE 
    LEGISLATION
    Mr. Bonilla. We finally have this afternoon, Cathy Liss, 
who is a senior research associate for the Society for Animal 
Protective Legislation. Welcome
    Ms. Liss. Thank you very much. Good afternoon, Mr. Bonilla. 
I appreciate the opportunity to give our presentation. I will 
make it extremely short.
    Two of our requests are in essence not for additional 
monies but rather for report language which would provide 
oversight to ensure that monies provided are used properly and 
that research is conducted properly and in compliance with 
Federal law.
    The first is to call your attention to the Coulston 
Foundation, one amongst many recipients of NIH funds who are 
chronic violators of the Animal Welfare Act, responsible for 
the deaths of numerous endangered species and endangered 
chimpanzees at their facilities. Back since 1993 they have been 
violating the law again in 1994, in 1998 and 1999 that for them 
to receive literally millions of dollars in NIH funds is highly 
inappropriate and certainly we question the value of research 
conducted at a facility that cannot meet the minimum 
requirements under the Animal Welfare Act.
    Separate from that, we would also encourage that we ensure 
the integrity of research and protect family pets by 
encouraging an NIH policy against acquisition of dogs and cats 
from random source dealers. And Congressman Porter has raised 
this issue a few weeks ago, when NIH came here to testify, and 
we certainly appreciate his raising this issue.
    Just this past February, the Department of Justice 
announced the conviction of nine individuals on charges related 
to theft of animals for sale to research laboratories. The ring 
leader, a random-source dealer licensed by the Department of 
Agriculture, sold hundreds of dogs to laboratories in 
California and Washington State, including the University of 
Southern California, which has received nearly $100 million 
from NIH, and Cedars Sinai Medical Center, which has received 
about $10 million.
    Stolen pets have been purchased, experimented on, and 
killed in research institutions that receive funds from NIH. 
Taxpayer dollars should not contribute to this unscrupulous 
trade. Random-source dog and cat dealers are the problem, and 
though these dealers are licensed and inspected by USDA, the 
Department of Agriculture is unable to provide an assurance 
that animals sold by these dealers are not stolen pets.
    Unfortunately, a number of individuals are making a lot of 
money acquiring pet dogs and cats through theft or fraud and 
then selling them to the research laboratories.
    This needn't be the case, and random-source dealers are not 
used in supplying dogs and cats for intramural research at NIH. 
This excellent example should be followed in providing funds 
for extramural research. Random-source dealers should not be 
used as a source for extramural research. These animals can be 
obtained from licensed breeders and from some municipal pounds.

    And two other issues. One is that we encourage an 
appropriation of approximately $8.6 million for the immediate, 
permanent retirement and humane care of chimpanzees no longer 
needed for biomedical research. They have contributed very much 
to research, and when they are finished with that research, are 
deserving of a good retirement facility. It would also be more 
cost-effective to provide them with a retirement situation 
versus maintaining them in a laboratory as currently happens.
    And finally, we encourage the appropriation of $2 million 
for research on refinements in primate handling, care, and 
housing to permit compliance with the Federal Animal Welfare 
Act.
    Thank you very much.
    Mr. Bonilla. Thank you, Ms. Liss, for your testimony and 
for being patient with us today. You are the last witness on 
our list today, and we appreciate your waiting and your very 
good testimony you presented.
    Ms. Liss. Thank you very much.
    [The prepared statement of Cathy Liss follows:]

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    Mr. Bonilla. At this time the committee will be adjourned 
and recess until April 21st at 10 a.m.

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                 O R G A N I Z A T I O N A L I N D E X

                              ----------                              
                                                                   Page
AIDS Action Council..............................................  1008
AIDS Policy Center for Children, Youth and Families..............  1020
Air Force Sergeants Association..................................  2862
Alzheimer's Association..........................................   970
American Academy of Dermatology..................................  3439
American Academy of Family Physicians............................    79
American Academy of Neurological Association.....................  1463
American Academy of Ophthalmology................................   303
American Academy of Orthopedic Surgeons..........................    44
American Academy of Otolaryngology, Head and Neck Surgery, Inc...  1045
American Academy of Pediatric Dentistry..........................   416
American Academy of Pediatrics...................................   981
American Academy of Physical Medicine and Rehabilitation.........  1479
American Academy of Physician Assistants.........................  3136
American Association for Cancer Research.........................  1063
American Association of Anatomists...............................  1395
American Association of Blood Banks..............................  3003
American Association of Colleges of Nursing......................  1134
American Association of Community Colleges.......................  1077
American Association of Dental Research..........................   449
American Association of Dental Schools...........................   428
American Association of Immunologists............................  1659
American Association of Nurse Anesthetists.......................  2777
American Association of School Administrators....................  1115
American Association of University Health Science Centers........  1277
American Cancer Society..........................................   569
American Chemical Society........................................  3229
American College of Cardiology...................................  3197
American College of Preventive Medicine..........................  2960
American College of Surgeons.....................................  1294
American Dental Association......................................  1165
American Dental Hygienists' Association..........................  3109
American Diabetes Association....................................  1176
American Educational Research Association, American Psychological 
  Association....................................................   387
American Foundation for AIDS Research............................  1314
American Gastroenterological Association.........................  2438
American Heart Association.......................................  1145
American Indian Higher Education Consortium......................  2995
American Liver Foundation........................................  1186
American Lung Association and American Thoracic Society..........   588
American Museum of Natural History...............................  1859
American Nurses Association......................................  1955
American Obesity Association.....................................  3182
American Optometric Association..................................  2816
American Organization of Nurse Executives........................  1931
American Physiological Society...................................  3071
American Psychiatric Association.................................  1626
American Psychiatric Nursing Association.........................  1941
American Psychological Association...............................  1972
American Psychological Society...................................  1989
American Public Health Association...............................  2396
American Public Power Association................................  2924
American Public Television Stations..............................  1033
American Public Transit Association..............................  2005
American RehabAction Network.....................................  2020
American School Health Association...............................  3346
American Social Health Association...............................  2031
American Society for Clinical Nutrition..........................  2990
American Society for Microbiology............................1914, 3202
American Society for Nutritional Sciences........................  2045
American Society for Pharmacology and Experimental Therapeutics..  3289
American Society of Clinical Oncology............................  1798
American Society of Clinical Pathologists........................   812
American Society of Hematology...................................  2059
American Society of Nephrology...............................2385, 2758
American Society of Pediatric Nephrology.........................  1715
American Society of Transplantation..............................  1364
American Society of Tropical Medicine and Hygiene................  3387
American Speech-language Hearing Association.....................  2767
American Trauma Society..........................................   556
American Urological Association..................................   143
Arkansas Center for Birth Defects Research and Prevention........  1682
Association for Career and Technical Education................159, 2901
Association for Health Services Research.........................  2073
Association for Professionals in Infection Control and 
  Epidemiology...................................................   262
Association for Research in Vision and Ophthalmology.............    65
Association of Academic Psychiatrists............................  1479
Association of American Medical Colleges......................998, 3019
Association of American Universities.............................   236
Association of Independent Research Institutes...................   325
Association of Maternal and Child Health Programs................  2657
Association of Minority Health Professions Schools...............   281
Association of Population Centers................................  2671
Association of Professors of Dermatology.........................   105
Association of Schools of Public Health..........................   119
Association of State and Territorial Health Officials............  2772
Asthma and Allergy Foundation of America.........................   133
Autism Society of America....................................2709, 2956
Big Brothers and Big Sisters of America..........................  1847
Biotechnology Industry Organization..............................  1255
BlueCross and BlueShield Association.............................  1265
Boston Symphony Orchestra........................................  1231
California School of Professional Psychology.....................  1522
Center for Environmental Health Research and Service.............  2811
Children's Brain Diseases Foundation.............................  2357
Children's Brittle Bone Foundation...............................   928
Children's Heart Foundation......................................  3365
Christopher Reeve Foundation.....................................   719
Chronic Fatigue and Immune Dysfunction Syndrome Association of 
  America........................................................  1613
Citizens' Scholarship Foundation of America..................2958, 3193
City of Gainesville..............................................  3406
City of Miami Beach..............................................  3411
City of Newark...................................................  3401
Close-Up Foundation..............................................  3352
Coalition for American Trauma Care...............................  1739
Coalition for Health Funding.....................................  1752
Coalition for Heritable Disorders of Connective Tissue...........  2472
Coalition for Patient Advocates for Skin Disease Research........  1763
Coalition for the Advancement of Health through Behavioral and 
  Social Science Research........................................  3013
College and Problems of Drug Dependence..........................   224
Committee of Ten Thousand........................................  2700
Committee on Education Funding...................................  1768
Condell Medical Center.......................................2822, 2827
Consortium of Social Science Association.........................   387
Cooley's Anemia Foundation.......................................  1554
Council of State Administrators of Vocational Rehabilitation.....  2020
Council of State and Territorial Epidemiologists.................  3086
Crohn's and Colitis Foundation of America........................    96
Cystic Fibrosis Foundation.......................................  3094
Digestive Disease National Coalition's Public Policy Committee...  2484
Dystonia Medical Research Foundation.............................   770
Dystrophic Epidermolysis Bullosa Research Association of America, 
  Inc............................................................  3082
East 60th Street Community Youth Center..........................  2088
Easter Seals.....................................................  3433
Ehlers-Danlos National Foundation................................  2895
Elmira College...............................................2806, 3381
Epilepsy Foundation..............................................   359
Facioscapulohumeral Society......................................  2364
Federation of American Societies for Experimental Biology........   370
Florida Department of Education..................................   736
Florida State University.........................................  3430
Foundation Fighting Blindness....................................   348
Foundation for Ichthyosis and Related Skin Types.................  2911
Friedreich's Ataxia Research Alliance............................   612
Friends of NICHD Coalition.......................................  3223
Friends of the National Library of Medicine......................  1638
GED Testing Service..............................................  2869
Genome Action Coalition..........................................    55
Haymarket Center.................................................   539
Health Professions and Nursing Education Programs................  2677
Helen Keller International.......................................  2430
Helen Keller National Center for Deaf-Blind Youths and Adults....  3172
Hospital for Special Surgery.....................................  3056
Humane Society of the United States..............................  3210
Illinois Area Health Education Centers...........................   636
Illinois Community College Board.................................   626
Immune Deficiency Foundation.....................................   779
Infectious Diseases Society of America...........................   644
International Myeloma Foundation.................................  3162
Interstate Conference of Employment Security Agencies............   662
Interstitial Cystitis Association................................  2421
Jefferson County Public School...................................    10
Jeffrey Modell Foundation........................................  1703
Joint Council of Allergy, Asthma and Immunology..................  3121
Joint Steering Committee for Public Policy.......................   950
Juvenile Diabetes Foundation International.......................  1870
Labor Policy Association.........................................  2712
Legal Action Center..............................................   819
Lupus Foundation of America......................................   757
Lymphoma Research Foundation of America..........................   313
March of Dimes...................................................   831
Medical Library Association......................................  1899
Mental Retardation and Developmental Disabilities Research 
  Centers........................................................  3230
Metropolitan Family Services.....................................  1880
Minann, Inc......................................................  2689
Montefiore Medical Center........................................  3008
Montgomery County Stroke Club....................................  3285
Multiple Sclerosis Association of America........................  2907
Museum of Science and Industry...................................    30
Museums and Universities Supporting Educational Enrichment.......  3048
National Alliance for Abuse Awareness............................  3447
National Alliance to End Homelessness........................2661, 3131
National Alopecia Areata Foundation..............................  1782
National Asian American Telecommunications Association...........  3041
National Association for Equal Opportunity in Higher Education...   248
National Association for State Community Services Programs.......  2666
National Association of Anorexia Nervosa and Associated Disorders  1789
National Association of Community Health Center..................   902
National Association of County and City Health Officials.........  2985
National Association of Foster Grandparent Program Directors.....  1352
National Association of Foster Grandparent Program Directors.....  3251
National Association of Orthopaedic Nurses.......................  3099
National Association of Pediatric Nurse Associates and 
  Practitioners, Inc.............................................  2891
National Association of Physicians for the Environment...........  2652
National Association of Public Hospitals.........................  3000
National Association of State Universities and Land-Grant 
  Universities...................................................  3293
National Association of State Universities and Land-Grant 
  Colleges.......................................................  3243
National Black Programming Consortium............................  3043
National Bladder Foundation......................................  1244
National Child Abuse Coalition...................................  3051
National Coalition for Cancer Research...........................  1197
National Coalition for Heart and Stroke Research.................   849
National Coalition for Osteoporosis and Related Bone Disease.....   858
National Coalition of STD Directors..............................  1605
National Congress of American Indians............................  3141
National Council of Rehabilitation Education.....................   868
National Council of Social Security Management Associations......   170
National Council of State Agencies for the Blind.................   877
National Crime Prevention Council................................  2783
National Depressive and Manic-Depressive Association.............  2950
National Energy Assistant Director's Association, Inc............  3176
National Federation of Community Broadcasters....................  2461
National Foundation for Ectodermal Dysplasias....................   883
National Fuel Funds Network......................................  2981
National Head Start Association..................................  3262
National Hemophilia Foundation...................................  3336
National Indian Education Association............................  2747
National Indian Impacted Schools Association.....................  3066
National Job Corps Association...................................   892
National Kidney Foundation.......................................  1454
National Medical Association.....................................   789
National Military Family Association.............................  3025
National Minority Public Broadcasting Consortia..................  3035
National Multiple Sclerosis Society..............................  1377
National Neurofibromatosis Foundation............................  2374
National Nutritional Foods Association...........................  2738
National Organization of Rare Disorders..........................  1812
National Prostate Cancer Coalition...............................  3215
National Psoriasis Foundation....................................  3078
National Public Radio............................................  3279
National Right to Work Committee.................................  2969
National Rural Health Association................................   399
National Sleep Foundation........................................  1671
National Treasury Employee Union.................................  3393
Neurofibromatosis Foundation.....................................  1595
New York University School of Medicine...........................   480
New York University..............................................   670
North American Society of Pacing and Electrophysiology...........   682
North American Transplant Coordinators Organization..............  3104
Old Sturbridge Village...........................................  2791
Oncology Nursing Society.........................................   708
Oxalosis and Hyperoxaluria Foundation............................  2975
Pacific Islanders in Communications..............................  3045
Parent Project for Muscular Dystrophy............................   939
Parkinson's Action Network.......................................   212
Philadelphia College of Osteopathic Medicine.....................  3220
Pinon Community School Board, Inc................................  3062
Polycystic Kidney Research Foundation............................  1094
Population Association of America................................  2671
Prostatitis Foundation...........................................  1575
Public Policy Council............................................  3271
Recording for the Blind and Dyslexic.............................  2695
Research Society on Alcoholism...................................  1208
Research!America.................................................  1409
Rock Point Community School Board................................  3065
Rotary International.............................................  1053
Safety Net Coalition.............................................  2820
San Francisco AIDS Foundation....................................  1444
Santa Rosa Memorial Hospital.....................................  3452
Scleroderma Research Foundation..................................  1543
Sinai Family Health Centers......................................  1219
Society for Animal Protective Legislation....................1648, 3257
Society for Investigative Dermatology............................  1434
Society of Gynecological Oncologists.............................  1501
Society of Neuroscience..........................................  1826
Society of the Advancement of Women's Health Research............  2703
Society of Toxicology............................................   504
Southwest Texas State University.................................  2832
Spina Bifida Association of America..............................   747
Sudden Infant Death Syndrome Alliance............................   291
Task Force on Developmental Disabilities of the Consortium for 
  Citizens with Disabilities.....................................   181
The American Legion..............................................  2799
The Center for Victims of Torture................................  2802
The Chromosome 18 Registry and Research Society..................  2884
The CORE Center..............................................3187, 3376
The Council for Chemical Research................................  3268
The FDA-NIH Council..............................................  3115
The Fleet Reserve Association....................................  3357
TMJ Association, LTD.............................................  3074
Traditional Values Coalition.....................................  1564
Traumatic Brain Injury Act.......................................  2683
Tri-Council for Nursing..........................................  2944
United Distribution Companies....................................  2409
United Negro College Fund........................................  2100
United Tribes Technical College..................................  1424
University of Louisville.........................................    12
University of Medicine and Dentistry of New Jersey...............  3424
University of Miami..............................................  3415
University of Michigan...........................................  1582
University of Virginia School of Medicine........................   439
Voice of the Retarded............................................  2927

                                
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