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



 
           CHILDREN'S HEALTH: BUILDING TOWARD A BETTER FUTURE

=======================================================================

                                HEARING

                               before the

                            SUBCOMMITTEE ON
                         HEALTH AND ENVIRONMENT

                                 of the

                         COMMITTEE ON COMMERCE
                        HOUSE OF REPRESENTATIVES

                       ONE HUNDRED SIXTH CONGRESS

                             FIRST SESSION

                               __________

                            OCTOBER 12, 1999

                               __________

                           Serial No. 106-60

                               __________

            Printed for the use of the Committee on Commerce


                                


                      U.S. GOVERNMENT PRINTING OFFICE
 60-361CC                    WASHINGTON : 1999
------------------------------------------------------------------------------
                   For sale by the U.S. Government Printing Office
 Superintendent of Documents, Congressional Sales Office, Washington, DC 20402


                               
                    ------------------------------  

                         COMMITTEE ON COMMERCE

                     TOM BLILEY, Virginia, Chairman

W.J. ``BILLY'' TAUZIN, Louisiana     JOHN D. DINGELL, Michigan
MICHAEL G. OXLEY, Ohio               HENRY A. WAXMAN, California
MICHAEL BILIRAKIS, Florida           EDWARD J. MARKEY, Massachusetts
JOE BARTON, Texas                    RALPH M. HALL, Texas
FRED UPTON, Michigan                 RICK BOUCHER, Virginia
CLIFF STEARNS, Florida               EDOLPHUS TOWNS, New York
PAUL E. GILLMOR, Ohio                FRANK PALLONE, Jr., New Jersey
  Vice Chairman                      SHERROD BROWN, Ohio
JAMES C. GREENWOOD, Pennsylvania     BART GORDON, Tennessee
CHRISTOPHER COX, California          PETER DEUTSCH, Florida
NATHAN DEAL, Georgia                 BOBBY L. RUSH, Illinois
STEVE LARGENT, Oklahoma              ANNA G. ESHOO, California
RICHARD BURR, North Carolina         RON KLINK, Pennsylvania
BRIAN P. BILBRAY, California         BART STUPAK, Michigan
ED WHITFIELD, Kentucky               ELIOT L. ENGEL, New York
GREG GANSKE, Iowa                    THOMAS C. SAWYER, Ohio
CHARLIE NORWOOD, Georgia             ALBERT R. WYNN, Maryland
TOM A. COBURN, Oklahoma              GENE GREEN, Texas
RICK LAZIO, New York                 KAREN McCARTHY, Missouri
BARBARA CUBIN, Wyoming               TED STRICKLAND, Ohio
JAMES E. ROGAN, California           DIANA DeGETTE, Colorado
JOHN SHIMKUS, Illinois               THOMAS M. BARRETT, Wisconsin
HEATHER WILSON, New Mexico           BILL LUTHER, Minnesota
JOHN B. SHADEGG, Arizona             LOIS CAPPS, California
CHARLES W. ``CHIP'' PICKERING, 
Mississippi
VITO FOSSELLA, New York
ROY BLUNT, Missouri
ED BRYANT, Tennessee
ROBERT L. EHRLICH, Jr., Maryland

                   James E. Derderian, Chief of Staff
                   James D. Barnette, General Counsel
      Reid P.F. Stuntz, Minority Staff Director and Chief Counsel

                                 ______

                 Subcommittee on Health and Environment

                  MICHAEL BILIRAKIS, Florida, Chairman

FRED UPTON, Michigan                 SHERROD BROWN, Ohio
CLIFF STEARNS, Florida               HENRY A. WAXMAN, California
JAMES C. GREENWOOD, Pennsylvania     FRANK PALLONE, Jr., New Jersey
NATHAN DEAL, Georgia                 PETER DEUTSCH, Florida
RICHARD BURR, North Carolina         BART STUPAK, Michigan
BRIAN P. BILBRAY, California         GENE GREEN, Texas
ED WHITFIELD, Kentucky               TED STRICKLAND, Ohio
GREG GANSKE, Iowa                    DIANA DeGETTE, Colorado
CHARLIE NORWOOD, Georgia             THOMAS M. BARRETT, Wisconsin
TOM A. COBURN, Oklahoma              LOIS CAPPS, California
  Vice Chairman                      RALPH M. HALL, Texas
RICK LAZIO, New York                 EDOLPHUS TOWNS, New York
BARBARA CUBIN, Wyoming               ANNA G. ESHOO, California
JOHN B. SHADEGG, Arizona             JOHN D. DINGELL, Michigan,
CHARLES W. ``CHIP'' PICKERING,         (Ex Officio)
Mississippi
ED BRYANT, Tennessee
TOM BLILEY, Virginia,
  (Ex Officio)

                                  (ii)


                            C O N T E N T S

                               __________
                                                                   Page

Testimony of:
    Kattan, Meyer, Department of Pediatrics, Mt. Sinai Hospital..    35
    Mahr, Wesley, accompanied by Mackenzie Mahr, on behalf of 
      Juvenile Diabetes Foundation International.................    27
    Pierce, William, National Council for Adoption...............    29
    Russo, Rene, Board Member, Cure Autism Now, accompanied by 
      Jonathon Shestack, President, Cure Autism Now..............    10
    Weisman, Richard S., Department of Pediatrics, University of 
      Miami School of Medicine, on behalf of American Association 
      of Poison Control Centers..................................    39
    Young, Francine..............................................    13

                                 (iii)



           CHILDREN'S HEALTH: BUILDING TOWARD A BETTER FUTURE

                              ----------                              


                       TUESDAY, OCTOBER 12, 1999

                  House of Representatives,
                             Committee on Commerce,
                    Subcommittee on Health and Environment,
                                                    Washington, DC.
    The subcommittee met, pursuant to notice, at 3:40 p.m., in 
room 2123, Rayburn House Office Building, Hon. Michael 
Bilirakis (chairman) presiding.
    Members present: Representatives Bilirakis, Greenwood, 
Ganske, Brown, Waxman, Stupak, Strickland, DeGette, and Towns.
    Staff present: Jason Lee, majority counsel; Marc Wheat, 
majority counsel; Kristi Gillis, legislative clerk; and John 
Ford, minority counsel.
    Mr. Bilirakis. I call to order this hearing on Children's 
Health: Building Toward a Better Future. Before I go into the 
chairman's opening statement, we just held a press conference 
out in the triangle in front of the Capitol; and it was just 
gang busters. It was just wonderful; led, of course, by Ms. 
Russo. There was a lot of demonstrating there and everything 
for the cameras which is really just wonderful. It is democracy 
in action. The only problem is the House rules. The rules of 
the House prohibit the use of signs and placards and whatnot on 
the floor as well in the hearing room.
    So please we are all together on this. We all want to 
succeed as well as we possibly can, but I would ask you in a 
very nice way to try to keep down your enthusiasm. The applause 
and that sort of thing from the audience, if you have ever been 
in the House chambers up in the gallery, it is not allowed and 
not allowed here. We sometimes will applaud the witnesses, but 
it is not a good idea for the witnesses to applaud us. So in 
any case, I ask your cooperation.
    Mr. Brown. Mr. Chairman, normally they don't want to.
    Mr. Bilirakis. I guess I don't blame them. As a father and 
grandfather, I know that our children are America's future. It 
is appropriate, therefore, that we place a great deal of 
emphasis on their health and well being.
    Today we will examine some of the difficult barriers that 
we face in working to improve children's health. I want to 
thank all of our witnesses for taking the time to share their 
knowledge and personal experiences with us. Before we begin, we 
should consider how far we have come as a Nation. A baby born 
in American today has a life expectancy 30 years longer than a 
child born at the turn of the century. Public health 
initiatives are largely responsible for this vast, vast 
improvement.
    But we cannot, we must not rest on our laurels because much 
more remains to be done. Today we will learn about some deeply 
troubling trends in the rates of certain childhood afflictions. 
We will also learn what Congress can do to help.
    First, we will discuss the increasing prevalence of autism, 
which is now the third most common developmental disorder 
affecting America's children. For many years, autism was 
tragically misdiagnosed as an emotional disorder. Today, 
however, scientists hope that new medical treatments and a cure 
can be identified.
    We will also examine the nearly epidemic proportion of 
children, almost 5 million nationwide, who suffer from 
childhood asthma. In addition, we will focus on the 
debilitating effects of juvenile diabetes which affects 
hundreds of thousands of American children in every State. 
Sadly despite its name, this disease, as you know, is never 
outgrown.
    Today we will also discuss measures to promote adoption of 
children with special health needs. Although the rate of infant 
deaths due to birth defects has been cut in half since 1960, 
birth defects remain the leading cause of infant mortality and 
a major cause of disability in young children. I share the 
heartfelt desire of the full committee chairman, Tom Bliley, 
and many of the members of this subcommittee to encourage the 
adoption of these special children.
    Finally, we will also focus on one of the most effective 
means currently available for reducing childhood deaths, namely 
poison prevention and control. About 60 percent of poisonings 
each year involve children less than 6 years old. I look 
forward to hearing about how we can help prevent the millions 
of poisonings that occur annually.
    Childhood diseases afflict pain and disruption on countless 
American children and their families. Certainly their human 
toll cannot be calculated. However, they also take a financial 
toll through billions of dollars in increased health care cost. 
From a financial perspective, therefore, every dollar spent by 
the Federal Government on disease research and prevention is an 
extremely wise investment. For the patients' families, 
caregivers, and friends whose lives have been touched by 
childhood diseases, we should renew and strengthen our 
commitment to finding the causes of and cures for these 
terrible afflictions.
    I want to again express my sincere gratitude to all of the 
witnesses who will appear before us and in particular, of 
course, I want to extend a special welcome to Ms. Russo, Ms. 
Rene Russo, who has taken time from her very, very busy 
schedule to speak about a topic that I know matters a great 
deal to her personally.
    I would also like to acknowledge the efforts of several 
members of this subcommittee who have worked to develop 
individual bills addressing many of the topics before us today. 
I look forward to working together with you and the ranking 
member, Mr. Brown, to develop a comprehensive children's health 
measure that can be enacted with bipartisan support. At this 
time I yield to my good friend from Ohio, the ranking member of 
this subcommittee, Mr. Brown.
    Mr. Brown. Mr. Chairman, thank you. Welcome to Ms. Young 
and Ms. Russo and our other distinguished witnesses. Thank you 
for joining us. Today's hearing calls attention to a wide range 
of children's issues, each of them critically important in its 
own right.
    Our first panel will focus on autism, an alarmingly 
prevalent disorder about which far too little is known. The 
children of autism relate to their world in a way that we don't 
fully understand and cannot fully penetrate. What we do know is 
that aspects of life that depend upon for joy and comfort, 
motivation and personal fulfillment, things like physical 
contact, sensory stimulus, social interaction, variation in our 
daily activities and interests can be terrifying for autistic 
children. During this hearing, we will focus on the realties of 
autism and what we can do to make progress toward prevention 
and treatment of this disorder.
    Our second panel will cover a variety of topics, including 
adoption of children with special needs, juvenile diabetes, 
pediatric asthma, and poison control. I will reserve my 
comments on the adoption issue for the moment and briefly note 
the importance of other issues we will discuss.
    Juvenile or type 1 diabetes is a chronic and degenerative 
illness affecting virtually everybody's system. Taking insulin 
doesn't cure diabetes, it merely helps to control it. The range 
of serious health problems associated with type 1 diabetes is 
truly overwhelming, blindness, kidney failure, heart disease, 
stroke, nerve damage; and that is not the complete list. We 
know a great deal about diabetes, but we still have no real 
cure. That is why our continued investment in research and 
development and research and treatment is so critically 
important.
    Pediatric asthma is a chronic and potentially life 
threatening health condition that affects nearly 5 million 
children under the age of 18. Asthma can be particularly 
devastating for children because it can severely restrict their 
ability to participate in normal physical children's 
activities. Asthma generates enormous public and private and 
health care costs. Efforts to reduce the incidence, the 
prevalence and the severity of asthma are clearly in the best 
interests of children and the health system as a whole.
    Another topic for our second panel is poison control. I was 
surprised to learn that poisoning is the third most common form 
of unintentional death in the United States, but not surprised 
to learn that children are disproportionately affected.
    Finally, I would like to touch on adoption of special needs 
children. Mr. Chairman, I understand that as is standard for 
these hearings, the majority staff held a briefing last week 
and discussed the topics on today's agenda. During that 
briefing, Democratic staff asked whether abortion issues would 
play any role in today's discussion. They were assured that 
these issues would not be part of today's hearing.
    Apparently, however, Mr. Pierce alludes to that very topic 
several times in his written testimony that he himself, Mr. 
Pierce, provided. We are pleased, and we think it very 
important to discuss the topic of adoption for special needs 
children as long as adoption and adoption alone, not abortion, 
is, in fact, what the discussion was about. This hearing is too 
important to get waylaid in those kinds of ideological issues.
    Mr. Chairman, I hope we all share the same agenda today. 
The topic we are discussing is far too important to be 
compromised by any secondary motives. Thank you, Mr. Chairman.
    Mr. Bilirakis. I thank the gentleman. Mr. Greenwood for an 
opening statement.
    Mr. Greenwood. Thank you, Mr. Chairman. We will hear 
statistics about autism from our witnesses, and we have already 
heard them--previous speakers cite those statistics. Suffice it 
to say, it is a very prevalent and probably increasingly 
prevalent disease in our society affecting 400,000 Americans, 
one out of every 500 children, and the funding and the research 
that is devoted to this disorder is far less than should be. 
The reason that I got involved in this really goes back to the 
fact that I was--used to be a caseworker and worked--I was as a 
house parent, at one time, and I worked with special needs 
children.
    I watched parents see their children go through what normal 
children do. The joy of a parent is to watch a child open up 
like a flower and begin to explore its world and communicate 
with its parents and the world. For the parent of an autistic 
child, the parent sees that child open up and then start to 
close. It is a heartbreaking, heartwrenching experience; and 
these parents who love these children very much are sort of 
watching them recede from their touch, are desperate, desperate 
to fight this disorder, desperate to find a cure, even 
treatment that will ameliorate the condition.
    The reason that Rene Russo is here is because she and I 
have a mutual friend. His name is Jon Shestack, the gentleman 
seated to her left. Jon and his wife, Portia, have a little boy 
named Dov. Dov has gone through this experience and Jon has 
shared with me his experience, his feelings in very honest 
terms. What we intend to do is create five centers of 
excellence where the best scienctists, the best doctors, the 
best researchers in the world will come to these centers and 
they will engage in basic research on what causes autism, how 
to treat autism, how to cure autism, and how to prevent autism. 
That will mean that parents of children equally concerned and 
desperate all over this country will be able to find access 
near their home, the region in which they live to take their 
children and make sure that their children have every 
opportunity known to science at the time to do what is best for 
their child, to bring their child back to that opening flower. 
I know that Rene Russo was--this is not her usual gig coming to 
Congress. She said that it was sort of like asking a ballerina 
to pitch the World Series or something, not what she is known 
for. But I know that she is here because of her love for a 
little boy named Dov. We are just delighted to have you engaged 
in this fight. We are going to win this fight, and we think we 
have a new lethal weapon in Rene Russo and thank you so much 
for being here. I yield back.
    Mr. Bilirakis. I thank the gentleman. Ms. DeGette for an 
opening statement.
    Ms. DeGette. Thank you, Mr. Chairman. As someone who cares 
a lot about children's health, I want to congratulate you for 
having this hearing today. From a personal perspective as well 
as a policymaker perspective, I don't think there is anything 
more important than our children's health and well being. We 
don't even put a fraction of the funds into it that we should 
in this country. I want to talk about a couple of the myriad 
issues that we are going to talk about this afternoon. First of 
all, as the cochair of the congressional diabetes caucus, I am 
particularly pleased that portions of this hearing will address 
juvenile diabetes, type 1 diabetes. This affects thousands of 
children nationwide. It starts with these children when they 
are very young and stays with them the rest of their lives. 
Diabetes currently affects an estimated 16 million Americans. 
It is the sixth leading cause of death due to disease in the 
United States, and it is the third leading cause in some 
minority groups.
    I believe that in this country, we are at a critical point 
in diabetes research. Congress, as it has so often with other 
diseases, needs to step up to the plate and do the most that it 
can now that a cure is within reach. Last spring, I visited the 
Joslin Diabetes Center at Harvard University which is a world 
leader in diabetes research, and visited with many of our 
leading scientists who are in the cusp of major breakthroughs 
in cell research and diabetes management and so many other 
areas. I believe that this disease could be cured within 10 
years if Congress fully funds the diabetes research outlined in 
the congressionally mandated diabetes research working group. 
The DRWG recommended $827 million for diabetes research, yet 
regrettably under the current budget outlined for the NIH 
Centers for Disease Control Prevention and other agencies, the 
way that we calculate it, diabetes will be lucky to get $500 
million.
    This is certainly a step in the right direction, but we are 
too close to a cure to fail to make a full commitment. Children 
with diatetes or children with other lifelong diseases need a 
special focus. They are not simply small adults. My own child, 
for example, like all children with diabetes, must have two 
injections of insulin each day and a minimum of four blood 
tests per day. Think about doing that for 60 or 70 years of 
your life if you live that long, and it begins to let you know 
simply what living like this is. That is even if you don't get 
complications.
    I believe that Congress has to expand clinical trials to 
children who are often left out of promising new approaches to 
treatments and that the clinical trials need to be properly 
designed for children so that they are not subjected to undue 
risk. This is true not just with diabetes but for all diseases 
in which we use children in clinical trials.
    Let me talk about the other issues some of them that we are 
talking about today as well. The panel discussion on autism, I 
am looking very much forward to and also the discussion on 
poison control centers. I have cosponsored legislation 
introduced by Representative Greenwood on pediatric autism 
research and by Representative Upton on poison control centers. 
Both of these pieces of legislation should be passed this year 
without any delay. I hope this hearing lays the groundwork for 
committee action.
    Briefly, I would like to make the committee aware of 
today's presence of an expert in the field of development and 
behavioral pediatrics, Dr. Randi Hagerman who is from 
Children's Hospital in Denver. She is a leading expert in the 
fragile X syndrome which is currently the leading identifiable 
cause of autism. According to Dr. Hagerman, 90 percent of 
fragile X patients have autism features, 50 percent of 
preschool fragile X children meet autism diagnostic criteria, 
and 6 percent turn out to have fragile X. I think when you look 
at this research, the link between autism and fragile X 
syndrome is undeniable.
    Dr. Hagerman is sitting in the back row of the room today. 
I would have liked to have had her testify at the hearing, but 
I understand time constraints, Mr. Chairman. So instead I would 
like to ask the chairman for unanimous consent to offer her 
written statement in the record, if I may.
    Mr. Bilirakis. Without objection.
    [The prepared statement follows:]
   Statement of Randi J. Hagerman, M.D., Professor of Pediatrics and 
Section Head of Developmental and Behavioral Pediatrics, University of 
  Colorado School of Medicine, Child Development Unit, The Children's 
                                Hospital
    I am Dr. Randi J. Hagerman, a developmental pediatrician at the 
Children's Hospital of Denver, Professor of Pediatrics and Head of the 
Section of Developmental and Behavioral Pediatrics at the University of 
Colorado School of Medicine. I have been involved in Fragile X research 
for the past twenty years, and have written more than one hundred 
scientific papers and three books on the subject. I am a member of the 
Advisory Board of FRAXA Research Foundation and the Board of Directors 
of the National Fragile X Foundation. I have personally evaluated over 
five hundred families with Fragile X syndrome. Thus, I bring a broad 
clinical and research experience to this discussion.
    I am here on behalf of about 100,000 Americans affected with 
Fragile X--and their families, which include approximately 1 million 
carriers--to ask for your help and support for H.R. 1445, which would 
establish centers for research and treatment of the Fragile X.
    There are three main reasons you should support H.R. 1445:
 It is the most common cause of inherited mental retardation 
        and causes a broad range of other problems.
 It is a ``research portal'' for other brain disorders, 
        especially autism.
 It is the leading-edge candidate for a breakthrough in 
        understanding many other diseases, including autism.
THE MOST COMMON CAUSE--AND MORE
    Even though it is relatively unknown by the public, as yet, Fragile 
X is the most common inherited (i.e, ``runs in families'') cause of 
mental retardation. More than that, it also causes a broad range of 
emotional and learning problems even in those carriers who are affected 
but not mentally retarded. Fragile X is the leading form of autism of 
known cause: 90% of Fragile X patients have autistic features, 50% of 
preschool Fragile X children meet autism diagnostic criteria, and 6% of 
all autistic individuals turn out to have fragile X. Fragile X also 
gives rise to anxiety disorders, attention deficit hyperactivity 
disorder, psychosis, obsessive-compulsive disorder, and many other 
problems. One in every 250 women in the general population is a carrier 
for Fragile X and has a 50% chance with each pregnancy of having a 
child affected by Fragile X.
A RESEARCH PORTAL
    Individuals with Fragile X are missing a protein that is critical 
for normal brain growth and development. Specifically, the Fragile X 
protein is involved with forming the proper nerve cell connections that 
occur during learning. When an environmental stimulation occurs, the 
Fragile X protein is the first protein that a brain cell produces to 
enhance the connections between brain cells, thus permitting normal 
development. In the absence of this protein, these changes cannot occur 
in a normal fashion. Thus, Fragile X holds the key to understanding 
both normal and abnormal brain development.
    The Fragile X gene was identified and sequenced in 1991. Since that 
time, it has become clear that the type of mutation found in the 
fragile X gene (FMRI) is similar to that found with more than a dozen 
other neurological disorders, including Huntington's disease, and 
myotonic dystrophy, which is the leading cause of muscular dystrophy in 
adults. Dr. James D. Watson, who received the Nobel Prize for the 
discovery of the DNA Double Helix recently said, ``. . . with the first 
big public payoff from the Human Genome Project being the 1991 cloning 
of FMRI, I want to see this great breakthrough appropriately used . . 
.''
    In other words, Fragile X represents a portal through which we hope 
to view and treat a wide variety of other disorders of brain 
development and function. All children with autism and mental 
retardation of unknown cause should be tested for Fragile X.
A LEADING-EDGE BREAKTHROUGH CANDIDATE
    Fragile X research is on the leading edge in our understanding of 
gene-brain-behavior relationships; it serves as a model for many other 
neurodevelopmental disorders. Moreover, there is real cause for 
optimism in finding an effective treatment. With Fragile X, the coding 
portion of the gene is normal, it is just turned off, so no protein is 
produced from the gene. Thus, we do not need to introduce a new gene; 
we just need to find out how to turn on the silent gene that is already 
present. This breakthrough would lead to a cure.
    Funded treatment and research centers will help to achieve this 
goal because they allow a variety of professionals to work together 
toward the common goal of understanding and treating this disorder. 
Physicians, psychologists, and therapists must work together with 
molecular experts to advance our understanding of clinical-molecular 
correlations, and to develop comprehensive treatment programs. The 
unusual patients detected by clinicians, those who have the gene 
partially active, hold the key for the reactivation of the gene. 
Treatment trials will also require input from both clinicians and basic 
scientists. Collaborative efforts thrive in centers that are 
specifically designed and funded for such interactions.
    Thus far, individual research grants in the field of Fragile X have 
not led to treatment research. In 1988, we published the only 
controlled trial of medication-based treatment for Fragile X, and I 
believed that this trial would be followed by a rush of additional 
research focused on treatment. This has not occurred; no subsequent 
controlled treatment studies have been published. The proposed centers 
would specifically foster the interactions that would lead to such 
trials.
IN SUMMARY . . .
    Fragile X is an important disorder, because it is the most common 
heritable form of mental retardation, and the most common known cause 
of autism. It is a window to a greater understanding of many other 
diseases involving abnormal brain development and function. It is the 
leading candidate for a breakthrough in treatment.
    Your help in establishing funded centers for Fragile X treatment 
and research will allow and encourage scientists and clinicians to 
combine the medical treatments of today with the genetic therapies of 
tomorrow.

    Ms. DeGette. Thank you, Mr. Chairman. Finally at a time of 
relative prosperity in this country, there are some disturbing 
trends in children's health that I hope the committee will 
address in the near future. First and foremost, despite--Mr. 
Chairman, may I have unanimous consent for another minute?
    Mr. Bilirakis. Without objection.
    Ms. DeGette. Thank you. Despite children's health insurance 
as part of the balanced budget act of 1997, the number of 
uninsured children continues to increase and reached 11.1 
million in 1998, according to the U.S. Census Bureau. If we 
were adequately the CHIP program and the Medicaid program in 
this country, Mr. Chairman, we could have had nine of these 11 
million children enrolled in health insurance today. To address 
these and other concerns regarding children's health coverage, 
I introduced H.R. 827, the Improved Maternal and Children's 
Health Coverage Act. This legislation has 112 bipartisan 
cosponsors and although today's hearing is not about health 
insurance coverage, all of these children who have these other 
issues would be well served by being in health insurance. So I 
urge the chairman to hold a hearing on health coverage soon, 
and I would love to see my bill passed. Thank you again for 
holding this hearing, and I yield back.
    Mr. Bilirakis. I thank the gentlelady. Mr. Stupak.
    Mr. Stupak. Thank you, Mr. Chairman. I will be brief. I 
just got off of the airplane from Michigan. There are a couple 
of bills on the floor so I will be bouncing in and out. But I 
look forward to this hearing. I hope we can hear the witnesses 
before I have to go down on the floor and look forward to 
working with you on this legislation.
    Mr. Bilirakis. I thank the gentleman. Mr. Ganske for an 
opening statement.
    Mr. Ganske. Thank you, Mr. Chairman. I am interested in 
hearing the testimony. I yield back.
    Mr. Bilirakis. I appreciate that. Mr. Waxman, now, you are 
really in a spot.
    Mr. Waxman. Thank you, Mr. Chairman. I am pleased you are 
holding this hearing. I am anxious to hear the testimony as 
well. I have to apologize to the witnesses because I also have 
to be in another hearing at the same time, but the record that 
you will make I hope will allow us to move forward on important 
issues dealing with autism, and juvenile diabetes, asthma, and 
other childhood diseases.
    I yield back the balance of my time and look forward to 
hearing the witnesses's testimony.
    Mr. Bilirakis. I thank you. I think that we have heard from 
all members of the subcommittee. Mr. Upton informs us that he 
wants to be here to particularly talk about his poison control 
center legislation, but the date-rape bill is on the floor at 
the same time. He is involved in that. Without objection, his 
opening statement will be made a part of the record.
    And, of course, the opening statement of all members of the 
subcommittee will be made a part of the record without 
objection.
    [Additional statements submitted for the record follows:]
  Prepared Statement of Hon. Fred Upton, a Representative in Congress 
                       from the State of Michigan
    Mr. Chairman, thank you for convening today's hearing on children's 
health issues. Each of these issues is important to me, but two are 
especially close to my heart: preventing and treating accidental 
children's poisoning and reversing the spiraling increase we are seeing 
in childhood asthma, particularly in our inner cities.
    Poisoning is the third most common form of unintentional death in 
the United States. In any given year, there will be between two and 
four million poisonings. Poisoning accounts for 285,000 
hospitalizations, and 13,000 fatalities yearly. The total direct costs 
associated with poisoning total $3 billion annually. That is more than 
we spend on gunshot wounds, burns, or drowning yearly.
    Children are disproportionately affected--sixty percent of 
poisonings involve children less than six. Poison control centers are 
one of our nation's most effective means of reducing this serious child 
health problem, offering both parents and health professionals 
immediate and accurate access to diagnosis and treatment that often 
leads to a reduction in the severity of the poisoning. Almost 75 
percent of calls to the centers can be handled in the home, thereby 
reducing needless emergency and hospital costs. Every dollar spent on 
poison control centers saves seven dollars in potential medical costs 
(per the American Academy of Pediatrics).
    As you are very well aware, Mr. Chairman, many poison centers--the 
front lines in the treatment and prevention of accidental childhood 
poisons--are endangered. I again and especially want to thank you, my 
original cosponsor Ed Towns, and the other members of the Subcommittee 
and full Committee who have cosponsored the legislation I introduced to 
provide these centers with a stable funding base and to create a 
national poison hot line.
    Chronic asthma is a serious and growing health problem confronting 
our nation, and particularly our nation's children. The Centers for 
Disease Control and Prevention reports that 6.4 percent of our 
population report having asthma--a dramatic 75 percent increase over 
the last two decades. Childhood asthma has increased even more 
dramatically--over 160 percent since 1980--and is the most common 
childhood chronic disease. It is particularly prevalent among the urban 
poor, in all likelihood because of lack of access to health care and 
the high number of allergens in the environment. Asthma deaths have 
tripled over the past two decades, despite improvements in clinical 
treatment. In my own state, 5.7 percent of the population, or 542,300 
Michiganders suffer from asthma.
    I wanted to take this opportunity to briefly describe legislation 
Henry Waxman and I have introduced to help us marshal and coordinate 
our resources to much more effectively wage war against this 
significant threat to our nation's health. H.R. 2840, the Children's 
Asthma Relief Act of 1999 creates a $50 million program within the 
Maternal and Child Health Block Grant program to assist communities in 
areas with a high prevalence of childhood asthma and a lack of access 
to medical care to establish treatment centers. In addition to 
providing medical care on site and in various areas of the community 
through ``breath mobiles,'' the centers will also provide education to 
parents, children, health providers and others on recognizing the signs 
and symptoms of asthma, provide medications, and provide training in 
the use of these medications. The centers will also provide other 
services, such as smoking cessation programs and home modifications to 
reduce exposure to allergens.
    In closing, I want to welcome all of our witnesses and to note that 
I especially appreciate Dr. Richard Weisman's willingness to discuss 
childhood poisonings and the vital role that our nation's poison 
control centers play in addressing this serious problem.
                                 ______
                                 
 Prepared Statement of Hon. Tom Bliley, Chairman, Committee on Commerce
    Mr. Chairman, thank you for calling this hearing today. This 
topic--Children's Health: Building a Better Future--is an important one 
that calls out for closer scrutiny and examination. This subcommittee 
is considering a range of issues--each are deserving of our attention. 
First, today we will examine a heart breaking condition--autism. Autism 
is a serious disease. Autism is not rare: it affects 1 in every 500 
children born today and is more prevalent than Down syndrome, childhood 
cancer or cystic fibrosis. It hits children during the first two years 
of life and causes severe impairment in language, cognition and 
communication.
    The next matter before us today is adoption. During my time in 
Congress, I have always focused on adoption policy and I see great 
potential for progress in this important area. I especially believe 
that there is more that we can do to encourage adoption of children 
with special needs. If children born with birth defects are adopted 
early, they stand a far better chance in life than if they go through 
the foster care system.
    Juvenile diabetes and pediatric asthma are maladies that cost 
individuals, families, and society at large dearly. It is important 
that the Members of this subcommittee listen to this testimony and 
discuss possibilities for building for a better future by reducing the 
incidence of these diseases among children. We know we can lessen the 
incidence of child mortality through the use of successful poison 
control methods. We are told that every dollar spent on poison control 
centers saves seven dollars in potential medical costs. Let us examine 
how we can help make these centers even more effective.
    Once again, I applaud this subcommittee for conducting a hearing on 
children's health. We have before us two panels of distinguished guests 
who bring a wide breadth of perspective. I look forward to their 
testimony.

    Mr. Bilirakis. The first panel consists of Ms. Rene Russo, 
board member of the Cure Autism Now group from Los Angeles, 
California, and Ms. Francine Young, registered nurse, from 
Tonawanda, New York.
    Ladies, thank you so very much for taking time away from 
your families and your work to be here. I don't know whether 
Ms. Young furnished us with her testimony, but in any case, the 
point is all of your written testimony is a part of the record 
if we received it. And I will turn the clock on for 5 minutes, 
and hopefully you can get your story across. Obviously if you 
need more time, I will give it to you. Ms. Russo, please 
proceed.

   STATEMENTS OF RENE RUSSO, BOARD MEMBER, CURE AUTISM NOW, 
 ACCOMPANIED BY JONATHON SHESTACK, PRESIDENT, CURE AUTISM NOW; 
                       AND FRANCINE YOUNG

    Ms. Russo. Mr. Chairman, I am terrified. I am so excited.
    Mr. Bilirakis. Please pull the mike closer.
    Ms. Russo. I am terrified. I am excited to be here. I feel 
so glad. There are so many emotions coursing through by body, 
it will be a miracle if I get through it. If I stop to cry, 
that is who I am. I can't help it. I really do care about kids. 
Usually I am on the other side of the panel, the one being 
asked or sometimes guilted into my time and resources. So I 
know how difficult it is for you to make decisions between 
schools and foreign aid and roads and who gets it and who 
doesn't. I said to a few of you, I am thankful that it is your 
job because I couldn't do it. I really couldn't.
    It was very difficult for me to focus on a couple of 
different charities because they are all worthy. They all need 
money. I adopted a little boy this year with CF, that I saw die 
before my eyes. So--oh, boy, here we go. How many minutes do I 
have here? Here we go. I am going to race through it. I will 
collect myself.
    Having said that, there were a few reasons that I really 
chose autism. I met Jon and Portia Iverson. They started Cure 
Autism Now, CAN, several years ago at a lunch and it was at 
that lunch that I learned that their son, Dov, had just been 
diagnosed with autism and they had just started CAN. I knew 
very little about autism but what was amazing to me at that 
lunch were the statistics. I was very curious about them. I 
just wanted to run a couple of them to make it very clear for 
you. Really I am making it simple for myself, but I learned 
that one in every 500 children have this disease or diagnosed 
every year. That is 400,000 people in the United States. It is 
more common than multiple sclerosis, Downs syndrome or cystic 
fibrosis.
    I remember sitting and thinking, I wonder why I haven't 
gotten a letter in the mail to head up a fund raiser if it is 
so prevalent. I hadn't heard of it yet there were so many kids 
that had it. We are not sure if it is a real epidemic or better 
reporting, but we do know that in California, where I am from, 
the Department of Developmental Services reports a 263 percent 
increase in autism in the last 10 years.
    We found out this week that in Florida there has been a 500 
percent increase. That is terrifying to me. It is terrifying 
for the kids that are here and the ones that aren't. I also 
learned at that luncheon that as of 3 years ago, the funding 
was $5 million. That is less than $12 a person, even though 
autism is estimated to cost the country some $13 billion a 
year. I remember sitting there and thinking, wait a minute, if 
this disease is more common than the three big childhood 
diseases, then why is it so underfunded? And Portia and Jon 
explained a little bit of the history of autism. It has been 
ignored to so long because in the 1950's the medical community 
thought that it was bad parenting, trauma, neglectful mothers. 
So obviously the parents were stigmatized and never moved 
forward to organize and the scientists did no research. So a 
generation of children were lost. Gradually they realized 
autism was a medical problem, but they thought it was 
incurable. So scientific knowledge grew all around the disease, 
but it was never applied to autism. When Jon and Portia's son 
was diagnosed with autism, it took 6 months and five different 
specialists to be told there is nothing to be done.
    Damn. Sorry.
    But to hold onto each other and cry and then to move on 
with their lives.
    God. This is by far the hardest thing I have ever done. 
Okay. A mother handed me a note that she wanted me to read to 
you. She said, when our son was diagnosed 3 years ago, we were 
told he had a chronic incurable condition. There was no 
protocol for the treatment, no specialists at all. The doctors 
said all we could do is start educating ourselves, start 
searching. And even today, a parent is being told the awful 
news; and there is nowhere for them to go. So they were told to 
start educating themselves, but there is not a whole lot of 
information out there.
    Jon and Portia went to the NIH at that point, and that is 
when they found how little money was being spent on autism and 
how little information there was on the disease. So what they 
decided to do was go to the neuroscientists themselves--God 
bless parents--and they all said the same thing, that there was 
an unbelievable potential for progress even with the limited 
information and with the best minds and latest technology early 
detection, prevention, better treatment and even a cure was 
possible.
    So they were hopeful. They organized thousands of families. 
They went back to NIH, and unfortunately what they found was 
because of turf battles and scientific competition nobody 
wanted to share what they had. They were back to square one. So 
the families organizing went back into the community and 
started their own brain banks and gene banks so that more 
people could get into the field. That brings us to the present.
    How am I doing, pretty good? I think I have a minute left 
here.
    We are not asking you to tell the NIH how to do science or 
to fund and what not to fund and, but we are asking you to 
create a policy that would take advantage of what is known now, 
to help the scientists work together and help these kids. That 
is the idea behind the Centers for Excellence, the five Centers 
for Excellence, a place where families can go and get a 
diagnosis, some hope, clinical care. Where the very best 
scientists can get together and access those families to 
finding a cure.
    The purpose behind Congressman Greenwood's bill is to 
create a structure that encourages scientists to 
collaboratively share information and treatments because early 
diagnosis for these kids is very important to their future. It 
is the difference between a word and a functioning human being. 
This was the same model that was used to make incredible 
breakthroughs in childhood leukemia and Alzheimers.
    In childhood leukemia, for instance, it went from a 20 
percent to 80 percent survival rate. So we are basically 
stealing that model. Recently the autism community has 
mobilized, and they do feel potential for a breakthrough, but 
we need the money. We need your help. Because these kids, half 
of these kids will never learn to talk or go to school; and 
they will never live independently. Many of them will end up in 
institutions and group homes.
    I can't tell you how many parents don't have the time or 
energy or resources to help these kids. We think that the 
parents are taking care, but they don't know where to go. I 
know every parent's pain is deep and that every disease has its 
own suffering, but in autism the neglect has been so severe and 
the potential for progress so great that it would be tragic to 
do nothing.
    Two years ago, we did a fundraiser that raised $250,000. 
That was a big deal for us. At that time and at the present, 
that is the most money that we have ever raised at one event. 
This is a disease that affects over 400,000 people. I don't 
need to sit here and tell you how painful it is for parents 
because we are all parents, and we can imagine that. But I 
remember one parent saying to me that it was like someone crept 
into her son's second birthday into her house and took her 
baby's mind and personality and left his bewildered body 
behind.
    I love you.
    I think if one in 500 kids were actually being abducted in 
the United States, it would be a national emergency; and I 
think this should be. So thank you so much for your time. God 
bless you all and thank you so much for having me.
    [The prepared statement of Rene Russo follows:]
    Prepared Statement of Rene Russo, Board Member, Cure Autism Now
    Mr. Chairman and Committee Members, I feel blessed to be here 
today. Thank you for this opportunity. I'm usually the one on the other 
side of the panel, the one being asked, sometimes guilted, into giving 
my time and resources to yet another worthy cause. As you know, it's a 
real challenge because they're all heartbreaking and they all need 
money. I don't know how you decide day after day between schools, 
foreign aid, roads--who gets it and who doesn't. God bless you all. I'm 
glad it's your job. I'd end up in the loony bin.
    Having said that, it was a real challenge for me to make a decision 
what to support given limited time and resources.
    I met Jon and Portia several years ago at a luncheon with some 
mutual friends. At that lunch I learned their son had recently been 
diagnosed with autism, and they told me how they had just started Cure 
Autism Now. To be honest, I knew very little about autism. What was 
amazing to me were the statistics, the numbers about the disease.
    Here's what I learned:
    --Every year autism affects 1 in 500 children.
    --That's 400,000 people in the United States.
    --And it's more prevalent than multiple sclerosis or downs syndrome 
or cystic fibrosis.
    I remember sitting there thinking gee, I wonder why I haven't 
gotten a letter in the mail asking me to head a fundraiser for autism 
given it's so prevalent.
    We're not sure if there's a real epidemic or it's better reporting 
but we do know that in California, where I'm from, the Department of 
Developmental Services reports a 263 percent increase in autism in the 
last ten years.
    What was also amazing to me about that luncheon was that the 
funding for autism, as of two years ago, was $5,000,000. That's less 
than 12 dollars a person even though autism is estimated to cost this 
country some 13 billion a year.
    So I'm sitting there thinking wait a minute. If this disease is 
more common than the three big childhood diseases, then why is it so 
underfunded?
    The reason that has been ignored for so long is that in the 1950s, 
when scientists first started describing autism, they blamed it on bad 
parenting, trauma or neglectful mothers.
    Parents were stigmatized so they never organized and serious 
scientists did no research. A generation of children was lost. 
Gradually they realized autism was a medical problem, but they thought 
it was incurable. Scientific knowledge grew all around the disease, but 
were never applied to autism.
    When Jon and Portia's son was diagnosed with autism, it took six 
months and five different specialists to be told there's nothing to be 
done but hold each other and cry and then move on with your lives. That 
was it. No hope. No advice, just ignorance.
    They didn't accept that answer. They explored every therapy, every 
theory--everything you would do for your child. When those didn't work, 
they said there must be something new. But it simply didn't exist.
    Jon and Portia went to the NIH and that's when they found out how 
little was being spent on autism and how little information there was 
on the disease.
    What they decided to do was go to the neuroscientists themselves. 
They all said the same thing. There was an unbelievable potential for 
progress. With the best minds and latest technology--early detection, 
prevention, better treatment and even a cure was possible.
    After organizing thousands of families themselves, Jon and Portia 
went back to the NIH and what they found was that because of turf 
battles and scientific competition, nobody wanted to share what they 
had. They were back to square one.
    Can went out into the community and started their own brain banks 
and gene banks so more people could get into the field.
    Which brings us to the present. We're not asking you to tell the 
NIH how to do science, what to fund and what not. We're asking you to 
create a policy that takes advantage of what is known and use it.
    That is the idea behind centers for excellence--a place that 
families can go to get a diagnosis and clinical care and the very best 
scientists can get access to those families. The purpose behind this 
bill is to create a structure that encourages scientists to work 
collaboratively, sharing information and treatments.
    This was the same model that was used to make incredible 
breakthroughs in childhood leukemia and Alzheimers. In childhood 
leukemia the survival rate went from 20 to 80 percent.
    Recently, the autism community has mobilized. They feel the 
potential to make a major breakthrough is here.
    But they need your help.
    Because half of these kids will never learn to talk or go to 
school. They will never live independently. And many will end up in 
institutions or group homes.
    I know that every parent's pain is deep and that every disease has 
its own suffering, but in autism the neglect has been so severe and the 
potential for progress so great, that it would be tragic to do nothing.
    Two years ago we did a fundraiser that raised $250,000, and that 
is, at present, the most money ever raised at one event for autism--a 
disease that affects over 400,000 people.
    Look, I don't need to sit here and tell you how painful it is for 
parents because we're all parents and we can imagine that, but I 
remember one parent saying that it was like sometime before her son's 
second birthday someone crept into her house and took her baby's mind 
and personality and left his body behind.
    If one in 500 kids were actually being abducted in the United 
States it would be a national emergency, and so should this be.
    Please pass Representatives Chris Smith and Jim Greenwood's bill 
out of this committee and send it on to the house floor this year. 
Please allow these families to have hopes and dreams for their children 
again.
    The potential is there. With your help, it will happen.
    Thank you.

    Mr. Bilirakis. Thank you, Ms. Russo.
    Ms. Young, please proceed.

                  STATEMENT OF FRANCINE YOUNG

    Ms. Young. Thank you, Mr. Chairman and Mr. Brown and all 
other members of the subcommittee for giving me this 
opportunity to talk about autism. Mr. Chairman, I would also 
like to publicly thank my Congressman, Mr. LaFalce, for helping 
me to arrange my appearance here today. Congressman LaFalce 
received a letter from the Autism Society of America last 
Friday supporting my testimony and thanking him for his 
interest in autism. The letter also enclosed from other parents 
across the country to support the increased funding for autism 
research. I hope the letter can be included in the hearing 
record.
    Mr. Bilirakis. Without objection, it will be.
    Ms. Young. I am here----
    Mr. Bilirakis. Please move your mike closer. Do the best 
you can. I know it is tough for you.
    Ms. Young. Thank you. I am here to speak for the children 
because they cannot speak for themselves. I am a registered 
nurse of 18 years, and my son, Douglass Young, Jr., is our 
pride and our joy. As with any parent, your love for your child 
surpasses life itself. My son was born a healthy baby boy 
December 11, 1996. In May of this year, he was diagnosed with 
autism. Being from the medical profession, I insisted on a 
battery of tests to rule out other possiblities before 
accepting that diagnosis.
    As you can imagine, the news was devastating. It was as if 
someone just ripped my heart out of my chest because presently 
there is no cure. At the time of the diagnosis I felt helpless 
and very alone in my sorrow. Like any other mother I would give 
my life gladly in exchange for my child's health. I would climb 
any mountain and go anywhere to save my baby. As a registered 
nurse, I know that at this time autism is a lifelong disability 
where the prognosis is unknown. Small strides have been made 
against autism, but there has been no new treatment in the last 
25 years developed by the medical profession. This is a 
travesty for parents, families and children. Only if you are 
the parent of an autistic child can you understand the pain. I 
talked to other mothers and fathers with autistic children and 
our common saying is we are walking in these shoes, but they 
hurt too much. I would love to take them off. Just because our 
children cannot talk, doesn't mean they have nothing to say. If 
they could, they would be crying, please help me.
    Imagine for a moment your baby not calling you mom or 
daddy. Imagine for another moment your child needing you, but 
unable to call out for help. It is as if they had a stroke. 
They know everything going on around them and can't make their 
feelings known. They can't tell us if they are hungry or have a 
sore throat. They can't express their wants through verbal 
communications. When you call them it is as if they are deaf, 
retreating to a world of their own. They cry sometimes for 
hours on end and they cannot be consoled because they are in 
physical pain brought on by chronic gastrointestinal problems 
and other problems. When you are out in public it is hard to 
explain their peculiar behavior because physically they look 
absolutely normal.
    How many other families and children must feel the pain? My 
5-year-old daughter always asks me, why doesn't Dougie talk; 
why doesn't he play with me? How do you answer those kinds of 
questions? I am scared for my son's future. How will he be 
treated. Will he ever get married or have a family. Those 
answers lie with you because if these bills are passed, we may 
find the cause and help our babies. So that maybe this disorder 
can be a disorder of the past. If this is an outbreak of small 
pox, we will be all over it. But because these children have no 
physical handicaps, we tend to forget them. I love my son, and 
so do all of the parents of autistic children. Please, I beg 
you, help us by passing bills H.R. 274 and H.R. 997.
    Excuse me.
    The Los Angeles Times August 16, 1999, headlines, State 
Reports Epidemic of Autistic Children. Dr. Bernard Rimland of 
the Autism Research Institute in San Diego says we are in the 
middle of an autism epidemic.
    It has already been stated that one in 500 children are 
autistic according to the National Institutes of Health. Recent 
reports in New Jersey are telling of autistic clusters 
affecting 1 in 150 children in California. One child is being 
diagnosed as autistic every 4 hours or 6 children a day. I have 
more, but you can read that later. On October 7, 1999, the 
Miami Herald reported the Florida Department of Education has 
documented a 563 percent increase in autism in the last 10 
years. The U.S. Department of Education has reported an 
increase of autism in every State. There is no such thing as a 
genetic epidemic. We are losing a generation of children. We 
cannot allow this to continue in our great Nation. We need to 
find a cure. We have to know the causes and determine which 
types of autism can be prevented. We have to have the guidance 
of qualified physicians when your child is diagnosed with 
autism. They say sorry, Mrs. Young, but there is no cure, and 
we really don't know how to treat him. You are pretty much on 
your own to see which stone age treatment will work best.
    These children need to have proper medical care as early as 
possible. We need to accelerate our biological and 
immunological research. These children have been ignored for so 
long. Parents are going bankrupt refinancing their homes and 
trying every treatment under the sun for the small chance their 
child might be helped. For every child diagnosed with autism, 
estimates are showing that it will cost $2 million for a 
lifetime of care.
    In closing, I want you to look at my son. Here is a 
picture, my love of my life. This could be your child or your 
grandchild. No one in this room is immune to autism, no one in 
this room. It knows no color, no race, no color and no creed. 
If we continue to ignore this disorder, we will all be mourning 
our children and one day be saying to ourselves, why didn't we 
listen. Why didn't we care.
    Don't let this happen to your child or grandchild for the 
pain is too unbearable. Let's attack it before it grabs another 
baby's life. You are in a position and the only ones that can 
help them. For the children, pass these bills. Please look at 
my baby one more time and don't say no to my son or anyone's 
autistic child. Thank you. Thank you.
    [The prepared statement of Francine Young follows:]
                  Prepared Statement of Francine Young
    Thank you Mr. Chairman and Mr. Brown and other members of the 
subcommittee for giving me this opportunity to talk about autism. I am 
here to speak for the children because they cannot speak for 
themselves.
    I am a registered nurse of 18 years and my son Douglas Young Jr. is 
our pride and our joy. As with any parent: your love for your child 
surpasses life itself.
    My son was born a healthy baby boy Dec. 11, 1996. In May of this 
year he was diagnosed with autism. Being from the medical profession I 
insisted on a battery of tests to rule out all other possibilities 
before accepting that diagnosis.
    As you can imagine: the news was devastating. It was as if my heart 
was just ripped out of my chest. Because presently there is no cure. At 
the time of the diagnosis I felt helpless and very alone in my sorrow. 
And like any other mother I would give my life gladly, in exchange for 
my baby's health. I would climb any mountain or go anywhere to save my 
baby.
    As a registered nurse I know that at this time, autism is a 
lifelong disability, where the prognosis is unknown. Small strides have 
been made against autism. There has been no new treatment in the last 
25 years, developed by the medical profession.
    This is a travesty!! For parents, families, and the children. Only 
if you are the parent of an autistic child can you understand the pain. 
I talked to other mothers and fathers with autistic children: and our 
common saying is: ``We are walking in these shoes . . . but they hurt 
too much. I'd love to take them off.''
    Just because our children cannot talk, doesn't mean they have 
nothing to say. And if they could: they would all be crying: ``please 
help me''!!
    Imagine for a moment your baby not calling you momma or daddy. 
Imagine for another moment, your child needing you, but unable to call 
out for help. It's as if they had a stroke!! But they know everything 
that's going on around them, and can't make their feelings known.
    They can't tell us if they're hungry, or if they have a sore 
throat. They can't express their wants through verbal communication. 
When you call them, it's as if they're deaf. Retreating to a world of 
their own. They cry sometimes, for hours on end, and they cannot be 
consoled. Because they are in physical pain, brought on in part by 
chronic gastro-intestinal problems.
    When you're out in public it's hard to explain their peculiar 
behavior, because physically they look absolutely normal.
    How many more families and children must feel the pain?? My 5 year 
old daughter always asks me: ``momma: why doesn't Dougie talk?? Why 
doesn't he play with me??'' How do you answer those kinds of 
questions?? I am scared for my son's future. How will he be treated?? 
Will he ever get married and have a family?? Those answers lie with 
you. Because if these bills are passed, we may find the cause and help 
our babies, so that maybe this can be a disorder of the past.
    If this was an outbreak of smallpox we would be all over it. But 
because these children have no physical handicaps and look so normal, 
we tend to ignore it. I love my son and so do all parents of autistic 
children. Please, I beg you, help us by passing these bills.
    The Los Angeles Times on August 16, 1999 (headlines): State reports 
epidemic of autistic children. Dr. Bernard Rimlind of the Autism 
Research Institute in San Diego says we are in the middle of an autism 
epidemic. 1 in 500 children are autistic according to the National 
Institute of Health. Recent reports in New Jersey are telling of 
autistic clusters, affecting 1 in 150 children. In California: one 
child is being diagnosed as autistic every 4 hours, or 6 children a 
day.
    In Virginia, a 27 percent increase of autism over the past few 
years has been documented. The Inland Regional Center in California 
reports that 2 counties: San Bernardino and Riverside, are reporting 
150 children, diagnosed with DSM4: which is full blown autism every 
month. The Miami Herald on October 7, 1999 reported that the Florida 
Department of Education has documented a 563 percent increase in autism 
in the last 10 years. The U.S. Department of Education has reported an 
increase of autism in every state. There is no such thing as a genetic 
disease epidemic.
    We are loosing a generation of children.
    We cannot allow this to continue in our great nation. We need to 
find a cure, have to know the causes, and determine which types of 
autism can be prevented. We have to have the guidance of qualified 
physicians. When your child is diagnosed with autism, they say sorry 
Mrs. Young, but there is no cure. And we really don't know how to treat 
him. They have no clue.
    You're pretty much on your own, to see which stone-age treatment 
will work the best. These children need to have proper medical 
treatment as early as possible. We need to accelerate our commitment to 
biological and immunological research.
    These children have been ignored for so long, parents are going 
bankrupt, refinancing their homes, trying every treatment under the 
sun. For that small chance their child might be helped. For every child 
diagnosed with autism, estimates are showing that it will cost 2 
million dollars, for a lifetime of care.
    In closing: here is a picture of my baby son. My love . . . my 
life. This could be your child, or your grandchild. No one is this room 
is immune to autism. It knows no race, no color, no creed. And if we 
continue to ignore this disorder, we will all be mourning our children. 
And one day be saying to ourselves: ``why didn't we listen?? Why didn't 
we care??''
    Don't let this happen to your child or grandchild. For the pain is 
too unbearable. Let's attack it . . . before it robs another baby's 
life. You are in the position, and the only ones, that can help them. 
For the children: pass these bills. Please look at my baby, look long 
and hard, and don't say no to my son. Or anyone else's autistic child.
    Thank you.

    Mr. Bilirakis. Thank you, Ms. Young and Ms. Russo. 
Obviously, the testimony from both of you is very moving. Our 
hearts certainly go out to you, Francine, and our gratitude to 
you, Rene, for caring and for putting your energy and your time 
behind your caring, not just the money but the energy and the 
time which is sometimes even much more important.
    Ms. Russo, can you describe, if you know--if you don't 
know, I would like--CAN, the organization to describe to us the 
effort that they have taken to start their own gene and brain 
banks and how do such banks work and how are they helpful to 
the advancement of clinical understanding and improvement of 
autism.
    Ms. Russo. I do know a little bit about it but I think it 
would be wonderful for Jon, because he is really great----
    Mr. Greenwood. Mr. Chairman, can I ask unanimous consent 
that Mr. Shestack help her with that question?
    Mr. Bilirakis. I guess I have no problem with that. It is 
out of the ordinary, but please do that. Again, you are not 
going to have enough time to go into it with any detail, but I 
would like to ask that you submit that information to us. It 
can be very helpful.
    Mr. Shestack. Thank you, Representative Bilirakis, for the 
opportunity. Because autism research was so behind for so long, 
scientists didn't have the basic tools they needed to make 
progress which was tissue from people, often brains which is 
the real tough subject and also DNA which is blood from multi-
plex families. There wasn't enough to go around and when people 
had it, they didn't share it. So what has happened recently the 
families from the various groups, from NAR, with the brain bank 
and from CAN with the gene bank, have taken these matters into 
their own hands and created these resources with their own 
money that they have raised from families and made this 
available to scientists all around the world. For instance, 
with the gene bank in 1 year the families from CAN contacted 
500 families who had two kids with autism or more. They got to 
these families and took their blood and put it in a repository 
so now everybody can have it. No one has to go through that 
cost or expense to get it. We hope that this will move science 
much faster. What we have been trying to do is prime the pump 
and get it as ready as possible for to you take it over and to 
help us. So that is why we have been funding pilot studies and 
research and doing everything we can to bring scientists in to 
create these resources. And the Internet and modern technology 
has made this possible in ways never before.
    Mr. Bilirakis. How do the brain banks work?
    Mr. Shestack. People from NAAR know more about it, but what 
happens is alerts are sent out to families and to physicians 
and to hospitals all around the Nation. In the event of a 
tragic death of somebody with autism, if the family consents 
and they need know about it in advance, they make sure that 
brain becomes available. For instance, I love my 7-year-old son 
more than anyone could love anyone in the world, but the truth 
is, if he were to die tomorrow, we have worked all these years 
to help him and we would want to make sure that in the horror 
of his death there would be some good that would come of it. So 
we would do everything that we could to make sure that that 
brain would get into the hands of as many scientists as 
possible immediately as possible.
    What we do is we let families all around the Nation know 
about this and know how very important it is. What the 
scientists tell us is what they need is money and time and the 
raw materials to do the work. That often means DNA and tissue. 
Without it, they can't do it. The same--the DNA is much easier 
to get. They just come to the home and get a blood sample. But 
right now, people can do whole genome scans in 6 months. People 
every day pick up your paper and they see another gene 
discovered. Fragile X, a very important finding in red 
syndrome, was made the other day, and this is because large 
collections of DNA were made available to many scientists. This 
is the way that it is going to be done in the future. No group 
is going to be able to hold it back anymore. They are going to 
have to share it with the public and with the world. It is the 
only way to move things fast.
    Mr. Bilirakis. Does CAN have or does any other organization 
have a list, a roster, whatever, if you will, of families with, 
unfortunately, with this problem?
    Mr. Shestack. Sure. All of us have our mailing lists. The 
Autism Society of America, for instance, has a registry. It is 
working on thousands of families that want to participate in 
research. We have a list, it is confidential and anynomyzed of 
500 plus families with more than one child, sometimes two or 
three with autism. So what we are all doing is going out into 
our own communities and saying now there is a real opportunity. 
Ten years ago maybe there wasn't, but now we can solve this. 
And we are trying to organize ourselves and put us in a 
position to best take advantage of these centers of excellence. 
We are cooperating among ourselves and trying to suggest that 
you help set up a system at the NIH for scientists to help as 
well.
    Mr. Bilirakis. Thank you. Mr. Brown is recognized.
    Mr. Brown. Thank you, Mr. Chairman. I don't know 
specifically, this is not addressed to any one of you in 
particular, but any of you that can can answer it. Is there any 
evidence that any racial group or demographic group or any 
demographic group on poverty, gender, anything that you can 
tell us? Certainly there are geographic issues involved, but 
can you comment on any of that?
    Ms. Russo. There may be geographic issues, but, no. That is 
what we don't know. That is why we need the science. It just 
hits across the board.
    Mr. Shestack. That is correct. Autism strikes all racial 
groups, all economic groups, all religions, all creeds, all 
nationalities. The only thing you can say economically is 
taking care of--if you weren't poor to begin with, you will be 
poor.
    Ms. Young. You will become poor.
    Mr. Brown. In the geographic disparities, Ms. Snyder from 
Philadelphia mentioned to me talking before our conference 
outside that in I believe Montgomery County, Pennsylvania, or 
at least in her community inside Montgomery County it was 1 in 
200. Ms. Young, I think that you said the increase was in 500 
percent in California----
    Ms. Young. And it does affect more boys than girls.
    Mr. Brown. We do know that for sure, but we don't really 
know, whether it is chemical plants, pesticides or lawns or 
agricultural, we really don't have any information at all?
    Ms. Young. In New Jersey, it is mostly industrial. They 
also found a cluster in Granite, California, which is a totally 
opposite environment. So if you are looking for pollutants, I 
don't know if you can make a connection because they are 
totally opposite.
    Ms. Russo. I think that is the important part of this bill. 
That is the research that we need.
    Mr. Brown. What age is it? At what age is it most commonly 
diagnosed?
    Ms. Russo. Two, around 2\1/2\.
    Mr. Shestack. Actually, if I could, autism comes on 
sometimes between 18 months and 2 years old. But often a family 
doesn't get diagnosed, particularly if you go to a boy, because 
you go to the doctor and the doctor says boys speak slowly. 
Don't worry about it, he will grow out of it. But they don't--
--
    Mr. Brown. More likely to have it diagnosed later, I 
assume. Are the symptoms always there prior to the age of 3 or 
4?
    Ms. Young. Mine did not have infantile autism. I had a 
developmental pediatrician look at his tapes prior to up until 
about 13 months and there was no signs. He was saying mommy, he 
was saying daddy, he was saying go, up, car. Then everything 
stopped.
    Mr. Brown. Then the development is arrested or reversed?
    Ms. Young. Right. They regress.
    Mr. Brown. Are the major drug companies in this country 
doing any appreciable research or leaving it up to the 
government?
    Mr. Shestack. The drug companies in this country are not 
doing any appreciable research. Until the last several years, 
what the drug companies have done recently is support groups 
like CAN and the national alliance for autism research to help 
them do pilot studies. In that way they have been generous the 
last couple of years, but that is $30,000 or $60,000 a study. 
None of them that I know of have any emphasis on autism yet. As 
you know, the drug companies are not encouraged to do any work 
in pediatric illnesses. We all think that kids get good care 
because sick kids are so sad and so pathetic. But, in fact, the 
opposite is true. The children get the worst care from 
physicians, from the Federal Government, and from the 
pharmaceutical companies because they aren't there----
    Mr. Brown. This society doesn't put many resources into 
their children. We don't pay people well that take care of 
children, we don't seem to have in this society the kind of 
interest that we should in the young. Have you asked the drug 
companies particularly someone, Ms. Russo, with your stature 
and name, to ask the drug companies about--I mean, sending a 
letter to all of the major drug companies asking them to do 
research?
    Ms. Russo. We had that meeting, that discussion last night 
so we are on that front. There are so many things. I am doing 
something right now that I am helping in the way that I can, 
but we had that discussion last night about just that thing, 
that idea.
    Mr. Brown. Thank you. That is all, Mr. Chairman. Thank you.
    Mr. Bilirakis. I thank the gentleman. Mr. Greenwood.
    Mr. Greenwood. Thank you, Mr. Chairman. Thank you very 
much. That was very hard for each of the witnesses I know, and 
we honor you for being here and doing that. I requested to 
double the funding from $30 million to $60 million. Money is 
all relative and numbers are relative, but I just wanted to 
note for the record last year we spent $148 million researching 
obesity. We spent $116 million researching sleep disorders. I 
don't want to hear from those groups because I am not 
suggesting that we decrease either of those lines, but I think 
in just reflecting on the pain that was expressed by the 
witnesses, by Mr. Shestack, and--you can't see behind you, 
ladies, is that everybody else is crying at the same time.
    Just to honor that and to put things in the proper 
perspective, going from $30 million to $60 million is not 
asking a heck of a lot in a budget that is $1.7 trillion a 
year. I also would just like to note a couple of guys in the 
audience. One of them is David Greigo. Is David still here? 
Stand up and wave. How are you doing, buddy? And also--good for 
you. Also John Harding. Are you still here? Stand up and wave, 
John. These are friends of mine from my district. David Greigo 
is the son of Amby Warden and Jerry Greigo, people that I met 
when we all worked in the same case work office. I married the 
lady next door to my office and so did Jerry. And Mrs. Harding 
is from our district.
    I am convinced that we could do this. I am convinced that 
the funding is available. We have a huge surplus. We can afford 
to do this. We are going to do this and the thing that is 
exciting to me is the notion that we are going to have a place, 
five places at least in this country for starters, where every 
parent can take their children and make sure that no stone is 
left unturned. And that is our commitment. I am delighted that 
we are joining this effort with the other measures because I 
think we are going to build some synergy here. I think all of 
the groups who are interested in their piece of this bill will 
become one vast army across the country and see this thing 
through. I thank you for joining us, and I don't need to ask 
you any more questions. Thank you so much for being here.
    Mr. Bilirakis. Ms. DeGette, to inquire.
    Ms. DeGette. Thank you, Mr. Chairman. I want to echo what 
Mr. Greenwood said. Let me put this into a little bit of 
perspective. I just found out earlier this afternoon that the 
defense appropriations bill that we are talking about, the 
newest proposal is about $9 billion over the President's 
request including a whole bunch of experimental fighter planes.
    I am not against defense, we need a strong defense in this 
country. But it seems to me that when you are talking about 
kids who are the future of our country and they are your kids, 
my kids, all of these kids. It is not--I mean, autism--I have 
friends who have autistic kids. As a parent you know what it is 
like. I have friends who have kids who have all kinds of other 
terrible conditions as well. We are going to put $9 billion 
into defense it seems to me when we are all fiscally 
responsible and trying to have a balanced budget and trying not 
to raid Social Security, we have to make choices in this 
country. You can't have everything. It seems to me the thing 
that we want is a healthy generation of kids.
    The other thing that I will say having worked on diabetes 
issues, we are so close in so much of this research. Doctor, I 
know that you can confirm some of this. A lot of the research 
goes across different diseases, it goes across different 
disciplines. So if we can have basic research, basic cell 
research, a lot of times this will help. Also we need as my 
colleague, Mr. Brown just said, we need to beef up 
environmental research with CDC because we don't know if this 
is completely genetic, environmental factor, whatever. Thirty 
million dollars or $247 million or whatever, it is not even one 
fighter plane. This is my view. Ms. Russo, the one thing you 
said that I want to stress that we really need to do is we need 
to collaborate and work together across disciplines and across 
NIH and all other research agencies. That is how we are going 
to solve these problems. Thanks for coming. It is not easy what 
you are doing, but you have a lot allies in this fight on both 
sides of the aisle. Both Republicans and Democrats care a lot 
of about kids' health. These guys know that if they don't pay 
attention to it, they have got me to deal with. I am a mom. So 
thanks for coming. I yield back, Mr. Chairman.
    Mr. Ganske. Thank you, Mr. Chairman, and thanks to the 
panel. It has been a tough day of testimony for you, I am sure.
    I just would ask a general question, since we are looking 
at money for research, do you have any suggestions for avenues 
that ought to be explored or ways in which we ought to be 
looking at funding additional programs?
    Mr. Shestack. The answer is no actually. We would like the 
scientists at NIH to make those most specific suggestions. That 
is not what we are here for today. We are suggesting perhaps 
that they look at it harder and create a policy that is more 
geared toward success. But we would not suggest which avenues 
would be the most promising, because the people at NIH are 
actually very qualified to do that. We need you to give them 
the tools and the push to do it more.
    Mr. Ganske. Sometimes parents of a child with an illness 
become quite expert in reading everything they can about what 
is going on. My sister, for instance, has a little boy with 
Down's syndrome, and she is pretty knowledgeable about that 
disease.
    I wonder, Ms. Young, you are a nurse. When you look through 
literature and reviewing studies, are you seeing any hope?
    Ms. Young. Well, because it is so--because nobody has done 
very much research on it. Back in the 50's, what they used to 
do, we used to institutionalize these children. I am just 
thinking that everybody's immune system is different, and I 
think immunological studies should be done. That is my own 
personal opinion, and biological studies.
    Mr. Shestack. You do make an excellent point. Parents of 
sick children, particularly something like autism where there 
is not that much information, do become instant experts. In 
autism there has been this terrible break between families and 
physicians, because there was misdiagnosis and mistrust for so 
long. One of the things, for instance, that this legislation 
does is it forces these two communities together, because it is 
true, parents do notice things that are not in the literature. 
For instance, if it is gastrointestinal or kids who don't sleep 
or seem allergic, they notice all sorts of things. So one of 
the things that this bill does is force clinicians and parents 
and scientists to have an exchange of information so that they 
can glean this information from the families, because it is 
true, the families are the best observers. But beyond that, we 
feel there are many qualified scientists, and hopefully more 
every day who will go into this field and take it further.
    Mr. Ganske.  Thank you very much.
    Mr. Bilirakis. Mr. Stupak to inquire.
    Mr. Stupak. Thank you, Mr. Chairman. Reviewing your 
testimony, and thank you all for coming, very good testimony, 
you indicated these increases, 563 percent and things like 
this, Ms. Young, I think you had in your testimony. Is it 
better diagnosis, better reporting? Why do we see these big 
increases now?
    Ms. Young. I really don't know. All I know is that every 
time I turn around, I run into a parent who has an autistic 
child. I have been a nurse for 18 years. It was very rare 18 
years ago, and it seems like every time I turn around, not 
because I am a parent of an autistic child, I am running into 
someone with an autistic child under 2 years old. I don't think 
it is better diagnosis. I think something is going on here, and 
something is going on that is causing the rise in autism. It is 
just not diagnosis. There is something going on. We have to 
find what that is going on. Because if it is 1 in 500 now, and 
it was 1 in 10,000 so many years ago, obviously something is 
going on and we have to find out.
    Mr. Green. If the gentleman will yield for 15 seconds, one 
of the important components of this package introduced by Mr. 
Smith is the Center for Disease Control tracking.
    Mr. Stupak. Ms. Young, you also said there is no such thing 
as a genetic disease epidemic. Explain that more. What do you 
mean?
    Ms. Young. If something is genetic, you carry it through 
your genes.
    Mr. Stupak. It is people saying it is a genetic thing?
    Ms. Young. I think part of it is due maybe to genetics, but 
I think something is triggering it, maybe laying there dormant, 
something in the environment, something out there. Something we 
are doing is triggering autism in these children. I am just 
really frightened.
    Mr. Stupak. This big increase you have seen, has it been in 
the last 5 years, 10 years?
    Ms. Young. I would say within the last 10 years, but in the 
last 5 years, I think it has been more dramatic. If you look 
through research, communities all over the country are 
reporting autism, because we are not keeping good statistics. 
California keeps great statistics, but New York you could try--
I tried desperately before I came here to get some actual 
figures, and----
    Mr. Stupak. You mentioned Florida, and I don't take issue 
with your numbers, Florida said 563 percent.
    Ms. Young. Miami Herald.
    Mr. Stupak. Did the health officials in Florida verify that 
number?
    Ms. Young. I read it in the Herald October 7th.
    Mr. Shestack. I can speak about the California statistics. 
We are not saying these are the best scientifically deduced 
epidemiological statistics. They are not. That is why we need 
this bill. However, the Department of Developmental Services in 
California reports 263 percent increase of people just with 
autism. Mind you, there are also people with something called 
Asperger's Pervasive Developmental Disorder, which are on the 
spectrum which have also increased. What we do know is there 
are more people with autism than we ever knew were there 
before. A percentage of this might be due to better reporting, 
but the other numbers of cerebral palsy or mental retardation, 
for instance, did not have a similar increase at all. One would 
expect if there were better reporting of mental disorders in 
children as the stigma was removed, there would be increase 
across the board. This increase has really been restricted to 
autism. It seems to be this way in every State. But the numbers 
are primitive, because they are coming from education 
departments and not from epidemiological centers.
    Mr. Stupak. In the past children with autism, if they were 
not diagnosed as autism, what would be the misdiagnosis?
    Mr. Shestack. Something we often say is autism is where 
Alzheimer's was 15 years ago. Fifteen years ago you might say 
your grandmother was senile, whereas she had a disease called 
Alzheimer's. Twenty years ago people with autism might have 
been called retarded or severely emotionally disturbed. I am 
sure that our institutions are filled with adults who are also 
somebody's children in their thirties, forties, fifties and 
sixties, who have actually what would have been rediagnosed as 
autism. That alone cannot account for these astronomical rises.
    What we are just saying is figure out what it is. Is there 
an environmental cause? Is there a lifestyle? Is there--
whatever it could be, we don't really know. There isn't a big 
clue. The biggest clue is the numbers are rising. That is the 
first thing you have to look up and notice.
    Ms. Young. I am really scared if we don't take care of it 
now. Being a nurse, within the next 10 years, I don't know what 
you are going to see. It might happen to all of you up there, 
your grandchildren, somebody. We have to take care of it now. 
It is too heartbreaking.
    Ms. Russo. I met three people this month who told me their 
child was diagnosed with autism, and one was my nanny, my 
daughter's nanny, who has been with me for 10 years. So it 
really got close to home.
    Mr. Stupak. So with the surplus, instead of tax breaks, we 
should do more research, right?
    Ms. Young. I don't want my taxes back. Find a cure for my 
kids. And I am not rich. I am not rich.
    Mr. Stupak. Most people would agree with you.
    Mr. Bilirakis. The gentleman from Ohio, Mr. Strickland.
    Mr. Strickland. Thank you, Mr. Chairman. I was struck by 
the information that is here regarding the amount of money that 
is currently going into research. Quite frankly, I was 
surprised to see this. I think Dr. Ganske asked a very relevant 
question a few moments ago when he said do you have any ideas 
as to how we can pay for this.
    I think it is a relevant question. But I am not sure you 
are the ones who should be charged about providing an answer. I 
think your responsibility is to bring to us information based 
on your experience and your research, and our responsibility as 
elected representatives of the people is to seek some solution 
to the information that you bring to us.
    So you didn't answer the question, but I would like to try 
to answer the question in part at least.
    Mr. Ganske. Would the gentleman yield? I am sorry, but I 
did not ask that question. I didn't ask how can we pay for 
this.
    Mr. Strickland. I thought I said do you have some ideas as 
to where resources may come from? Am I wrong there?
    Mr. Ganske. Yes, you are wrong. I asked the question do you 
have any idea where we should put the resources in terms of the 
research.
    Mr. Strickland. I am sorry. I misunderstood that. But 
having acknowledged my misunderstanding of what you said, I 
think what I was beginning to say is still relevant.
    We support and pay for what we believe is important, and 
the major responsibility facing us as representatives of the 
people is to set priorities, and we constantly have to choose 
between or among things that are very important, terribly 
important, and I think Representative DeGette was right when 
she said that there is a coming together, I believe, in this 
Congress of those of us in both political parties in 
recognizing that medical research is something that we all 
should be supporting.
    But I think what I am hearing from you today is that even 
those of us who support medical research need to be more 
sensitized to where those research dollars are going, and that 
children, and this particular disease, may be shortchanged.
    I would like for you to share with me how you feel about 
that conclusion, and if you think that is something that those 
of us in Congress should be sensitized to.
    Ms. Young. I just want to say when my son was diagnosed 
with autism, nobody knew anything. I had to kind of guess at 
treatment. We have no real specialists. I can't take my son, 
like, to a normal--like they would treat my 5-year-old girl. 
There are all these ideas out there, but there is no specific 
treatments. And let me tell you something, when you don't have 
a physician you can take them to that understands the disease, 
it is just like they have a texture and sensory thing. Like my 
son doesn't eat because he doesn't like the texture of 
something, and I tell my doctors, well, he will eat when he 
wants to, it is just real hard.
    My son on Friday, Friday I had strep throat and I called my 
doctor and she said why don't you come in, we will check that 
you have it. My son never had a temperature. When I took him 
in, I went in and I took him with me, they looked in his throat 
and he was loaded with strep and he couldn't tell me. My son 
could have died from strep. Strep will kill you if it goes 
undiagnosed. It is not just a life-long disability; these 
children can also die by not being diagnosed because they can't 
tell you.
    Mr. Strickland. I think I am somewhat aware of the burden 
that you experience because being a psychologist, I am aware 
that early on autism was most often blamed on the interaction 
between the child and the mother, of the child and the parent, 
and we were so ignorant, and thankfully, at least in that 
sense, we are better informed than we were. But I want to thank 
you for sharing your pain with us, because people like you put 
a human face on these circumstances, and I think it makes all 
of us not only better informed, but better people as we 
interact with those of you who are willing to share your 
stories with us.
    Thank you.
    Mr. Bilirakis. Would the gentleman yield?
    Mr. Strickland. Yes, sir.
    Mr. Bilirakis. The gentleman's time is up. The Chair will 
use his prerogative. There is no cure. How much benefit is 
there to realizing or diagnosing it early on?
    Mr. Shestack. We say something, we say half of all people 
with autism will never learn to talk and will never live 
independently, but half of them very well might and maybe even 
more than that. And the absolute key factor of that is 
discovering that your child has autism as early as possible and 
getting into early intervention, which might mean speech 
therapy or occupational therapy.
    It is not the new magic bullet, it is not today's latest 
cure. It is therapies we all know. But if you apply them very 
aggressively to children with autism, it can make a tremendous 
difference between a child who can speak and tell you when he 
has a tummy ache or a toothache, or a child who never can and 
grows increasingly frustrated.
    So this aspect of early diagnosis is critical just for 
taking care of the people who we have now. Of course, the other 
thing that is important to know about this bill and the 
scientists we have spoken to today about this now say the 
research we fund today is going to be the treatments of 
tomorrow. And without that funding, we have nothing, and we are 
living the way we have lived for the past 50 years with this 
disease. These bills both really strongly address this and will 
teach pediatricians all around the country how to catch autism, 
because any one of us could walk into a preschool and spend 20 
minutes and say that is the kid that has autism. We know how. 
When we see it, we know. But pediatricians need to be trained, 
and it is easy training to do.
    Mr. Bilirakis. I am sorry.
    Ms. Russo. Even in the schools, I know when my daughter was 
checked for scoliosis, it is very simple. That would be 
something else, that the bill would help to just educate 
people, teachers, parents, early education. My nanny's son 
really benefited from early intervention.
    Ms. Young. And my son is doing much better.
    Mr. Bilirakis. That was the point I thought, with the media 
being here and Ms. Russo responsible for it for the most part, 
I think that is something, you know, we want to try to find a 
cause, we want to try to find a cure, do all of these things, 
but education and informing, which I don't know, and prevention 
obviously, but we don't know really what causes it.
    Mr. Shestack. There are things we can do now if kids get 
caught early.
    Ms. Young. And there are a lot of States that don't help 
parents. I am lucky to live in New York and they help me with 
the ABA that my son gets, applied behavioral analysis. I talked 
to mothers all over the country, refinancing their homes, 
getting third mortgages, losing their homes because they need 
to get intensive therapy for their children.
    Mr. Bilirakis. Mr. Greenwood.
    Mr. Greenwood. This last point really needs to be stressed, 
because it hasn't been brought up in the hearing. The $6 
million that goes for physician education is critical. Parent 
after parent has said to me, I took him to the pediatrician, I 
said there was something wrong with the kid, the pediatrician 
said wait, it will go away, it didn't. We lost a year, 2 years, 
3 years, before we had any kind of opportunity to do adaptive 
work with these children. We want the doctors to pick up on 
this right away and then get the kids the help that they need. 
It makes a lifetime of difference.
    Mr. Bilirakis. Somebody used Alzheimer's as an example. You 
are right, just 15 or 20 years ago, they couldn't----
    Ms. Young. It was senile dementia.
    Mr. Brown. If I could ask for 60 seconds?
    Mr. Bilirakis. Without objection.
    Mr. Brown. Thanks to all three of you. I appreciate Mr. 
Greenwood's comments. He is exactly right. It begs the question 
of the fact there are 45 million people in this country that 
have no health coverage, that this Congress seems not to 
address that. We should double the NIH budget, we should take 
care of the things that Mr. Strickland and Ms. DeGette and 
others have said we should, but even as we move toward a cure 
and move toward earlier intervention and diagnosis and all that 
we can do in that, if we don't cover the 40 million, in some 
sense at least you all now know what to do to makes things a 
tiny bit better, but so many don't have health care coverage 
don't. This Congress needs surely to move on that as 
inexorably, if you will, as we do on NIH funding.
    Mr. Bilirakis. We can excuse this panel. John, it is 
important I think that you share with us what CAN is doing, the 
bank that we talked about, and any other things that you feel 
might be significant to share with us here, because it may 
sound like we know a lot about this disease and others, but we 
don't. So we need your help.
    Ms. Young. Thank you very much.
    Ms. Russo. Thank you very much.
    Mr. Shestack. Thank you very much.
    Mr. Bilirakis. The second panel consists of Mr. Wes Mahr, 
accompanied by Ms. Mackenzie Mahr, on behalf of the Juvenile 
Diabetes Foundation International, please come forward; Mr. 
Bill Pierce, National Council for Adoption; Dr. Meyer Kattan, 
Department of Pediatrics, Mount Sinai Hospital; and Dr. Richard 
Weisman, Department of Pediatrics, University of Miami School 
of Medicine, on behalf of the American Association of Poison 
Control Centers.
    Welcome. Your written statement is made a part of the 
record. I will turn the clock on 5 minutes and hopefully you 
can sort of compliment, if you will, or supplement your written 
statement. Thanks so much for your patience. We are running 
behind, but that is nothing new up here. We are very fortunate 
so far, we haven't been called for a vote. Possibly maybe we 
can finish up before that happens.
    Mr. Mahr, you and Mackenzie kick it off for us. Take your 
time. Use the mike.

 STATEMENTS OF WESLEY MAHR, ACCOMPANIED BY MACKENZIE MAHR, ON 
 BEHALF OF JUVENILE DIABETES FOUNDATION INTERNATIONAL; WILLIAM 
PIERCE, NATIONAL COUNCIL FOR ADOPTION; MEYER KATTAN, DEPARTMENT 
  OF PEDIATRICS, MT. SINAI HOSPITAL; AND RICHARD S. WEISMAN, 
    DEPARTMENT OF PEDIATRICS, UNIVERSITY OF MIAMI SCHOOL OF 
 MEDICINE, ON BEHALF OF AMERICAN ASSOCIATION OF POISON CONTROL 
                            CENTERS

    Ms. Mahr. Hi. My name is Mackenzie Mahr. I am 7 years old, 
and I have had diabetes for 1\1/2\ years. I don't like having 
diabetes because I have to test my blood sugar at least four 
times a day and give myself insulin shots twice a day. The 
finger pricks make my fingers very sore and the shots bruise my 
body and hurt a lot. I have to watch everything I eat and get 
regular exercise to stay healthy, but even doing all the right 
things, I still sometimes have very high and very low blood 
sugars.
    Sometimes I just feel sad and angry. Diabetes is not fun 
and I can't take a vacation from it. My diabetes is a 24-hour, 
7 days a week, no-break disease. Diabetes is very scary because 
I don't know what the future holds for me. I feel that I am 
doing my part to help people understand what a bad disease 
diabetes is.
    I spoke at two Juvenile Diabetes Foundation lunches to kick 
off the Baltimore area walks to cure diabetes. I filmed a TV 
commercial about diabetes, and my family and I raised over 
$3,000 for the JDF to find a cure for diabetes. This summer I 
participated in the JDF children's Congress in Washington, DC. 
There were nearly 100 kids like me from all 50 States who asked 
you for money for research and to help and to promise to 
remember all the children with diabetes. We need your help to 
find a cure for diabetes. I promise that I will take care of 
myself while I wait for a cure. I hope that you can do your 
part to help me and my friends.
    Thank you.
    Mr. Bilirakis. Thank you. Please proceed, lieutenant.
    Mr. Mahr. Thank you, Mr. Chairman. It is my privilege to 
testify before you today and the committee. I would just like 
to pick up on a parent's perspective to add to what Mackenzie 
said. On March 9th, 1998, we received the devastating news that 
our child had been diagnosed with Type 1, or juvenile, 
diabetes. After a grueling 3-day crash course on how to care 
for a child with diabetes, we were sent home to begin our new 
life. Our new life with diabetes began officially that 
following Thursday morning when we had to give our daughter the 
first of many insulin shots. The process of just giving her one 
injection lasted over 90 minutes, with many tears and 
heartbreak.
    The next 2 weeks left us emotionally distraught and 
physically drained. Our fears were never ending. Every night we 
put our daughter to bed we were worried she would suffer from 
low blood sugar and never wake up. A year and a half later our 
fears have not diminished.
    Our days now are consumed by a strict routine. Mackenzie 
wakes at 7:30 a.m., she tests her blood sugar and gives herself 
an insulin injection. She then eats a breakfast that has been 
carefully adjusted to meet her body's needs. At 9:30 a.m. She 
eats a snack. At 11:30 a.m. She again tests her blood sugar and 
she eats lunch. At 1:30 p.m., another snack. At 3:30 she 
arrives home from school, she tests her blood sugar and she has 
a snack. At 5:30 p.m. She tests her blood sugar and gives 
herself another insulin injection and again eats a meal that is 
appropriate for her blood sugar level. At 8:30 p.m. She tests 
her blood sugar, and she eats a snack, and it is bedtime. The 
next day she gets to do it all over again.
    In addition to this, we will occasionally have to awake her 
in the middle of the night to test her blood sugar, just for 
peace of mind.
    What I have just described is the best case scenario for a 
normal day. If Mackenzie is ill or has a day of activity, her 
whole insulin and testing schedule can be completely turned 
inside out. As parents, our entire day is focused, although not 
always successfully, on trying to maintain a normal blood 
glucose level for Mackenzie. Insulin, although it is a 
wonderful life sustaining drug, is not a cure. Low blood sugar 
can affect Mackenzie's ability to learn in school and can lead 
to seizures or unconsciousness.
    As you are aware, high blood sugar can result in 
devastating consequences, including blindness, amputations, 
kidney failure, heart disease and stroke. Mackenzie's future 
will remain uncertain unless a cure is found.
    As a congressional employee for almost 15 years, I have 
observed Congress firsthand tackle a national problem with 
great resolve. I simply ask that you do the same to help 
Mackenzie and the tens of millions of Americans who have 
diabetes or a loved one affected by the disease. Please provide 
the research funds necessary to support the Diabetes Research 
Working Group report that has identified hundreds of diabetes 
research opportunities that remain unfunded solely because of a 
lack of money. Also I ask that you add to any children's health 
legislation the specific juvenile diabetes initiative submitted 
to you by the Juvenile Diabetes Foundation.
    With your leadership, Mr. Chairman, and the dedicated work 
of the Congressional Diabetes Caucus, co-chaired by 
Representative DeGette, I know that we will find a cure.
    Thank you.
    [The prepared statement of Mackenzie and Wesley Mahr 
follows:]
                  Prepared Statement of Mackenzie Mahr
    Hi. My name is Mackenzie Mahr. I am 7 years old, and I have had 
diabetes for a year and a half. I don't like having diabetes. It has 
affected my whole life. I have to test my blood sugar at least four 
times a day and I give myself insulin shots twice a day. The finger 
pricks make my fingers very sore and the shots bruise my body and hurt 
a lot. I have to watch everything I eat and get regular exercise to 
stay healthy. But even doing all the right things, many times my blood 
sugars swing from very high to very low.
    Sometimes I just feel sad and angry. Diabetes is not fun and I 
can't take a vacation from it. My diabetes is a 24 hour, 7 days a week, 
no-break disease. Diabetes is very scary and I don't know what the 
future will hold for me. I feel that I am doing my part to help people 
understand what a bad disease diabetes is.
    I spoke at two Juvenile Diabetes Foundation lunches to kick off the 
Baltimore-area Walk to Cure Diabetes. I filmed a TV commercial about 
diabetes. And my family and I raised over $3000 at several JDF Walks 
this year to help find a cure for diabetes. I participated this summer 
in the JDF Children's Congress in Washington, DC. There were nearly one 
hundred kids with diabetes, like me, from all 50 states who asked you 
for money for research and to promise to remember all the children with 
diabetes. We need your help to find a cure for diabetes. I am doing the 
best I can to take care of myself while I wait for a cure. I hope that 
you all will now do your part.
    Thank you.
 Prepared Statement of Wesley Mahr on Behalf of the Juvenile Diabetes 
                        Foundation International
    On March 9, 1998, we received the devastating news that our child 
had been diagnosed with Type 1, or juvenile, diabetes.
    After a grueling three-day crash course on how to care for a child 
with diabetes, we were sent home to begin our new life. Our new life 
with diabetes began officially that Thursday morning when we had to 
give our daughter the first of many insulin shots. The process of just 
giving her one injection lasted over 90 minutes with many tears and 
heartbreak. The next two weeks left us emotionally distraught and 
physically drained. Our fears were never ending. Every night we'd put 
our daughter to sleep, we'd worry if she would suffer from low blood 
sugar and never wake up. A year and a half later our fears have not 
diminished.
    Our days now are consumed by a strict routine:

7:30 AM: Mackenzie wakes and tests her blood sugar and injects her 
        insulin. She then eats a breakfast that has been carefully 
        adjusted to meet her body's needs.
9:30 AM: She eats a snack
11:30 AM: She again tests her blood sugar and eats lunch
1:30 PM: She eats another snack
3:30 PM: She tests her blood sugar and has a snack
5:30 PM: She tests her blood sugar and receives an insulin injection 
        and again eats a meal that is appropriate to her blood sugar 
        level.
8:30 PM: She tests her blood sugar, eats a snack, and goes to bed. The 
        next day she gets to start all over again.
Middle of the night: We sometimes need to wake her up to test her blood 
        sugar
    What I have just described is the best case scenario for a normal 
day. If Mackenzie is ill or has a soccer game, her whole insulin and 
testing schedule can completely be turned inside out.
    As parents our entire day is focused on trying, not always 
successfully, to maintain a normal blood glucose level for MacKenzie. 
Insulin itself is not a cure. Low blood sugar can affect MacKenzie's 
ability to learn in school and can lead to seizures or unconsciousness. 
High blood sugar can result in devastating consequences, including 
blindness, amputations, kidney failure, heart disease and stroke. 
Mackenzie's future will remain uncertain unless a cure is found.
    As a Lieutenant in the Capitol Hill police and a member of the 
force for 15 years, I have observed first-hand Congress tackle a 
national problem with resolve. I simply ask that you do the same to 
help Mackenzie and the tens of millions of Americans who have diabetes 
or have a loved one affected by the disease. Please provide the 
research funds necessary to support the Diabetes Research Working Group 
report that identified hundreds of diabetes research opportunities nut 
funded solely because of lack of money. Also, I ask that you add to any 
children's health legislation the specific juvenile diabetes 
initiatives submitted to you by the JDF.
    With your leadership, Mr. Chairman, and the dedicated work of the 
Congressional Diabetes Caucus, co-chaired by Rep. DeGette, I know that 
we will find a cure.
    Thank you.

    Mr. Bilirakis. Thank you very much, sir. I know that was so 
tough on you.
    Mr. Pierce.

                   STATEMENT OF WILLIAM PIERCE

    Mr. Pierce. Chairman Bilirakis and members of the 
subcommittee, thank you for inviting the National Council for 
Adoption to present testimony today.
    My name is Bill Pierce, and I am the president of the 
council.
    The National Council for Adoption is a national not-for-
profit organization founded in 1980 to promote and defend 
adoption and to work on behalf of a wide range of adoption-
related issues. Of particular relevance to this hearing is our 
work with children with special needs, those children, 
especially those with developmental disabilities, who are most 
likely to end up in the public child welfare system and who are 
candidates for adoption from foster care.
    It is the prevention aspect of this picture that I will be 
focusing on in my oral testimony. We believe that if the 
Congress takes steps that result in the improvement of 
children's health, fewer children will enter the system.
    We are also of the opinion that if Congress ensures that 
better counseling is provided to pregnant women who may be told 
that they are pregnant with a child likely to have 
developmental disabilities, that more of these women will be 
comfortable in either choosing to parent their challenged 
children, or will plan adoption for those children without the 
children ever needing to pass through the expensive and slow-
moving foster care system.
    I am here today to encourage the subcommittee to take steps 
that would have the following results: Provide better data 
about the incidence and types of disabilities characterizing 
children in out-of-home care in the public sector, especially 
in the public child welfare system. I might add parenthetically 
that the testimony that we have heard in our first panel about 
the lack of data about children that are affected with autism 
is the kind of epidemiological data that can be picked up by 
better reporting from the public foster care system as well.
    We need reports on the extent to which counseling is 
provided to pregnant women who are encountered by professionals 
who could offer information and education about the realistic 
challenges that parents of children with disabilities face and 
the types of supportive services available to help those 
parents cope with these challenges, ranging from early prenatal 
education to prenatal tests, such as sophisticated imaging 
technologies, including ultrasound, to fetal surgery, to 
adoption planning for their children with special needs.
    We also need to stimulate additional research into ways 
fetal surgery can produce better results for children diagnosed 
with conditions that may be ameliorated in utero.
    The reasons for our concerns are several. HHS's web site 
reports that 110,000 children in the public foster care 
children have adoption as their goal. Of the percentage of 
children available for adoption, half have developmental 
disabilities. An unknown number of the children in out-of-home 
arrangements came into care directly or indirectly as a result 
of their developmental disabilities or health conditions. Some 
presented such challenges and the challenges are the kinds you 
have been hearing about today, that their biological parents 
could not cope and voluntarily relinquished them.
    Others, perhaps the vast majority, were removed 
involuntarily from the custody of their biological parents 
because of neglect and abuse. Within that context it is not 
known what precise role substance abuse plays as opposed to the 
presenting problems of the parents themselves.
    Whatever the complex of causes, the Nation faces a daunting 
human and fiscal crisis, whether one considers the total 
universe of more than half a million children in substitute 
care or the still enormous 110,000 children identified as 
needing adoptive families.
    Early identification of children who may eventually enter 
the system by providing diagnosis and treatment to women with 
high risk pregnancies could reduce the numbers of children born 
with developmental disabilities and other health problems. 
Reducing those numbers should result in fewer children entering 
the system.
    Combining early counseling for biological mothers, fathers 
and other kin with early services for children, should result 
in better planning for the children. More will be able to make 
informed choices about parenting, and those who are less likely 
to be successful parents will make adoption plans earlier and 
without the necessity of expending the time, resources and 
human suffering involved in most involuntarily terminations of 
parental rights.
    It is far easier to find families for children who are 
younger and who have spent a shorter time in the foster care 
system, so introducing these measures should not only decrease 
the pool of children in care, but increase the percentage in 
care who find adoptive families. These changes, taken together, 
should have a substantial impact in reducing the numbers of 
children and ultimately adults who remain in long term or 
permanent care, funded at least in part by Federal programs.
    We respectfully urge the subcommittee as it looks at ways 
to improve children's health and thereby build a better future, 
to provide more Federal involvement for funding of fetal 
research and surgery, to require HHS and other Federal agencies 
to provide more detailed data about disabilities of children in 
out-of-home care and the relationship of disabilities to 
termination of parental rights and adoption, to provide more 
supportive services to women with high risk pregnancies, 
including prenatal tests such as ultrasound and counseling 
aimed at increasing adoption awareness.
    Thank you.
    [The prepared statement of William Pierce follows:]
   Prepared Statement of William Pierce, President and CEO, National 
                          Council For Adoption
    Chairman Bilirakis and other Members of the Subcommittee, thank you 
for inviting the National Council For Adoption, Inc., to present 
testimony today. My name is William Pierce and I am President and CEO 
of the National Council For Adoption.
    The National Council For Adoption is a national, not-for-profit 
organization founded in 1980 to promote and defend adoption and to work 
on behalf of a wide range of adoption-related issues. We do not 
currently receive any federal grants or contracts, including subgrants 
or subcontracts.
    Of particular relevance to this hearing is our work with children 
with special needs, those children--especially those with developmental 
disabilities--who are most likely to end up in the public child welfare 
system and who are candidates for adoption from foster care. Our 
organization spent two years conducting a foundation-funded study of 
foster care and published a comprehensive report listing some of the 
steps the federal and state governments could take to improve the 
situation through prevention and provision of services. Many of the 
suggestions made in that report were incorporated in the Adoption and 
Safe Families Act passed by the Congress and signed into law in 1997.
    But much more needs to be done in respect to preventing children 
from entering foster care or moving children more quickly from foster 
care to permanent, adoptive families. And it is the prevention aspect 
of this picture that I will be focusing on in my testimony. We believe 
that if the Congress takes steps that result in the improvement of 
children's health, fewer children will enter the system. We also are of 
the opinion that if Congress ensures that better counseling is provided 
to pregnant women who may be told that they are pregnant with a child 
likely to have developmental disabilities that more of these women will 
be comfortable in either choosing to parent their challenged children 
or will plan adoption for those children without the children ever 
needing to pass through the expensive and often slow-moving foster care 
system.
    We also believe that there is an excellent case example of the 
positive role that can be played by health care researchers, an example 
which should encourage the Congress to move forward assertively. That 
example is the research done at NIH on the use of AZT to reduce 
perinatal transmission of the HIV/AIDS virus to babies. Part of that 
example also is the necessity to mount an aggressive campaign of public 
health education to overcome well-meaning resistance to a tested 
medical intervention. Our AIDS Orphan Adoption Project has played a 
modest role in advancing public policy in respect to children and 
adults living with HIV/AIDS.
    We also are involved in many other activities, including: 1) 
operating the National Adoption Hotline and an International Adoption 
Information Clearinghouse; 2) promoting adoption for all children 
through legislation and media efforts such as those focusing on the 
elimination of race and ethnicity as a factor in placing children in 
foster care or adoption; 3) working to improve tax fairness and a full 
range of adoption benefits so that more families may be able to adopt; 
4) encouraging ethical, sound and responsive adoption practices by all 
those who provide adoption service and maternity homes (we have both 
adoption agencies and adoption attorneys in our membership); 5) 
offering facts and guidance to the media so that adoption is accurately 
portrayed; 6) supporting privacy and the promises of confidentiality 
made to people involved in adoption; 7) protecting the security of 
children and others involved in adoption by filing friend-of-the-court 
briefs; 8) doing basic policy research; 9) conducting broad-based 
public education efforts through a publications and conference program.
    I am here today to encourage the Subcommittee to take steps that 
would have the following results:

1) provide better data about the incidence and types of disabilities 
        characterizing children in out-of-home care in the public 
        sector, especially in the public child welfare system;
2) report on the extent to which counseling is provided to pregnant 
        women who are encountered by professionals who could offer 
        information and education about the realistic challenges 
        parents of children with disabilities face and the types of 
        supportive services available to help those parents cope with 
        these challenges, ranging from early prenatal education to 
        prenatal tests such as sophisticated imaging technologies 
        including ultrasound, to fetal surgery to adoption planning for 
        their children with special needs;
3) stimulate additional research into ways fetal surgery can produce 
        better results for children diagnosed with conditions that may 
        be ameliorated in utero.
    In our view, these are some of the solutions to these problems.
    First, our organization is keenly aware of the potential positive 
impact of medical interventions based on sound research. No more 
dramatic example comes to mind than the progress made in recent years 
in preventing transmission of HIV/AIDS from mother to child. If one 
refers to major types of developmental disabilities on the web site of 
the National Adoption Information Clearinghouse maintained by the U.S. 
Department of Health and Human Services (HHS), one finds seven 
different categories listed, including AIDS. In the National Council 
For Adoption's AIDS Orphan Adoption Project, we publicize the fact that 
a 1994 National Institutes of Health study found that giving the drug 
zidovudine (also called AZT) to an HIV-positive pregnant woman and to 
the baby at birth reduced by two-thirds the risk of transmission. Eight 
percent of the babies born to women who were treated became infected 
compared to 25 percent among babies born to untreated women. Dramatic 
improvements in the life span of adults living with HIV/AIDS have also 
been noted. The impact of these improvements has meant many fewer 
children orphaned by HIV/AIDS and ending up in the foster care system, 
the child welfare system or otherwise in need of assistance from the 
public human services systems. Similar, if less dramatic, improvements 
can be made for other categories of developmental disabilities, we 
believe.
    The reasons for our concerns are several.
--HHS' web site reports that 110,000 children in the public foster care 
        system have adoption as their goal. (NAIC, oddly, puts the 
        number at less than half, 40-50,000.)
--NAIC estimates that of the percentage of children available for 
        adoption, half have developmental disabilities.
--As of 1994, nearly 20 percent of the total children in out-of-home 
        substitute care had one or more disabilities: the Voluntary 
        Cooperative Information System (formerly administered by the 
        American Public Human Services Association with funding from 
        HHS) put the national estimate at 83,671 of 465,820 for Fiscal 
        Year 1994, the last year for which data are available.
--An unknown number of the children in out-of-home arrangements came 
        into care directly or indirectly as a result of their 
        developmental disabilities or health conditions. Some presented 
        such challenges that their biological parents could not cope 
        and voluntarily relinquished them. Others, perhaps the vast 
        majority, were removed involuntarily from the custody of their 
        biological parents because of neglect or abuse. Within that 
        context, it is not known what precise role substance abuse 
        plays as opposed to the presenting problems of the parents 
        themselves. Whatever the complex of causes, the Nation faces a 
        daunting human and fiscal crisis whether one considers the 
        total universe of more than half a million children in 
        substitute care or the still-enormous 110,000 children 
        identified as needing adoptive families.
--Early identification of children who may eventually enter the system 
        by providing diagnosis and treatment to women with high-risk 
        pregnancies could reduce the numbers of children born with 
        developmental disabilities and other health problems. Reducing 
        those numbers should result in fewer children entering the 
        system.
--Combining early counseling for biological mothers, fathers and other 
        kin with early services for children should result in better 
        planning for the children: more will be able to make informed 
        choices about parenting and those who are less likely to be 
        successful parents will make adoption plans earlier and without 
        the necessity of expending the time, resources and human 
        suffering involved in most involuntary terminations of parental 
        rights.
--It is far easier to find families for children who are younger and 
        who have spent a shorter time in the foster care system, so 
        introducing these measure should not only decrease the pool of 
        children in care but increase the percentage in care who find 
        adoptive families.
--These changes, taken together, should have a substantial impact in 
        reducing the numbers of children--and ultimately adults--who 
        remain in long-term or permanent care, funded at least in part 
        by federal programs.
    My area of expertise is not medicine, but I would like to just 
briefly summarize the highly encouraging progress made in fetal 
research and surgery as part of my call for more federal involvement in 
this area. Our view is that this involvement will lead to a more 
enhanced quality of life for children at risk while simultaneously 
reducing the ultimate net cost of caring for these individuals.
    In 1973, according to the March of Dimes, the first successful in 
utero treatment took place. (By way of disclosure, I should mention 
that in 1960-61 I was employed by the March of Dimes as a State 
Representative and had Western Iowa as my responsibility.)
    In 1989, the first case of congenital diaphragmatic hernia (CDH) 
was corrected prenatally. CDH is said to occur between 1 in 2,000 to 1 
in 5,000 births. The mortality for fetuses and neonates diagnosed with 
CDH is high, ranging between 40--100 percent .
    In the November 21, 1998 Lancet a team from Children's Hospital in 
Philadelphia reported their successful open fetal approach to spina 
bifida repair, which has now become the standard for this procedure. 
Presently, several dozen such surgeries have been performed by a team 
at Vanderbilt University Hospital. Spina bifida is said to occur in 1 
of every 2,000 births.
    Fetal surgery has also been successful in cases which are not life-
threatening, such as amniotic band syndrome, as well as in more serious 
conditions, such as in correcting heart conditions.
    At this point, let me speak about two specific examples relating to 
the health of children and how a different outcome might have resulted. 
In both instances, there was a recommendation for termination but 
counseling was provided so that alternatives such as parenting or 
adoption could be considered.
    In the first instance, provided to me by Susan Dillon, a Milwaukee 
woman who, with her husband, is part of an ad hoc support group for 
parents of children with Down Syndrome. Mrs. Dillon works closely with 
Janet Marchese, the New York volunteer who heads A K.I.D.S. Exchange, 
an adoption exchange which specializes in counseling parents expecting 
children with Down Syndrome and which maintains a large waiting list of 
couples who wish to adopt children born with Down Syndrome. The case 
involved a married couple who were told, after amniocentesis, that the 
fetus had Down Syndrome.
    The mother reports that she was told ``this is going to ruin your 
marriage,'' ``your family will be devastated,'' and ``the grandparents 
and other relatives will not be supportive.'' The woman reports that 
she was counseled by a clinical nurse specialist, but the adoption 
option was never brought up. The only choices were ``continue the 
pregnancy (with the assumption that parenting was expected)'' or 
``termination.'' The woman reports that she and her husband were never 
told, ``if you can't handle this, you don't have to choose 
termination.'' The woman and her husband ultimately chose to continue 
the pregnancy but she reports that the knowledge of the adoption option 
and the fact that there are dozens of qualified couples waiting to 
adopt ``takes a lot of the pressure off.'' The woman reports ``a lot of 
people panic, because in this situation, there is a very brief window 
during which one must make a decision.'' Mrs. Dillon reports that in 
Wisconsin, 70 percent of Down Syndrome pregnancies are terminated. Mrs. 
Dillon also reports that, of the ten women in her support group, only 
three couples knew in advance that the baby would be born with Down 
Syndrome. The other seven found out at birth.
    The point of this case is that if the experience of this small 
sample in Wisconsin is at all typical, a minority of pregnant women 
learn in advance of significant developmental disabilities, such as 
Down Syndrome. Of those who do learn about such a serious challenge, 
the option of adoption may not be mentioned, and the lack of choices 
may be a factor in the high percentage of terminations. Further, as the 
support group has come together, the parents have shared the fact that 
there is very little competent counseling for parents who give birth to 
children with Down Syndrome or other serious developmental 
disabilities.
    If this is the case with a group of married, mature couples facing 
the challenge of a child born with serious health conditions, imagine 
what the response is of a young, unmarried woman who has little or no 
prenatal care or who is herself struggling with drug or alcohol 
addiction, joblessness and other problems. What is likely to be her 
response in the unlikely event that she learns, before birth, that her 
fetus is likely to be born with significant problems? Is adoption going 
to be discussed with her, as a potential option? And after giving 
birth, in the more likely scenario that the problems come as a complete 
surprise, what is her response? All too often, as the data show, these 
frightened and panicked young women abandon their babies at the 
hospital, setting the stage for years of ``family preservation'' or 
``family reunification'' services and adoption only as a last resort 
five or six years later. Or, if the overwhelmed young single mother 
takes the developmentally disabled baby home and tries to parent, what 
are her chances of success given her limited resources? Is it any 
wonder that overwhelmed adolescent mothers of children with 
developmental disabilities are likely to neglect or abuse such 
children, and that these children later show up in the foster care 
system?
    How much better it would have been to provide a means for these 
mothers, indeed all mothers, with an opportunity for ultrasound and 
other interventions as part of a program of prenatal care! How much 
more cost-effective it would be to provide truly competent counseling 
about all the options, including adoption, so that if a young mother is 
unable or unwilling to raise a challenging newborn, the entire foster 
care detour can be avoided and the baby can go to a waiting, prepared 
adoptive family.
    Here is another case, in the Washington metropolitan area. This was 
the second pregnancy for a young married couple whose first pregnancy 
and delivery, in the Richmond, Virginia, area, had been uneventful. 
Early in the pregnancy, the woman developed symptoms that suggested a 
possible miscarriage and an ultrasound was suggested by her 
obstetrician. The ultrasound was not entirely clear, and a fetal 
echocardiogram was performed. The medical team then suggested a high-
level ultrasound, which resulted in a diagnosis of multiple problems 
with the fetus'' heart, a missing kidney, an abnormal umbilical cord 
and suggestions that the child could have any of a number of 
chromosomal abnormalities, specifically trisomy 13, 18 or 21. That same 
day, termination was suggested to the young couple.
    The pregnant woman, a Chemical Engineer by training, happened to be 
a very sophisticated medical consumer. She had worked at NIH for two 
years and had considered studying to be a physician. The pregnant 
woman, in consultation with her husband, decided to carry the pregnancy 
to term and that if the child were born with a serious condition that 
meant she would live only a few days, they would make plans in advance 
to donate organs and tissue to other babies. As the young woman said, 
knowing the medical situation in advance, there was a medical team 
ready--at two hospitals--to deal with the problems that might be 
present at the baby's birth. The young mother reports ``I can't imagine 
how difficult it would have been to deal with all this at birth, not 
having any preparation. As it was, knowing the information in advance, 
I had the ability to know about trisomy and kidney and heart 
difficulties and I was able to research. I did research on the internet 
and through calls and referrals. I contacted people in advance and got 
e-mail pen-pals who had children born with conditions similar to what 
the medical experts were telling my husband and me we might expect. One 
of my e-mail contacts was in Denmark, the other in North Carolina.'' As 
it turned out, the woman delivered a baby who experienced significant 
distress, was close to death, was placed on a ventilator, was later 
transferred to Children's Hospital and underwent additional intensive 
care. At one point, the medical team was suggesting that the baby would 
need to have a lung removed. But ultimately, the situation turned 
around, the baby was released and today she is ``despite the negative 
early prognosis and neonatal difficulties--a healthy eight-month-old.
    My point is that because of early and sophisticated medical 
intervention, these parents--and especially this mother--was prepared 
to deal with the medical situation of her child. Fortunately, she was 
able to be her own advocate and researcher. Not many women are so 
situated either by education, experience, opportunity or personality. 
For other mothers, someone else must be the researcher, the counselor, 
the person providing full information so that the options are all 
presented.
    These are the kinds of predictable situations which, left without 
being adequately addressed, will have less than ideal outcomes for 
pregnant women, their families and the broader society.
    In summary, we respectfully urge the Subcommittee, as it looks at 
ways to improve children's health and thereby build toward a better 
future, to:

--provide more federal involvement for funding of fetal research and 
        surgery;
--require HHS and other federal agencies to provide more detailed data 
        about disabilities of children in out-of-home care and the 
        relationship of disabilities to termination of parental rights 
        and adoption;
--provide more supportive services to women with high-risk pregnancies, 
        including prenatal tests such as ultrasound, and counseling 
        aimed at increasing adoption awareness.
    Thank you again for inviting us to present testimony. It is 
important to mention that, because of the timing of this hearing, the 
testimony was not reviewed by or cleared with our Board of Directors 
and therefore does not necessarily reflect the views of all of our 
Board, member agencies, member attorneys, individual members, 
supporting foundations or corporations or other individual members, 
donors or volunteers.
    I would be pleased to respond to any questions.

    Mr. Bilirakis. Thank you Mr. Pierce. Is it Dr. Kattan?
    Mr. Kattan. Yes.
    Mr. Bilirakis. Doctor, you are on, sir.

                    STATEMENT OF MEYER KATTAN

    Mr. Kattan. Thank you, Mr. Chairman, and members. I am Dr. 
Meyer Kattan, a professor of Pediatrics at Mount Sinai School 
of Medicine in New York City. Today I am testifying on behalf 
of the American Lung Association and its medical section, the 
American Thoracic Society, regarding asthma. I appreciate the 
invitation to testify and I want to thank Congressman Upton and 
Congressman Waxman for introducing the Childhood Asthma Relief 
Act. Much of what I will recommend today is contained in their 
legislation.
    There are three key points that I would like to make in my 
testimony today. Point 1, asthma is a serious pediatric health 
problem in the United States; point two, though tools exist for 
children to successfully manage their asthma, we are not 
reaching all Nation's children and point three, the Federal 
Government needs to develop a plan to respond to our Nation's 
asthma epidemic.
    Asthma is a serious pediatric health problem. Asthma is the 
most common chronic disease of childhood, affecting 5 million 
children under the age of 18 years in the United States. 
Prevalence for pediatric asthma rose 160 percent between 1980 
and 1994. Rates are increasing for all ethnic groups, 
especially for African-Americans and Hispanic children.
    Asthma is expensive. The growth of the prevalence of asthma 
will have significant impact on our Nation's health care 
expenditures, especially Medicaid. Currently asthma costs over 
$7 billion a year.
    Children are disproportionately affected by asthma. Asthma 
is the No. 1 cause of school absenteeism. In 1995, there were 
over 1.9 million visits to the emergency room for asthma. In 
1996, in New York City, there were more than 15,000 
hospitalizations for asthma in children less than 14 years of 
age. This figure translates into one child being admitted to a 
New York City hospital every 35 minutes. Conditions of poverty 
and social disadvantage greatly influence the risk for 
hospitalization.
    The hospitalization rate among children in East Harlem, 
which is where I work, is 23 times as high as the rate in the 
community with the lowest hospitalization rate in New York 
City. By any measure, and for any category, asthma is a growing 
problem for our Nation's children. The U.S. Health care system 
is not successfully responding to the asthma epidemic. What a 
public health tragedy that we have a disease that disrupts the 
lives of so many children despite the fact that we have the 
capability of allowing children to lead normal lives.
    Obviously there are many barriers that prevent successful 
management of this disease. The drug regime is complex. 
Children with moderate to severe asthma need to be educated on 
how to use a number of drugs. Drugs need to be carefully 
coordinated with how the patients feel and with their daily 
monitoring. Getting the drug regimen right is not enough to 
successfully control asthma. The hope of a child of asthma 
needs to be free of asthma triggers. This can mean ridding a 
home of cockroaches, dust mites and tobacco smoke. Some 
children are being under-medicated, therefore changing patient 
and physician behavior must be an integral part of think asthma 
initiatives.
    Asthmatics in inner cities have limited asthma problem 
solving skills and high levels of life stress. Attention to 
psychological and social factors that affect asthma are 
necessary to reduce morbidity and studies show that even with 
insurance, families in the inner city have difficulty getting 
access to good medical care for an asthma related episode or 
for a follow-up after an asthma attack.
    Indoor and outdoor air pollution plays a role. Children, 
families, schools, coaches need to be made aware that air 
quality can cause asthma attacks, and while many of my comments 
today focus more on the size and complexity of the asthma 
problem, there is encouraging news to share with you. I work 
with the National Institute of Allergy and Infectious Disease 
on the Inner City Asthma Study. This project has shown that by 
empowering patients to effectively communicate with health care 
providers, providing social support and educating and assisting 
families in controlling exposures to indoor asthma triggers, we 
can achieve a reduction in asthma symptoms.
    For the past 10 years, the NHLBI has sponsored the National 
Asthma Education and Prevention Program. This program focuses 
on providing clinicians and patients with the latest 
information on how best to manage asthma. The Health Resources 
and Services Administration supports pediatric pulmonary 
centers. These centers consist of interdisciplinary staff who 
train leaders in asthma care and assist State and local 
agencies in developing systems of care. Clearly the Federal 
Government needs to develop a public health response to asthma.
    In my brief testimony I have listed at least four different 
Federal Cabinet level agencies that have a role in responding 
to asthma: The Department of Health and Human Services, the 
Department of Education, the Department of Housing and Urban 
Development, and the Environmental Protection Agency. 
Coordinating work in diverse Federal agencies on asthma will 
take planning. More specifically, we strongly recommend the 
creation of a Federal asthma plan.
    In conclusion, I want to remind the committee that asthma 
is a serious public health problem. Our health system has tools 
to successfully control asthma, but many barriers exist to 
provide optimal disease management to all children. Last, we 
need a Federal asthma plan to help coordinate the many public 
and private activities in asthma.
    Thank you, and I would be happy to answer any questions.
    [The prepared statement of Meyer Kattan follows:]
  Prepared Statement of Meyer Kattan, Professor of Pediatrics, Mount 
                        Sinai School of Medicine
    I am Dr. Meyer Kattan. I am a Professor of Pediatrics and Chief of 
the Pediatric Pulmonary and Critical Care Division at the Mount Sinai 
School of Medicine in New York City. Today, I am testifying on behalf 
of the American Lung Association and its medical section, the American 
Thoracic Society, regarding asthma. I appreciate the invitation to 
testify today and I want to thank Congressman Upton and Congressman 
Waxman for introducing the Childhood Asthma Relief Act. Much of what I 
will recommend today is contained in their legislation.
    There are three key points I would like to make in my testimony 
today. Point one: asthma is a serious pediatric health problem in the 
U.S. Point two: Though tools exist for children to successfully manage 
their asthma, we are not successfully sharing the tools and information 
with all our of nation's children. Point three: The federal government 
needs to develop a plan to respond to our nation's asthma epidemic. I 
would like to spend the next few minutes expanding on these three 
points.
    Before I do that, let me first tell you what asthma is. Asthma is a 
chronic lung disease in which the lungs are inflamed and more sensitive 
than normal. When the lungs are irritated, the bronchial tubes of the 
lungs become swollen and constrict, preventing air from getting into or 
out of the lung. These obstructive spasms of the bronchi are caused by 
a broad range of triggers that vary from one asthma sufferer to 
another.
    Asthma is a serious pediatric health problem. Asthma is on the 
rise. Asthma is the most common chronic disease of childhood affecting 
5.3 million children under the age of 18 years in the United States. 
The prevalence for pediatric asthma rose 160% between 1980 and 1994. 
Rates are increasing for all ethnic groups and especially for African 
American and Hispanic children. While some children appear to out grow 
their asthma when they reach adulthood, most, three-quarters will 
require life-long treatment and monitoring of their condition.
    Asthma is expensive. The growth in the prevalence of asthma will 
have significant impact on our nation's health expenditures, especially 
Medicaid. Currently, asthma costs the U.S. over $7.5 billion a year.
    Children are disproportionately affected by asthma. Asthma is the 
number one cause of school absenteeism. In 1995 asthma was the cause of 
over 1.9 million visits to the emergency room. Asthma is the reason for 
one-sixth the of all pediatric emergency room visits. In 1996 in New 
York City, there were more than 15,000 hospitalizations for asthma in 
children 14 years or younger. This figure translates into one child 
being admitted to a New York City hospital every 35 minutes. Conditions 
of poverty and social disadvantage greatly influence the risk for 
hospitalization. Children from low-income communities are five times 
more likely to be hospitalized as children in high-income communities. 
The hospitalization rate among children 0-14 years in East Harlem which 
is adjacent to Mount Sinai Hospital where I work is 23 times as high as 
the rate in the community with the lowest hospitalization rate in New 
York City.
    By any measure and for any category, asthma is a growing problem 
for our nation's children.
    The U.S. health care system is not successfully responding to the 
asthma epidemic. As a doctor who sees children with asthma, I am 
continually frustrated by needless suffering and expense that surrounds 
children with asthma. Much of the school absenteeism, the visits to the 
emergency room and the hospitalizations are preventable. Today, we have 
powerful drugs that can safely allow children manage their asthma. 
Through proper use of drugs to control the underlying chronic airway 
inflammation, rescue drugs to stop asthma attacks as they happen, 
careful patient and physician monitoring and through reduced exposure 
to asthma triggers, children with asthma can live healthy active lives. 
Despite the good news that asthma is controllable, there are many 
barriers that prevent successful management of the disease.
    The drug regime is complex. Children with moderate to severe asthma 
need to be educated on how to use a number of drugs. Which drugs to use 
and how much of each drug to use will vary on how the children are 
feeling. Drug use needs to be carefully coordinated with how the 
patients feel and what their daily peak flow reading says.
    Asthma drugs can be expensive. For those families without insurance 
or with low prescription drug caps, purchasing asthma medications can 
be expensive. This is a particular problem for families on a tight 
budget.
    Asthma drugs need to be accessible. Many schools have policy that 
prevents students to carry any type of prescription medication with 
them. In these schools, asthma inhalers end up locked up in the school 
nurse's office. Children, with parental permission, need to be able to 
carry the inhaler with them to school so they can immediately treat 
asthma attacks. Keeping asthma medication with the school nurse does 
not provide the immediate response necessary to prevent asthma attacks.
    Multiple factors contribute to asthma morbidity and therefore 
treating asthma requires a variety of strategies. Getting the drug 
regime right is not enough to successfully control asthma. The home of 
a child with asthma also needs to be free of asthma triggers. This can 
mean ridding a home of cockroaches, dust mites, encouraging parents to 
stop smoking, removing carpeting, giving away the family dog, and 
making the house dust and mold free. This can be especially difficult 
in public housing. Families need help in identifying what are the 
triggers for their child's asthma attacks and removing those triggers 
from the home. Studies show that even with insurance, families in the 
inner-city have difficulty getting access to good medical care for an 
asthma-related episode or for follow-up after an asthmatic attack. 
Access to care needs to be facilitated. The pattern of medication use 
suggests an underutilization of preventive medications. Therefore 
changing physician and patient behavior must be an integral part of an 
asthma initiative. Asthmatics in inner-cities have limited asthma 
problem-solving skills, multiple caretakers, child and adult adjustment 
problems and high levels of life stress. Attention to psychosocial 
factors that affect asthma are necessary to reduce asthma morbidity.
    Schools also need to be made safer for children with asthma. School 
staff needs to be educated on how to respond to asthma attacks. Schools 
can also help children reduce their exposure to environmental triggers 
in the school setting that cause asthma. Leadership from the Department 
of Education would help resolve some of the school-related issues.
    Indoor and outdoor air pollution also plays a role. High outdoor 
levels of ozone and high indoor levels of nitrogen dioxide from 
unvented gas stoves exacerbate asthma symptoms. Children, families, 
schools, coaches need to be made aware the air quality can cause asthma 
attacks in children with asthma. Depending on the air quality, outdoor 
activity should be limited or eliminated to prevent asthma attacks. 
However, we should not be content to let poor air quality turn children 
with asthma into prisoners of their own homes. The EPA has begun to 
study the relationship between air quality and asthma. We as a nation 
must do more to improve the air quality.
    While many of my comments today have focused on the size and 
complexity of the asthma problem, there is encouraging news to share 
with you. Public and private programs are successfully overcoming some 
of the barriers that I have mentioned and are providing children the 
tools the need to successfully manage their asthma. The National 
Institutes of Health is sponsoring several activities that are making a 
difference.
    The American Lung Association has developed a program called Open 
Airways for Schools. The program informs students of the actions they 
must take to help prevent an asthma attack and empowers them to better 
manage their asthma with the assistance of parents, teachers, school 
nurses and physicians. This is accomplished through six 40-minute 
lessons, which are taught by trained volunteers. The interactive 
approach utilizes group discussion, stories, games, and role-play to 
promote children's active involvement in the learning process.
    The original Open Airways program was tested with over 200 
children, primarily of African American and Hispanic descent. After 
completing the program, not only were the children better able to 
manage their asthma but their parents reported that they, too, took 
more steps to help control their children's asthma.
    I work with the National Institute of Allergy and Infectious 
Disease on the Inner City Asthma Study. This project has shown that by 
empowering patients to effectively communicate with health care 
providers, providing psychosocial support, and educating and assisting 
families in controlling exposures to indoor asthma triggers, we can 
achieve a reduction in symptoms, hospitalizations and emergency 
department visits.
    The National Heart, Lung and Blood Institute is also taking a 
leadership role in responding to asthma. For the past 10 years NHLBI 
has sponsored the National Asthma Education and Prevention Program. 
(NAEPP). NAEPP focuses on providing clinicians and patients with the 
latest information on how best to manage asthma. NAEPP has pioneered 
efforts to make asthma information materials available in many 
languages and has developed culturally appropriate education materials.
    The Centers for Disease Control and Prevention also has an 
important role to play. The CDC collects data on national asthma 
treats. Much of what we know about the prevalence of asthma comes from 
CDC efforts. Additionally, CDC has developed a public-private asthma 
program called ZAP Asthma. This program sends community health workers 
into the homes of low-income families to aid the family in reducing 
exposure to the asthma triggers that cause asthma attacks.
    The Health Resources and Services Administration supports Pediatric 
Pulmonary Centers. These Centers consist of interdisciplinary staff who 
train leaders in asthma care and assist state and local agencies in 
developing systems of care.
    Clearly, the federal government needs to develop a public health 
response to asthma. In my brief testimony, I have listed at least four 
three different federal cabinet level agencies that have a role in 
responding to asthma--the Department of Health and Human Services, the 
Department of Education, the Department of Housing and Urban 
Development, and the Environmental Protection Agency. Clearly getting 
four large and diverse federal agencies to work in a coordinated 
fashion on asthma will take planning. More specifically, we strongly 
recommend the creation of a Federal Asthma Plan. The ``Federal Asthma 
Plan'' should bring together key federal agencies, medical professional 
societies, voluntary health organizations, employers and patients to 
develop a federal plan to coordinate the many elements of an effective 
public health response to asthma. Components of a federal plan should 
include research, surveillance, patient and provider education, 
community awareness, indoor and outdoor air quality, and access to 
health care providers and medication.
    In conclusion, I want to remind the committee that asthma is a 
serious pediatric health problem. Our health system has tools to 
successfully control asthma, but many barriers exist to providing 
optimal disease management to all children. Lastly, we need a federal 
asthma plan to help coordinate the many public and private activities 
in asthma.
    Thank you and I would be happy to answer any questions.

    Mr. Bilirakis. Thank you, doctor. Thank you very much.
    Dr. Weisman.

                 STATEMENT OF RICHARD S. WEISMAN

    Mr. Weisman. Mr. Chairman and members of the subcommittee, 
my name is Dr. Richard S. Weisman. I am a member of the Board 
of Directors of the American Association of Poison Control 
Centers as well as an Associate Professor of Pediatrics at the 
University of Miami School of Medicine and the Director of the 
Florida Poison Control Center in Miami.
    Poisoning is the third most common form of unintentional 
death in the United States. It accounts for 285,000 
hospitalizations, 1 million days of acute hospital care, and 
13,000 fatalities each year. The total direct costs associated 
with poisoning exceeds $3 billion annually. That is more than 
we spend on gunshot wounds, burns and drownings each year.
    Poison centers are our Nation's primary defense against 
injury and death from poisoning. Twenty-four hours a day the 
general public and health care practitioners contact their 
local poison centers for help in diagnosing and treating 
victims of poisoning. With rapid diagnosis and treatment, both 
common and exotic poisonings, medical outcomes are improved and 
countless lives are saved.
    In 1998, our Nation's poison control centers answered more 
than 2 million poisoning emergency calls, more than 1 million 
of these cases involved children under the age of 6. In over 70 
percent of these poisonings, the patient was managed safely at 
home.
    Since a call to the poison control center is much less 
expensive than a trip to the emergency department, the result 
is a dramatic cost savings for the health care system and 
taxpayers.
    In a recent study sponsored by the Department of Health and 
Human Services and published in the Peer Review Journal, the 
Annals of Emergency Medicine, poison centers reduced medical 
spending by up to $400 million annually. The cost savings from 
poison centers could even be greater if more people knew how to 
call them.
    Currently there are over 130 different telephone numbers 
for poison centers instead of one standard nationally 
recognized and easily remembered telephone number. Today if you 
dial the number of a poison center that does not operates in 
your area, you will hear ``you have reached a nonworking number 
from your area code.'' To the parent of a 2-year-old who has 
just swallowed someone else's prescription medicine, this can 
be devastating, but poison centers have not had the money to 
implement an integrated telephone network.
    Despite their successes, poison centers struggle to exist. 
Most centers are funded by a fragile patchwork of State, local 
and private dollars.
    Mr. Chairman, you and your colleagues have a wonderful 
opportunity to help poison centers to prevent poisonings and 
improve survival. We are extremely grateful for the efforts of 
Congressman Fred Upton and Congressman Edolphus Towns, who have 
introduced House bill 1221, and to Chairman Bilirakis for his 
leadership and to the 12 committee members that have signed on 
as cosponsors.
    The Poison Control Center Enhancement and Awareness Act of 
1999 will stabilize poison control centers. It will further 
reduce the cost of health care.
    It will allow poison control centers to develop and improve 
poison prevention and it will improve care of the victims of 
poisoning. We hope that in the upcoming days you will support 
the anecdote for our Nation's poison control centers.
    Thank you very much.
    [The prepared statement of Richard S. Weisman follows:]
Prepared Statement of Richard S. Weisman, Chairman, Government Affairs 
       Committee, American Association of Poison Control Centers
    Mr. Chairman and Members of the Subcommittee: My name is Dr. 
Richard S. Weisman. I am a member of the Board of Directors of the 
American Association of Poison Control Centers, as well as an Associate 
Professor of Pediatrics at the University of Miami School of Medicine 
and the Director of the Florida Poison Information Center in Miami. 
Prior to accepting that position I was the Director of the New York 
City Poison Center for more than a decade.
    Poisoning is the third most common form of unintentional death in 
the United States. At least one out of every 75 U.S. citizens will be 
exposed to a potentially toxic substance every year. More than half of 
these exposures will involve children under the age of 6 who are 
exposed to poisons in their own homes. Poisoning accounts for 285,000 
hospitalizations, 1.2 million days of acute hospital care, and 13,000 
fatalities yearly. The total direct costs associated with poisoning 
exceed $3 billion annually. That is more than we spend on gunshot 
wounds, burns or drownings yearly.
    Poison centers are our nation's primary defense against injury and 
death from poisoning. Twenty-four hours a day, the general public and 
health care practitioners contact their local poison centers for help 
in diagnosing and treating victims of poisoning. These poisonings 
involve everything from aspirin and household products to snake bites, 
insecticides, major chemical spills, and workplace chemicals. Poison 
centers are now working with the Centers for Disease Control and 
Prevention to develop responses to toxic weapons of mass destruction. 
With rapid diagnosis and treatment of both common and exotic 
poisonings, medical outcomes are improved and countless lives are 
saved.
    In 1998, our nation's poison centers answered more than two million 
poison emergency calls. Most often, these calls were from a mom, a dad, 
or a child care provider. In Florida alone we receive over 500 calls 
from frantic parents each day. With poison center assistance, 70% of 
these poisonings can be managed safely at home. Since a call to the 
poison center is much less expensive than a trip to the emergency 
department, this results in dramatic cost savings to health care 
systems and taxpayers. A 1995 study, sponsored by the Department of 
Health and Human Services and published in the peer-reviewed journal 
Annals of Emergency Medicine, showed that poison centers reduced 
medical spending by up to $400 million annually. But the cost savings 
from poison centers would be even greater if more people knew how to 
call them.
    Currently, there are over 130 different telephone numbers for 
poison centers instead of one standard, nationally recognized, and 
easily remembered telephone number. Today, if you dial the number for a 
poison center that does not operate in your area, you will hear: ``You 
have reached a non-working number from your area code.'' To the parent 
of a 2-year old who has just swallowed someone else's prescription 
medicine, this can be devastating--but poison centers have not had the 
money to implement an integrated phone network.
    In fact, despite their success, poison centers struggle to exist. 
Most centers are funded by a fragile patchwork of state, local, and 
private monies. Since poison centers do not generate revenue, they have 
been easy targets when sponsoring hospitals and state legislatures trim 
their budgets. The result is more catastrophic than such well-
intentioned administrators can imagine. The cost of poisoning increases 
dramatically. There are fewer highly-trained toxicology experts to 
provide immediate treatment advice. The medical community loses a 
training environment. Parent education programs, which help prevent 
unintentional poisonings in the first place, are reduced or eliminated. 
In short, while the public loses a poison prevention program, a child's 
chance of surviving a poisoning is reduced.
    Mr. Chairman, you and your colleagues have an opportunity to help 
prevent poisonings and improve survival from poisoning. Congressmen 
Fred Upton and Edolphus Towns have introduced H.R. 1221, the Poison 
Control Center Enhancement and Awareness Act of 1999. This bill will 
stabilize poison center funding, simplify access to poison centers, 
further reduce health care costs, and facilitate national poison 
prevention efforts. We support this effort. Your Senate colleagues, who 
passed the companion bill, S. 632, by unanimous consent, support this 
effort. On behalf of our country's children, we hope that you will, 
too.

    Mr. Bilirakis. Thank you very much, doctor. Doctor Kattan, 
in your testimony you point out that although the barriers to 
managing asthma are significant, there are some public and 
private programs that are successfully overcoming some of these 
barriers. You note that at least four different Cabinet level 
agencies, HHS, HUD, the Department of Education and EPA, have a 
role in responding to asthma.
    You recommend, and you mentioned it a number of times, a 
Federal asthma plan, that would bring together key Federal 
agencies, professional medical societies and volunteer health 
organizations to coordinate a range of activities designed to 
better manage asthma. Frankly, it seems so logical to me that I 
guess that is probably the reason why it hasn't been done up to 
now, because it makes so much sense.
    You do feel that is a problem. You do feel that there is 
just lack of coordination. What, is there duplication of 
effort, things of that nature?
    Mr. Kattan. It is not simply a duplication of effort. I 
think there is a role for all of these agencies to coordinate 
these efforts. The problem is asthma is not a single disease. 
Many things have to be tailored to the particular problems. 
There is not one asthma fix. What is good in one community may 
not be the best in another community. What needs to be done, 
there are various programs that are available and have been 
shown to be successful. There are areas where our knowledge is 
lacking. We need better surveillance to know what the needs 
are.
    If we know what is going on in each community and we can 
tailor our approaches that are available, we will succeed in 
controlling this disease. Remember, our goal is that children 
with asthma should be leading normal active lives.
    Mr. Bilirakis. Are you aware of any existing models where 
the coordinations you referred to have been attempted and which 
have shown some success?
    Mr. Kattan. There is coordination in terms--at various 
levels. There is coordination in terms of having multi-
disciplinary teams, which include social work, physicians, 
nurses, community workers, where one can integrate various 
programs.
    Mr. Bilirakis. In areas other than asthma too? Not just 
asthma, not other than, but in addition to asthma.
    Mr. Kattan. In addition to asthma?
    Mr. Bilirakis. Yes, successful coordination efforts.
    Mr. Kattan. I can't think of any off the top of my head, 
but I think there are examples where volunteer agencies have 
worked together with government, for example, the American Lung 
Association and the Cystic Fibrosis Foundation have worked 
together, in terms of directing research, in terms of providing 
community programs. I think those are good examples, and they 
have coupled with pharmaceutical companies as well.
    Mr. Bilirakis. I would ask you, and maybe you threw in the 
American Lung Association, whatever, if you might furnish us 
with any information you may have where there are other 
efforts, where there are efforts in place for this 
coordination. Frankly, it makes a lot of sense to me. I even 
talked to staff about it.
    Mr. Kattan. Yes. I think for example, the National 
Institute of Environmental Health is working with the National 
Institute of Allergy and Infectious Disease in funding some 
research and the EPA. All three agencies are working together 
on the Inner City Asthma Study. There is an example where 
agencies can work to save money and get information and provide 
a program.
    Mr. Bilirakis. Okay. I again am going to ask you not to 
respond now, but maybe you might think about it, and you seem 
to feel very strongly about it. That being the case, why don't 
you furnish us with details in terms of suggestions on how you 
think this ought to operate and work and what not so it can 
help us in terms of our deliberations.
    Dr. Weisman, Mr. Brown can speak for himself, but he was 
sort of taken aback by some of the statistics you gave us, and 
that is one thing about this job up here, we learn about so 
many of these horrible things, horrible illnesses and what not 
and it just drives you up a tree that you can't waive a magic 
wand. You wish you could waive a magic wand to solve them all.
    You are a proponent of poison control centers, and you 
don't feel that they should be--you believe very strongly in 
them and you feel that they should remain in place, if not 
expanded, is that correct?
    Mr. Weisman. That is correct, sir.
    Mr. Bilirakis. All right. You have also talked about a 
national 24 hour, I don't know if you said it in so many words, 
but you talked about one national line that would be available 
for people to call, rather than the montage of so many.
    Mr. Weisman. That is correct. The situation that exists 
right now in the United States is that the average poison 
control center is receiving about 8 calls per 1,000 population. 
In areas of the country where they have knocked down the 
barriers of communication, that number goes up as high as 19 
calls per 1,000 population.
    One of the large problems that we face in the United States 
is this montage of 130 different telephone numbers, where it is 
very, very difficult for us to set up a partnership with 
industry who would be more than happy to assist with the 
advertisement of these numbers. If we had one single number in 
the United States, it would allow us to advertise on a 
nationwide basis and we would be able to reduce the number of 
unnecessary emergency department visits for poisoning.
    Mr. Bilirakis. Thank you. I know Dr. Shiebler of the 
University of Florida, one of your rival universities, I guess 
in more than just football, is a strong proponent of that type 
of legislation.
    My time is up. I wanted to recognize Mackenzie, who is such 
a gutsy, courageous little girl. In spite of the fact that you 
don't feel well, you are tough enough to be here. I will tell 
you something. Dad is a policeman in the District of Columbia, 
and he is a pretty tough guy. You have to be a pretty tough 
guy. So he feels very strongly about you and about your 
illness, honey, and that is why he broke down here.
    We certainly appreciate all that. Thank you. Mr. Brown.
    Mr. Brown. Mr. Chairman, thank you. Mackenzie, I saw you 
touch your dad's hand and how much you love your dad and how 
much he loves you.
    Mr. Pierce, thank you for your testimony about adoption. 
Dr. Weisman, as the chairman said, I was pretty amazed by some 
of the alarming statistics you mentioned and just that there is 
no toll-free number. You mentioned that there is no sort of--
not toll-free, but national number for people to call. You said 
when you have knocked down the barriers of communication, you 
said that in response to his communication, the number went 
from 8 to 19. What does that mean, knock down the barriers of 
communication? What have you done in those communities?
    Mr. Weisman. The State of Washington is the example I used 
where they have developed a wonderful poison prevention 
program. It is integrated into all of the education programs in 
school. Over a number of years of being able to increase their 
recognition and to bolster the capabilities of that center, 
they basically get all of the calls involving poisoning, where 
very few of those cases pick up the phone and dial 911 and rush 
off to the emergency room, only to arrive there and find they 
have a nontoxic exposure. That is where the vast majority of 
the dollar savings occurs, is the cost of a call to the poison 
center is $19, whereas the cost of that ride to the emergency 
room and that emergency visit can be anywhere between $600 and 
$900 depending on the region of the country you are in. Seventy 
percent of all the calls the poison centers gets can be treated 
at home by the doctors and nurses in the poison center. Seventy 
percent. We believe that we can knock down that difference 
between 7 calls per 1,000, which is the average in the United 
States, and 19, which the State of Washington has been able to 
demonstrate is what you can get to, with the appropriate 
availability and access to a poison center. We think going to a 
single nationwide number would allow us to increase the number 
of calls dramatically as it begins to be advertised on 
products, as it begins to be advertised on network television 
and so forth.
    Mr. Brown. So no companies can put anything on a product 
because there is no uniform number. You mentioned 7 per 1,000. 
Is that per year?
    Mr. Weisman. 7 per thousand per year.
    Mr. Brown. Thank you for that. That is very helpful.
    Dr. Kattan, you mentioned in your discussion of asthma that 
the increase from 1980 to 1994 is 160 percent. When EPA 
Director Carol Browner came in and discussed the particular 
matter on the ozone issues a couple of years ago, there was a 
great deal of discussion about asthma, obviously.
    In light of progress or lack of progress in clean air, what 
is the effect on asthma? Can you ascribe much of the air 
quality issue to the increase in asthma, and role that in, if 
you would, to minority populations who have been victimized, if 
you will, by a significantly higher increase?
    Mr. Kattan. I think we have to first distinguish indoor air 
quality and outdoor air quality, and I think we should be 
concerned about both issues. Indoor environment is very 
important, talking about exposure to cigarette smoke. We are 
talking about exposure to nitrogen dioxide, which comes 
predominantly from gas stoves, and that has been shown to 
increase symptoms. In areas where the houses are in disrepair, 
some of these gas stoves are not vented properly. We are living 
in homes which are more tightly sealed, so there is greater 
exposure to those indoor pollutants, plus the allergens in the 
home as well.
    In terms of outdoor air pollution, air quality in some 
areas has improved, not in all areas, but asthma prevalence 
continues to go up. But there is no question that air pollution 
or poor quality air contributes to asthma symptoms and 
increases asthma symptoms. Ozone has been shown to increase 
asthma symptoms and increase emergency room visits. The diesel 
particles, they have been shown to be associated with increased 
respiratory symptoms as well.
    More research needs to be done in terms of the relationship 
between air pollution and asthma, and also between whether air 
pollution actually increases the prevalence of asthma, not just 
increasing the symptoms. I think we have to distinguish between 
what brings on asthma and what exacerbates symptoms once you 
have asthma.
    Mr. Brown. But clearly the statistics show the incidence of 
asthma is higher. But you are not--science is not willing to 
ascribe air quality for sure to the increased incidence. They 
are certainly ascribing air quality as a component of bringing 
on more frequent symptoms for those that have asthma, or 
extended symptoms, if you will.
    Mr. Kattan. That is correct.
    Mr. Brown. For extended symptoms, if you will.
    Mr. Kattan. There is some evidence that actual exposure to 
certain pollutants increases the response to certain allergens 
also provoking asthma.
    Mr. Brown. If I could, Mr. Chairman, to what do you 
attribute the increase in incidents? If it is----
    Mr. Kattan. We don't know. There are many things. In terms 
of the onset of asthma, certainly we know that maternal smoking 
during pregnancy and early in life increases asthma symptoms. 
Exposure to allergens. Maybe children are spending more time 
indoors in more tightly sealed homes playing with computers. 
Onset of asthma. Asthma, not symptoms.
    Mr. Brown. So you know for sure that pregnant women smoking 
is a cause and you believe indoor air quality is a cause.
    Mr. Kattan. Indoor exposure to dust mites. The more you are 
exposed to dust mites in the home or longer time and higher 
levels, the more likely you are to develop asthma. This is all 
recent evidence that certain aspects can affect the onset of 
asthma. More research needs to be done in this area. These are 
very long-term studies that need to be done before we have 
definitive answers.
    Mr. Brown. Thank you, Dr. Kattan.
    Mr. Bilirakis. Ms. DeGette.
    Ms. DeGette. Thank you, Mr. Chairman. Thanks for coming, 
Mackenzie. What grade are you in?
    Ms. Mackenzie Mahr. Second grade.
    Ms. DeGette. Did I hear your dad say that you actually do 
your own injections?
    Ms. Mackenzie Mahr. Yes.
    Ms. DeGette. How long have you been doing that?
    Ms. Mackenzie Mahr. I have done it since a few months.
    Ms. DeGette. That is really great. I bet your mom and dad 
are really proud of you, and I bet your doctor is, too. I have 
a little girl, Frannie, and she is almost 6. She has Type 1 
diabetes like you do. She has to sometimes pat her mom and dad 
on the hand, too, because it is hard for the moms and dads, 
too. I just want to tell you, we are really working hard in 
Congress so that we can cure this disease by the time you go to 
college. Don't you think that would be a good thing? We are 
going to work to do that and I think that you can help me. 
Maybe you would like to meet Francesca, my daughter, sometime. 
I think you guys would get along. Your dad and I will set up a 
play date, okay? Thanks. Thanks for coming.
    Dr. Kattan, something you talked about struck me. I wonder 
if you know how many, on average, how many attacks do kids with 
asthma have per year? Do you have a sense of that?
    Mr. Kattan. It depends on what you mean by attack, but I 
won't evade the question. Let's talk about emergency room 
visits in an inner city population. An individual, which is a 
higher risk population, somewhere around two emergency room 
visits a year. But some children have over 10 and some children 
have none. The point is that it is a variable disease. Some of 
the programs would be more effective if we targeted what 
population or what specific group we wanted to treat.
    Ms. DeGette. Of that inner city population that you are 
talking about, do you know what percentage have private health 
insurance or Medicaid or some kind of health insurance?
    Mr. Kattan. I don't know the answer to that, but I know 
that in the inner city asthma study where we recruited patients 
randomly from emergency rooms, over 90 percent had insurance. I 
made the point that despite having insurance, there were still 
barriers to the care.
    Ms. DeGette. What were those barriers?
    Mr. Kattan. Unable to reach doctors when their child was 
sick. Telephones that don't get answered in clinics or clinics 
that aren't open at night when the parents need help. So the 
choice is to go to the emergency room. Others, the barriers, 
parents felt that their doctors didn't know that much about 
asthma and preferred to go to the emergency room where they 
felt that the doctors had more experience.
    Ms. DeGette. Are there pediatric asthma specialists that 
people can go to?
    Mr. Kattan. Yes, there are. There are pediatric 
pulmonologists, pediatric allergists, and there are some people 
in primary care who have an interest in asthma. But in major--
and people who deal with a lot of patients with asthma, they 
also have the other personnel that are needed to deal with the 
psychological barriers, the social barriers that are important. 
These factors are very important in causing morbidity.
    Ms. DeGette. Do you think that--of the population you saw, 
how many of them were seeing these pediatric specialists?
    Mr. Kattan. Not the majority. The majority were being taken 
care of in local health clinics.
    Ms. DeGette. You said that seeing these specialists and the 
others that work with them assist in morbidity issues and other 
issues. Can it help decrease the number of emergency room 
visits, do you know statistically?
    Mr. Kattan. Yes. There have been studies to show patients 
taken care of by people who specialize in asthma, that there is 
an improvement in outcome. I want to point out that one of the 
interventions that we did in the inner city asthma study, we 
used an innovative approach. We did not use doctors. We used an 
asthma counselor. The asthma counselor who was trained to deal 
with the specific issues of inner city children, whether it be 
social issues or access to air care issues or improving 
communication with the doctor, telling them what questions to 
ask and telling them what symptoms to tell the doctor, we found 
a significant reduction in symptoms. So there could be 
innovative ways to--given the limitations that we have. We 
can't have a specialist on every corner, but we can certainly 
extend our efforts.
    Ms. DeGette. Were those people covered by insurance?
    Mr. Kattan. Yes, they were, most of them.
    Ms. DeGette. Thank you. So it is a matter of getting them 
in the right places.
    Mr. Kattan. Yes.
    Ms. DeGette. Thank you, Mr. Chairman.
    Mr. Bilirakis. Mr. Strickland.
    Mr. Strickland. Thank you, Mr. Chairman. I was struck by 
the fact that, Dr. Kattan, you talked about these factors 
correlated with asthma, dust, and cockroaches and so on. And 
over the weekend I was in my district at the Osteopathic School 
of Medicine in Athens, Ohio, and was told that they had 
recently done some research in my rural Appalachian area where 
they found much higher incidents of asthma and diabetes and so 
on. And then I hear the discussion about the inner city 
children. It seems to me that the commonality between the 
Appalachian children that I represent and the inner city 
children is a matter of poverty and the fact that many of them 
live in environments and under conditions where it is difficult 
for some of these factors that you have mentioned to be 
eliminated. And so I am interested in your opinion about the 
correlation, the causal correlation between poverty and some of 
these problems that you have observed.
    Mr. Kattan. As I mentioned, obviously poverty is a major 
risk factor for asthma. But I think it deals with a lot of the 
problems, access to care, access to medication, access to good 
medical care, life stresses, social problems. There are 
priorities. If you don't have heat, you may let your child 
wheeze a little longer to the extent that you will only take 
him to the emergency room when there is--when the child is 
really having difficulty breathing and that is your only 
choice, to go to the emergency room. If you have a whole number 
of children running around cold, that is more important.
    Mr. Strickland. If you are burning wood or coal in a stove 
to keep warm----
    Mr. Kattan. Those are other indoor pollutants. The 
emissions from gas stoves, some people are using their gas 
stoves for heat. What we found in the inner city asthma study 
is that in the winter months the exposure to nitrogen dioxide 
was high and related to symptoms.
    Mr. Strickland. Something else that I thought of as you 
were talking, so many areas in my district are exposed to 
flooding conditions, people living in flood plain areas and 
they get flooded. Their houses get wet and the insulation gets 
wet and the mobile home gets wet and they try to let it dry 
out, and continue to live there. I assume those kinds of 
conditions would be very problematic for an asthmatic child as 
well.
    Mr. Kattan. Yes. What you are pointing out is there are 
many factors. One has to look at the factors in a particular 
area in a particular community. There is some commonality, but 
in terms of dampness and wet, mold is a major allergen in 
asthma. A lot of children are allergic to molds whether in 
inner cities, whether in Arizona, but all over the country. 
That and cockroaches, pet allergens, all of these are 
important.
    Mr. Strickland. So the answer is not only good specialty 
medical care and proper medications and education, but also 
living environments and that is----
    Mr. Kattan. It is changing the environment, but I believe 
that tailoring programs to deal with individual--community 
issues or individual issues is what it takes. It doesn't mean 
that there needs to be a whole regimen for each individual 
patient, but there are methods at least identifying the risks 
and dealing with those risks.
    Mr. Strickland. I was also struck by Dr. Weisman's 
statistics regarding the number of deaths that occur with 
poisonings. What was the total number?
    Mr. Weisman. 13,000.
    Mr. Strickland. I was wondering, Dr. Kattan, do you have an 
estimate as to the number of children's deaths that occur in 
our country each year because of asthma?
    Mr. Kattan. Yes. I believe it is under 1,000. Death is 
not--is a tragedy because it is a preventable disease. To have 
anybody die of asthma is devastating. But the real impact on 
day-to-day life is the day's loss of work for parents, day's 
loss from school, the great disruption of life that these 
children have because they have symptoms that go untreated. As 
I keep saying for the third time, a child with asthma should be 
normal. Anything short of that is a failure of our system.
    Mr. Strickland. I want to thank each of you. I would also 
like to thank Mackenzie. I think her father has obviously been 
a good father. We were all struck by how she was comforting you 
and for which you have to be thankful, sir. I thank you all 
very much.
    Thank you, Mr. Chairman.
    Mr. Bilirakis. Thank you, Mr. Strickland. Mr. Towns, to 
inquire.
    Mr. Towns. Thank you, Mr. Chairman. Let me thank you for 
holding this hearing. I think this is a very important hearing 
and I am hoping that out of this the committee can come up with 
a comprehensive child health bill. In order to do that, I think 
that we have to look at all of the aspects. I know that this 
committee does not have jurisdiction over it, but there is 
another aspect that we need to look at very seriously, Mr. 
Chairman, and that is the toy guns.
    As a result of toy guns--I know that this committee does 
not have jurisdiction over it, but the point is that when we 
look at this matter in a comprehensive way, I think we have to 
look at all of this. Even in my own district, I have had 
youngsters to be killed because of a toy gun and cause others 
to be injured because of toy guns. These guns look like real 
guns.
    When I brought it into the airport, my aid, the people at 
the counter ducked behind the counter because they thought it 
was a real gun. Then they say that in order to show it is a toy 
gun, they put a red sticker on it. Now, the criminals are now 
painting the tips of their guns red, so that is not working. So 
we now have to come to grips with the fact that we must do 
something with this problem.
    Of course, you have now the criminals are taking toy guns 
and robbing because in New York State, if you rob with a toy 
gun, you don't violate the Sullivan law. Which means lesser 
charges, therefore rob with a toy gun and if you get caught, 
you don't have to worry about the Sullivan law. At the same 
time kids are being killed. Police officers are not going to 
interview anybody if they have a toy gun. They are not going to 
say is your gun real or is your gun a toy. They are not going 
to ask those kinds of questions. They are going to shoot. As a 
result, many youngsters die as a result of this.
    Mr. Chairman, in this country, every day, 27 kids, a whole 
classroom of kids are killed from guns. A whole classroom is 
wiped out every day in the United States of America. We are 
sitting here not doing anything about it. When we look at 
comprehensive health care, we cannot ignore what is happening 
with our children with handguns. Look at that board there. Some 
of those guns look so real. There is no need for that. We 
should address that along with all of these other issues.
    Let me move to thank you, Dr. Weisman, in particular for 
your efforts in poison control. The doctors are asking that we 
have a central number. They are saying that in the training 
that many times they don't know what to do when a mother shows 
up in the emergency room with a child. They need to have 
somebody to call that has had some training in this area. I 
think that the thing that really bothers me, Doctor, is that we 
are saving money by funding the poison control centers and we 
refuse to do it with any kind of consistency. So therefore a 
lot of people that have the knowledge walk away from the 
centers because they don't know whether or not they are going 
to have a job next month or not. That is not a way to deal with 
something as serious as this.
    I want to applaud you for all of the work that you have 
done in this area, and to say to you that I am hoping as we 
move forward with this comprehensive bill that we will be able 
to have a set amount for poison control centers. I don't think 
that we should leave it where if we have some members up here 
in Congress who feel good on a given day will say that 
therefore we should give some money to poison control centers 
because we are talking about lives and we are talking about 
humans. That is the thing that we need to deal with.
    Let me go to my quick question before the clock runs out on 
me. I think that, Mr. Chairman, that is, I think that when we 
look at the poison control centers, with everyone being so cost 
conscious in health care, I would like to know, Dr. Weisman, if 
you could comment on the health care savings achieved by people 
utilizing poison control centers versus the emergency rooms.
    Mr. Weisman. The data that we have from this actually 
resulted from a congressional hearing that you chaired back in 
1994, and we were very, very thankful because it has been your 
efforts that have really spearheaded our efforts in Congress 
this year and in the past. What that study which was conducted 
by HHS found was that for every dollar invested in poison 
control centers, that $7 could be saved. That is about the 
calls that we received in poison centers, and we get a lot of 
them. We could possibly get a lot more. The vast majority of 
them can be managed in the home by the parents under the 
supervision of the nurses and doctors in the poison center. 
They don't require the person to call 911 and run off to the 
emergency room and keep the doctors there busy, first, trying 
to find out what the product is and trying to find out how to 
treat it.
    If that call goes to the poison center and the doctor in 
the poison center is saying, well, we need to store the 
products a little better but we are okay this time because one 
of those tablets is not going to hurt little Johnny, we just 
saved an awful lot of money. We know that 70 percent of all of 
the calls to a poison center can be managed just like that 
without any further cost to the health care system. What we 
need to do is to make it that every American citizen has access 
to a poison center, knows the number, knows that when there is 
a poisoning they pick up the phone and dial the special 800 
number. It doesn't cost them anything, they are immediately 
connected to a center with trained individuals, and this 
prevents the expense of using unnecessary health care 
resources. That is where the savings are.
    We believe that with the particular bill that has been 
introduced with its $26.6 million that it has the potential of 
saving a tremendous amount of money because if we are able to 
move that margin from 7 calls per thousand up to 19 calls per 
thousand, the difference between those 2 are the people that 
are going unnecessarily to emergency departments. And I think 
that there is an awful lot of money that investment in this 
program will result in the future.
    Thanks.
    Mr. Towns. Thank you. Let me thank you, too, Mackenzie for 
coming and sharing with us. It means a lot. Who knows, as a 
result of you being here, maybe we will do the right thing. 
Thank you so much.
    Mr. Bilirakis. You know, Dr. Weisman, in the exchange that 
you had with Mr. Towns talking about the savings for every 
dollar spent, $7 savings and whatnot, if only we could get the 
Congressional Budget Office to score this legislation 
accordingly and take that into consideration. But they don't. 
They charge us for that one dollar, but they won't give us the 
benefit of the $7 or benefit of anything. They won't give us 
the benefit of the 70 cents or 50 cents or $2 or whatever. That 
is really much of the problem we have up here. I suppose they 
are doing their job as they are chartered to do it, but that is 
so frustrating.
    Preventive health care, for instance, and all of these 
things that you know darn well are going to save money 
ultimately, but you can't get any credit for it. That is part 
of the world that we live in.
    Well, Mackenzie, and Lieutenant Mahr, Mr. Pierce, Dr. 
Kattan, Dr. Weisman, thank you again for being so patient. 
Thank you for being here. You have been a tremendous help. We 
have a tough job here because something new pops up all the 
time. We just have to do the best that we can. Without you we 
couldn't even address some of these problems.
    Dr. Kattan, you owe us some information regarding your 
national or your Federal asthma plan. We may have and 
ordinarily do have questions for the rest of you that we would 
submit to you in writing and we would hope that you would in a 
reasonable period of time respond to them. Thank you very much.
    Yes, Mr. Towns. Don't wave that gun around. Why don't you--
--
    Mr. Towns. Mr. Chairman, I really hope that this committee, 
that every member would join me in trying to address the 
handgun situation in this Nation. The toy guns, I think that 
when we look at health care, you cannot ignore the fact that a 
lot of youngsters end up shot, end up in the emergency rooms, 
end up in the hospital beds as a result of walking around with 
a toy gun. I think when we talk about saving, economizing, 
talking about our health care system, we need to look at the 
total situation. I am hoping that your comprehensive bill will 
also include----
    Mr. Bilirakis. I am not sure whether or not that is within 
our jurisdiction. I will tell you I have a daughter-in-law who 
will not allow a toy gun in the house. But again, the 
jurisdictions are part of the--do a 1-minute. That he might do, 
a 1-minute.
    Have you done a 1-minute on that subject?
    Mr. Towns. I am going to do a 5-minutes, an hour, anything 
else I can do, Mr. Chairman, because I am committed to this. I 
have seen youngsters lose their lives as a result of the 
handguns.
    Mr. Bilirakis. Thanks again so much. This hearing is 
adjourned.
    [Whereupon, at 5:53 p.m., the subcommittee was adjourned.]
