[Senate Hearing 105-536]
[From the U.S. Government Publishing Office]


                                                        S. Hrg. 105-536

 
          RESEARCH ON NEUROLOGICAL AND COMMUNICATION DISORDERS

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

                                HEARING

                                before a

                          SUBCOMMITTEE OF THE

            COMMITTEE ON APPROPRIATIONS UNITED STATES SENATE

                       ONE HUNDRED FIFTH CONGRESS

                             FIRST SESSION

                               __________

                            SPECIAL HEARING

                               __________

         Printed for the use of the Committee on Appropriations


 Available via the World Wide Web: http://www.access.gpo.gov/congress/
                                 senate

                                 ______


                    U.S. GOVERNMENT PRINTING OFFICE
44-085 cc                   WASHINGTON : 1998

_______________________________________________________________________
            For sale by the U.S. Government Printing Office
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                                 20402
                           ISBN 0-16-057176-6





                      COMMITTEE ON APPROPRIATIONS

                     TED STEVENS, Alaska, Chairman
THAD COCHRAN, Mississippi            ROBERT C. BYRD, West Virginia
ARLEN SPECTER, Pennsylvania          DANIEL K. INOUYE, Hawaii
PETE V. DOMENICI, New Mexico         ERNEST F. HOLLINGS, South Carolina
CHRISTOPHER S. BOND, Missouri        PATRICK J. LEAHY, Vermont
SLADE GORTON, Washington             DALE BUMPERS, Arkansas
MITCH McCONNELL, Kentucky            FRANK R. LAUTENBERG, New Jersey
CONRAD BURNS, Montana                TOM HARKIN, Iowa
RICHARD C. SHELBY, Alabama           BARBARA A. MIKULSKI, Maryland
JUDD GREGG, New Hampshire            HARRY REID, Nevada
ROBERT F. BENNETT, Utah              HERB KOHL, Wisconsin
BEN NIGHTHORSE CAMPBELL, Colorado    PATTY MURRAY, Washington
LARRY CRAIG, Idaho                   BYRON DORGAN, North Dakota
LAUCH FAIRCLOTH, North Carolina      BARBARA BOXER, California
KAY BAILEY HUTCHISON, Texas
                   Steven J. Cortese, Staff Director
                 Lisa Sutherland, Deputy Staff Director
               James H. English, Minority Staff Director
                                 ------                                

 Subcommittee on Departments of Labor, Health and Human Services, and 
                    Education, and Related Agencies

                 ARLEN SPECTER, Pennsylvania, Chairman
THAD COCHRAN, Mississippi            TOM HARKIN, Iowa
SLADE GORTON, Washington             ERNEST F. HOLLINGS, South Carolina
CHRISTOPHER S. BOND, Missouri        DANIEL K. INOUYE, Hawaii
JUDD GREGG, New Hampshire            DALE BUMPERS, Arkansas
LAUCH FAIRCLOTH, North Carolina      HARRY REID, Nevada
LARRY E. CRAIG, Idaho                HERB KOHL, Wisconsin
KAY BAILEY HUTCHISON, Texas          PATTY MURRAY, Washington
                      Majority Professional Staff
                  Craig A. Higgins and Bettilou Taylor

                      Minority Professional Staff
                              Marsha Simon

                         Administrative Support
                              Jim Sourwine


                            C O N T E N T S

                              ----------                              
                                                                   Page
Opening remarks of Senator Arlen Specter.........................     1
Opening remarks of Senator Tom Harkin............................     3
Opening remarks of Senator Larry Craig...........................     4
    Prepared statement...........................................     5
Prepared statement of Senator Lauch Faircloth....................     6
Statement of Christopher Reeve, actor............................     6
    Prepared statement...........................................    10
Prognosis for the future.........................................    12
Statement of Geraldine Dietz Fox, president, National 
  Organization for Hearing Research..............................    16
    Prepared statement...........................................    18
Statement of Dr. Joseph Miller, director, Kresge Hearing Research 
  Institute, University of Michigan, professor of communications 
  disorders, professor of otolaryngology.........................    20
    Prepared statement...........................................    21
Statement of Caitlin Parton, student, Trevor Day School, New 
  York, NY.......................................................    23
  


          RESEARCH ON NEUROLOGICAL AND COMMUNICATION DISORDERS

                              ----------                              


                         THURSDAY, JUNE 5, 1997

                           U.S. Senate,    
    Subcommittee on Labor, Health and Human
     Services, and Education, and Related Agencies,
                               Committee on Appropriations,
                                                    Washington, DC.
    The subcommittee met at 10:03 a.m., in room SD-192, Dirksen 
Senate Office Building, Hon. Arlen Specter (chairman) 
presiding.
    Present: Senators Specter, Craig, Faircloth, and Harkin.

                       NONDEPARTMENTAL WITNESSES

STATEMENT OF CHRISTOPHER REEVE, ACTOR
ACCOMPANIED BY DANA REEVE


                OPENING REMARKS OF SENATOR ARLEN SPECTER


    Senator Specter. The hearing of the Appropriations 
Subcommittee on Labor, Health, Human Services and Education 
will now proceed. Today's hearing will focus on two special 
lines of NIH inquiry, on spinal cord injury and on deafness.
    We are privileged to have with us today a distinguished 
American, Mr. Christopher Reeve, his wife Dana and his 
associates. Mr. Reeve is well known for his epic roles in 
``Superman'' as well as other distinguished theatrical 
accomplishments and for a very tragic accident and injury where 
he sustained the severance of his spinal cord in a horseback 
riding incident.
    Mr. Reeve has become a leading spokesperson for medical 
research generally and more particularly on the spinal cord 
issue.
    Last week the subcommittee held a hearing that centered 
around the National Cancer Act, the 25th anniversary, in Los 
Angeles, and it has been our experience that when theatrical 
personalities speak out there is very considerable public 
attention to these issues. That happens to be a fact of life. 
When Hollywood speaks, the world listens. When Washington 
speaks the world frequently snoozes. And to get the kind of 
funding necessary to deal with these serious problems, it has 
become a practice for our hearings to call upon people who have 
had real life experiences, where there will be a tremendous 
amount of public interest.
    There has been tremendous public interest and concern 
watching Mr. Reeve's recovery, which is very pronounced.
    We had a hearing several months ago. We had many Senators 
join us in the Capitol. And Mr. Reeve was in town again today 
and we thought we would utilize this opportunity to get an 
update on his condition and again to focus attention on the 
need for funding for spinal cord research and for other NIH 
research, specifically for the deaf.
    This hearing is particularly timely because we are about to 
consider the NIH budget. We have those hearings scheduled next 
week. There has been great interest in increasing the NIH 
funding in the Congress, but a good bit of that interest has 
been more theoretical than real, I must tell you. We have that 
illustrated in the budget resolution 2 weeks ago, where a 
sense-of-the-Senate resolution was passed unanimously, 98 to 
nothing, to increase funding for NIH by $2 billion.
    The only problem with a resolution of that sort is it is 
simply an expression of the Senate's druthers and it does not 
mean a thing in terms of dollars. Druthers do not make dollars.
    Senator Harkin and I then offered an amendment which would 
have added $1.1 billion to NIH funding with a specific cut, and 
we proposed a four-tenths of 1 percent cut on nondefense 
discretionary spending, which could have been accommodated out 
of administrative costs and we think fairly easily done. That 
amendment was defeated 63 to 37.
    We offered that amendment for a number of reasons. One was 
so that we would have real dollars to work with. The second 
reason was so that when various people came to see us who 
wanted to know where their share was of the $2 billion, we 
could tell them that there was no $2 billion. People have a 
hard time understanding Washington doublespeak: Sense-of-the-
Senate resolution, $2 billion--no money.
    So that is why we are going to make a full-court press to 
turn the druthers into dollars. This subcommittee has set a 
target of a 7.5-percent increase, or $952 million, this year. 
The target which has been suggested is to double NIH funding 
over 5 years. Well, that is about 20 percent a year and that 
would cost $2.5 billion, which many of us would like to see. 
But the reality, candidly, is not present.
    Now, that has led Senator Harkin and myself to introduce 
the National Fund for Health Research Act, which would require 
each health plan to contribute 1 percent of all health premiums 
received to the Federal Treasury, which would create an 
additional pool of some $6 billion. This is tough because, it 
is a mandate or a tax that is hard to get done.
    But it is my sense that this would be a good investment for 
the insurance industry because it would produce research which 
would save money on spinal cord injuries. There are 10,000 
Americans who incur paralyzing, traumatic injury each year to 
their spinal cords, and there are about 200,000 Americans who 
live with the consequences of spinal cord injuries. Caring for 
these people costs $5 billion annually.
    There are many analyses and studies supporting the 
conclusion that it would be cost effective to have more money 
in research. We hope to persuade the insurance companies of the 
logic of our position or, in the absence of that, to persuade 
the Congress and the President that it is something that ought 
to be done as a matter of sound public policy.
    I am pleased now to yield to my distinguished colleague, 
the ranking member, Senator Harkin.


                 OPENING REMARKS OF SENATOR TOM HARKIN


    Senator Harkin. Thank you, Chairman Specter. I do not know 
that I can add much to what you have just said, but to thank 
you for your leadership, to welcome our distinguished witnesses 
being here this morning.
    Again, to Christopher Reeve, I just want to say thank you 
for serving as an eloquent advocate for improving people's 
lives by investing in medical research. Superman may have been 
science fiction, but the benefits from medical research are 
science fact. You are an eloquent spokesman for that.
    Preventing strokes and slowing the progression of 
Alzheimer's, better and more effective treatments for spinal 
cord injuries, that is not Hollywood fantasy. It is some of the 
real life progress that is being made today in research 
institutes and laboratories and hospitals around the country.
    I might also add that I too have a very personal interest 
in this. My nephew Kelly at the age of 19 years of age had an 
accident and he has been quadriplegic since, and that has been 
just about 20 years ago. As I have watched his progress and his 
difficulties, it has propelled me to do whatever I can to get 
more research into this area because I know there are 
breakthroughs there and I know there are things that can be 
done. We have seen them.
    So again, we are on the brink of this, but we have got to 
invest in it.
    Senator Specter just mentioned, the other day the Senate 
voted 98 to nothing to double funding for NIH. The next day 
Senator Specter offered an amendment to put the money where our 
mouths were and we lost it. Barely one-third of the Senate 
voted for it. One day we voted to double it--sense of the 
Senate, nice. The next day, to put the hard money there: I am 
sorry, we could not get that done.
    So again, when we look at this--and I have often made the 
analogy, and I know, Christopher, I have talked to you about 
this and I know my colleagues have heard me say this many 
times--finding the cures and more cost effective treatments, it 
is like you have got 10 doors that are closed. Basic research, 
it is like you have got 10 doors that are closed, and you do 
not know behind which door may lie the answer. If you look 
behind one door, you have got a 10-percent chance of finding 
that answer.
    Well, right now we fund about 25 percent of the peer-
reviewed and accepted grant proposals at NIH. That means we can 
look behind door No. 1, but doors No. 2, No. 3, and No. 4 are 
closed. Maybe there is a cure for breast cancer behind door No. 
2, or more effective treatments for Alzheimer's behind door No. 
3, or better intervention for spinal injury and cures for 
spinal cord injury behind door No. 4. But we do not know, 
because we are not committing the resources to unlock those 
doors.
    So I guess what I am saying, again, is that the budget 
agreement with the President makes it very clear, and I think 
the vote of the Senate the other day makes it very clear, that 
the only way we are going to devote the resources that we need 
and to keep from robbing Peter to pay Paul is by going outside 
the regular spending process that we have.
    As Senator Specter said, the budget resolution calls for 
$24.2 billion in discretionary health spending in the year 
2002. That includes all of NIH, all of the Center for Disease 
Control, all the community health centers, all the Older 
Americans Act programs, drug treatment, drug prevention, health 
professional training, maternal and child health care, and on 
and on. That adds up to $24.2 billion.
    If we doubled funding for NIH, as this body has voted to 
do, that would cost $26 billion in 2002. In other words, that 
is $2 billion more than our entire function is allotted under 
the budget. So even if you eliminated all the funding for 
breast cancer screening, Meals on Wheels for seniors, drug 
treatment, all of that, we still would be $2 billion short of 
meeting the goal that the Senate wanted to have, to double NIH 
funding.
    So the only way we are going to get it is to go outside. We 
need another mechanism and that is why, as Senator Specter 
said, we have supported the National Fund for Health Research 
Act, that both Senator Hatfield and I worked on for several 
years and now Senator Specter, who was a cosponsor of it in the 
past, has now taken up the lead on his side, as I have on my 
side.
    One dollar. For every dollar that we spend on health care 
in this country, all we are asking for is just simply 1 penny, 
1 penny. You spend a dollar on Blue Cross-Blue Shield or Aetna 
or Prudential or whatever your HMO may be, not 1 cent of that 
money goes for medical research, not 1 single penny. I think it 
is unconscionable and it borders on being criminal that we are 
spending $700 billion a year this year in medical insurance 
payments and not even 1 penny is going for medical research. 
That is what we have to do.
    If we can get that accomplished, we can meet these goals. 
If we can get that accomplished, we can open the doors No. 2, 
No. 3, and No. 4, and we can find the preventions and the cures 
that we need.
    I hate to be so passionate about it, but I have had it up 
to here with everyone voting to double NIH funding in the 
abstract, but when it comes down to real money and we offer the 
amendment that Senator Specter did, everyone votes no. It is 
time that we have to look behind the normal resources that we 
have here.
    Thank you very much, Mr. Chairman.
    Senator Specter. Thank you very much, Senator Harkin.
    Senator Craig, would you care to make an opening statement.


               OPENING REMARKS OF SENATOR LARRY E. CRAIG


    Senator Craig. Mr. Chairman, let me put my full statement 
in the record.
    Senator Specter. Without objection, it will be placed in 
the record.
    Senator Craig. Mr. Chairman, let me recognize and welcome 
Mr. Reeve before our committee. I think, Mr. Reeve, the world 
has watched you with compassion, but also with pride, since the 
time of your accident in Virginia forward to become a very loud 
and gallant spokesperson for spinal cord injury.
    I suspect nearly all of us know someone or have someone in 
our family, as I do, who has experienced a situation that left 
them paralyzed and in a wheelchair, then to try to lead on with 
a life that they had expected to lead, and it becomes very, 
very difficult.
    You have heard both our chairman and our ranking member 
talk of the difficulty of priorities here with limited dollars. 
We spend a great amount of money in medical research and it is 
never enough. Your ability to speak out as you have allows us 
to focus and to prioritize. There is a great amount of money 
being spent in a variety of areas. Maybe some of it ought to be 
relocated, instead of added to.
    At a time when our Nation speaks for a balanced budget and 
fiscal responsibility, it is our job here to establish those 
priorities, and I think when we talk of the will of the Senate 
or the Congress, it is in that context of striking that. So we 
respond to our publics, and when our publics are aware and 
understand the importance then we can get a good many things 
done.


                           PREPARED STATEMENT


    You add to that awareness. And there is no question today 
that an understanding of and appreciation for the problems of 
spinal cord injury and therefore a refocusing of the public's 
interest is largely due to your effort. So you are to be 
congratulated. We are pleased you are with us and we look 
forward to your testimony.
    Senator Specter. Thank you very much, Senator Craig.
    [The statement follows:]

               Prepared Statement of Senator Larry Craig

    Mr. Chairman, I would like to thank you for holding this 
hearing today to spotlight medical research funding for 
nuerological disorders and disabilities. I would also like to 
thank all of our witnesses here today for sharing their 
insights and personal experiences with us.
    Communication is the essential element of interaction in 
our society. It greatly impacts our daily lives and profoundly 
affects our future. Funding for the National Institute on 
Deafness and Other Communication Disorders [NIDCD] is important 
because of the significant strides their research has already 
made. NIDCD represents 46 million Americans with diseases and 
disorders of human communication. In the last several years, 
NIDCD has made tremendous headway in the prevention and 
treatment of hearing and communication disorders. As a result 
of support for the NIDCD and new findings from their studies, a 
whole new field and strategy of research in the hearing 
sciences has been created. It is so very important that we 
continue this trend.
    Funding for biomedical research, for all diseases, is 
necessary because medical research is the key to eradicating 
disease and improving the quality of life. The benefits from 
medical research are far-reaching. New discoveries return value 
to patients and their families, as they translate into better 
diagnosis, better treatment, and better prevention of disease. 
It is important that we focus on the need to advance the 
knowledge and practice of medicine through research while 
fostering the practical application of this knowledge to the 
care of patients.
    In addition, the financial costs of disease are staggering, 
both to the individual and to society as a whole in medical 
costs and loss of prodcutivity. The human costs of disease are 
incalculable. Recently Congress and the President negotiated a 
budget deal that will eventually lead us to a balanced budget. 
This will be a difficult challenge, making it more important 
than ever that we get our priorities straight. The testimony of 
our witnesses today will be very helpful in that process of 
priority-setting and goal setting for a shrinking budget.
    Because of the advances that have been made in medical 
research thus far, we should be optimistic about our future. We 
should look at the progress that has been made in all areas of 
research and build on those successes. However, we should also 
be aware of the amount of work that is left to be done. The 
examples used here today on the progress the NIDCD has made 
with their research certainly sheds a promising light on the 
future of medical research.
    Again, I would like to thank the chairman and our panel of 
witnesses here today. The insight you provide will be of great 
assistance to us as we focus our attention on the importance of 
medical research.


               OPENING REMARKS OF SENATOR LAUCH FAIRCLOTH


    Senator Specter. Senator Faircloth, would you care to make 
an opening statement?
    Senator Faircloth. Yes; I have just a very, very brief 
statement, Senator Specter. Thank you, Mr. Chairman. I thank 
you for calling this hearing. I think it is a very good use of 
our time, and I thank Mr. Reeve for being here.
    This type of thing can highlight the need that we have for 
research. As you mentioned, Mr. Chairman, we spend some $5 
billion a year for neurological treatment and the care of 
neurological injuries, including spinal, and money spent in 
research in this area could be well spent.
    I had the opportunity of working with a very good friend 
who in fact was a father-in-law, and he gave, established a 
neurological center at Duke known as Brian Neurological 
Research Center, and they have made great headway on 
Alzheimer's and other neurological disorders. It was a pleasure 
to watch that come to fruition and what he did there.
    I am not noted in the Congress as one of its advocates of 
big spending, but I think that this is an opportunity to really 
save money and money invested in this field, in this area, will 
down the road really amount to a major savings for the people 
of the country.
    I thank you for being with us, Mr. Reeve, and I thank you, 
Mr. Chairman.
    Senator Specter. Thank you, Senator Faircloth.


                 SUMMARY STATEMENT OF CHRISTOPHER REEVE


    Well, again, Mr. Reeve, welcome, and we look forward to 
your testimony.
    Mr. Reeve. Thank you very much. Thank you, Mr. Chairman and 
members of the committee, for inviting me to testify today. It 
is a great privilege.
    About 57 years ago there was someone struck by a then-
incurable disease and he spoke these prophetic words. He said:

    We cannot be a strong nation unless we are a healthy 
nation. So we must recruit not only men, women, and materials, 
but also knowledge and science, in the service of national 
strength.

    Well, those are the words of President Franklin Roosevelt 
taken from his address at the dedication of the National 
Institutes of Health back in October 1940. It is remarkable 
that, even as war was raging in Europe and as the United States 
stood on the brink of entering that conflict, President 
Roosevelt had the foresight to recognize the importance of our 
Nation's investment in medical research to its national 
security.
    So the question today is whether our current President and 
our Congress have the vision and the wisdom to heed the words 
of Franklin Roosevelt and recognize the vital role played by 
medical research in the economic and health security of our 
Nation.
    I firmly believe that medical research is the key to 
eliminating disease, reducing human suffering, and reducing 
health care costs. Heart disease and cancer are the two leading 
causes of death among Americans and they constitute nearly one-
fifth of America's health care bill. The cost of Alzheimer's 
disease, which devastates 4 million Americans, currently costs 
our Nation $100 billion every year, and those costs are going 
to increase dramatically as the baby boomers age.
    So the economic cost of disease, not to mention the human 
costs, are truly staggering. Parkinson's disease afflicts 
nearly half a million Americans and it costs our Nation at 
least $6 billion a year. Nearly a quarter million Americans 
live with varying degrees of incapacity due to spinal cord 
injuries and we spend $10 billion annually merely to maintain 
them.
    A half a million Americans suffer strokes every year, which 
cost more than $30 billion for medical treatment, for 
rehabilitation and long-term care as well as lost wages. 
Diabetes, which affects nearly 16 million Americans, costs our 
Nation between $90 billion and $140 billion annually. It is the 
leading cause of blindness, kidney disease, and limb 
amputations.
    So how do we stop the economic and human costs of these 
diseases? The answer is research. When I met with the President 
in May 1996, he stated that the ratio of research to clinical 
results is greater in this country than anywhere else in the 
world. Money spent on research brings practical results that 
absolutely justify the investment. So let us just look at a 
couple of examples.
    NIH-sponsored research has resulted in the identification 
of genetic mutations that cause osteoporosis, Lou Gehrig's 
disease, cystic fibrosis, and Huntington's disease. Effective 
treatment for acute lymphoblastic leukemia [ALL], has been 
developed, and today nearly 80 percent of children who are 
diagnosed with ALL are alive and disease-free after 5 years.
    Because of research, the nature of medicine is changing. We 
are approaching disease at the cellular level. We are targeting 
problems earlier, more specifically, less intrusively, with 
greater success and fewer side effects. Advances in genetics 
will soon let us intervene in disease even before the symptoms 
appear.
    Significant progress is being made in the battle against 
cancer, and as recently as 10 years ago AIDS was a virtual 
death sentence. Now, thanks to research, individuals with 
extremely low T-cell counts are often able to rebuild their 
immune systems because of new protocols developed at the NIH 
and NIH-funded laboratories. Scientists are now talking about 
the possibility of an AIDS vaccine, and just a few years ago 
that would have seemed like science fiction.
    Now, in 1988 a great Swiss neuroscientist, Dr. Martin 
Schwab, discovered two proteins that inhibit growth in damaged 
mammalian spinal cords. That was a revolutionary finding. Until 
then it was believed that the cord's inability to regenerate 
was due to the absence of nerve growth factors. And 2 years 
later, in 1990, Schwab induced nerve regeneration in a rat 
spinal cord by blocking the inhibitory proteins with an 
antibody called IN-1, and with adequate funding he estimates 
that this antibody could be adapted for use in human beings 
within the next 1 to 2 years. That is how fast progress is 
moving.
    Now, when we recall that 10 years ago a spinal cord injury 
was considered to be a hopeless condition, this progress is 
absolutely extraordinary. Similar progress is being made in the 
treatment of Parkinson's multiple sclerosis [MS], stroke, and 
other related diseases because research has led to a greater 
understanding of the complexities of the brain.
    Now, we must not stop this progress because we are 
unwilling to commit enough money to get the job done. It is 
imperative that the public and, more importantly, our elected 
representatives, understand that research today is not 
speculative, it is not a waste of money. It is the only way to 
relieve suffering while helping to save the American economy at 
the same time.
    Making this a reality demands an investment of real 
dollars, funds that just do not fit within the constraint of 
the budget amendment that was passed by Congress this week, 
which proposes in fact to reduce overall health spending by 
$100 million next year and by more than $2 billion over the 
next 5 years. That is why I support Senator Specter's and 
Harkin's proposal to establish a national fund for health 
research, to provide additional funds over and above the annual 
appropriations for the NIH.
    This bill proposes to take 1 penny from each $1 paid in 
insurance premiums, and that would result in as much as a $6 
billion increase a year for the NIH, which would be a 50-
percent raise in the budget.
    Now, some experts say that this bill will never pass 
because of the strength of the insurance lobby. Well, I think 
that recent experience has shown that even the most formidable 
lobbyists cannot derail legislation that has bipartisan and 
public support. Let us look at some examples. The NRA was not 
successful in repealing the ban on assault weapons and they are 
a very powerful lobby.
    The American public watched in disbelief as a dozen tobacco 
company executives testified at a Senate hearing that nicotine 
is not addictive and they denied allegations that nicotine 
levels were being raised in cigarettes in order to increase 
addiction. Well, now we are witnessing the demise of the 
Marlboro Man and Joe Camel. There are lawsuits in virtually 
every State by individuals demanding punitive damages against 
the tobacco companies. And just this week thousands of 
Government workers petitioned the President to ban smoking in 
Government buildings. And I sincerely doubt that the tobacco 
lobby will be able to stop this initiative.
    As you recall, the religious right, led by Pat Robertson, 
Pat Buchanan, the Christian Coalition, tried twice 
unsuccessfully, in 1992 and 1996, to hijack the Republican 
Party, and they failed in both attempts. Here again was a case 
where a supposedly powerful lobby did not succeed in promoting 
their agenda.
    Now, I also know from personal experience as a lobbyist for 
the National Endowment for the Arts that, in spite of 5 years 
of arguing strenuously about the economic benefits of the arts 
in thousands of communities across the Nation and instead of 
mobilizing arts groups from around the country for Arts 
Advocacy Day, in spite of showing statistics that 61 percent of 
the American people believe more money should be spent on 
Federal spending on the arts, we watched in dismay as Congress 
turned a deaf ear and they reduced the NEA budget from $167 
million a year to a hopelessly inadequate $99 million.
    This has resulted in the loss of critical seed money to 
thousands of orchestras, dance companies, theaters, and 
museums. It is not only a serious setback to the quality of 
life in this country, but it is further proof that Congress can 
and does ignore a strong lobby with tremendous grassroots 
support when they so desire.
    Now, I have spoken to executives at several insurance 
companies about this bill and I have been told that their 
profit margin is so small that the donation of 1 percent of 
income is an unreasonable hardship. Well, personally, I find 
this about as credible as the tobacco companies' claim that 
nicotine is not addictive. It is very hard to sympathize with 
insurance companies when you watch a mother in tears on a 
television program begging for a chair so her quadriplegic son 
can take a shower.
    I know in my own case I have been denied coverage for any 
physical therapy below the level of my shoulders, in spite of 
the fact that leading researchers repeatedly stress the 
importance of cardiovascular conditioning and the prevention of 
osteoporosis and muscular atrophy in preparation for the 
functional recovery that spinal cord research will very likely 
achieve in the next few years.
    I will give you another example. I am completely dependent 
on a ventilator to breathe. If this ventilator fails, I am in 
serious trouble. But my insurance company would not pay for a 
second ventilator. I had to pay for it, $3,000, out of my own 
pocket. I am lucky; I can afford that. Many, many people 
cannot. And yet this kind of essential need is routinely 
denied.
    Now, getting back to this piece of legislation, the 
insurance companies see it as a tax, though my question is: Why 
is that unreasonable when the insurance companies are going to 
save so much money in the long run? Research will keep the 
American people healthier and that will result in fewer 
insurance claims.
    We tax oil companies. We use the money to build and 
maintain highways. In New York State, if you win the lottery 
you pay a significant tax which goes to a State fund for 
education. Now, most States have sales taxes which are a major 
source of revenue for a wide variety of programs and services 
that benefit the public.
    Why should not insurance companies be asked to help, be 
asked to help to solve the health care crisis in this country?
    Now, because of advances to date we can save millions of 
lives. Our challenge for the future is not just improving the 
quality of life of those we save, but finding the cures to 
prevent that suffering in the first place. Our scientists are 
on the threshold of major breakthroughs in almost every disease 
or condition that now cause so much hardship for people across 
the country and around the world.


                           PREPARED STATEMENT


    The insurance companies owe it to our families and our 
society to make a small sacrifice which could do so much good. 
And I hope that this excellent piece of legislation, which 
already has tremendous grassroots support, will be enacted 
during this legislative session.
    Thank you very much.
    [The statement follows:]

                Prepared Statement of Christopher Reeve

    Fifty seven years ago, someone struck with a then incurable 
disease spoke these prophetic words: ``We cannot be a strong 
nation unless we are a healthy nation. And so we must recruit 
not only men and women and materials but also knowledge and 
science in the service of national strength.''
    These are the words of President Franklin Roosevelt, taken 
from his address at the dedication of the National Institutes 
of Health in October 1940. It's remarkable that even as war was 
raging in Europe and as the United States stood on the brink of 
entering that conflict, President Roosevelt had the foresight 
to recognize the importance of our nation's investment in 
medical research to its national security.
    The question today is whether our current President and the 
Congress have the vision and wisdom to heed the words of 
Franklin Roosevelt and recognize the vital role played by 
medical research in the economic and health security of our 
nation.
    I firmly believe that medical research is key to 
eliminating disease, reducing human suffering, and reducing 
health care costs. Heart disease and cancer, the two leading 
causes of death among Americans, constitute nearly one-fifth of 
America's health care bill. The costs of Alzheimer's disease--
which devastates four million Americans and currently costs our 
nation $100 billion each year--are expected to increase 
dramatically as baby boomers age.
    The economic costs of disease--not to mention the human 
costs--are truly staggering. Parkinson's disease afflicts 
nearly a half million Americans and costs our nation at least 
$6 billion a year.
    Nearly a quarter million Americans live with varying 
degrees of incapacity due to spinal cord injuries. We spend $10 
billion annually merely to maintain them.
    A half million Americans suffer strokes each year, costing 
more than $30 billion for medical treatment, rehabilitation and 
long-term care, as well as lost wages.
    Diabetes, which afflicts nearly 16 million Americans, costs 
our nation between $90 billion and $140 billion annually and is 
the leading cause of blindness, kidney disease and limb 
amputations.
    How do we stop the economic and human cost of these 
diseases? Research.
    When I met with the President in May of 1996, he stated 
that the ratio of research to clinical results is greater in 
this country than anywhere else in the world. Money spent on 
research brings practical results that absolutely justify the 
investment. Let's look at a few examples.
    NIH-sponsored research has resulted in the identification 
of genetic mutations that cause osteoporosis, Lou Gehrig's 
Disease, cystic fibrosis and Huntington's disease. Effective 
treatment for Acute Lymphoblastic Leukemia (ALL) has been 
developed and today nearly 80 percent of children diagnosed 
with ALL are alive and disease-free after 5 years.
    Because of research, the nature of medicine is changing. We 
are approaching disease at the cellular level. We are targeting 
problems earlier, more specifically, less intrusively, with 
greater success and fewer side effects. Advances in genetics 
will soon let us intervene in disease before symptoms appear.
    Significant progress is being made in the battle against 
cancer. As recently as 10 years ago AIDS was a virtual death 
sentence. Now, thanks to research, individuals with extremely 
low T-cell counts are often able to rebuild their immune 
systems because of new protocols developed at the NIH and NIH 
funded laboratories. Scientists are now talking about the 
possibility of an AIDS vaccine. Just a few years ago that would 
have seemed like science fiction.
    In 1988 Swiss neuroscientist Martin Schwab discovered two 
proteins that inhibit growth in damaged mammalian spinal cords, 
a revolutionary finding. Until then, it was believed that the 
cord's inability to regenerate was due to the absence of nerve 
growth factors. In 1990 Schwab induced nerve regeneration in 
the rat spinal cord by blocking the inhibitory proteins with an 
antibody called IN-1. With adequate funding, it is estimated 
that Schwab's antibody could be adapted for use in humans 
within the next 1-2 years.
    When we recall that 10 years ago a spinal cord injury was 
considered to be a hopeless condition, this progress is truly 
extraordinary. Similar progress is being made in the treatment 
of Parkinson's, MS, Stroke and other related diseases because 
research has led to a greater understanding of the complexities 
of the brain.
    We must not stop this progress because we are unwilling to 
commit enough money to get the job done. It is imperative that 
the public--and more importantly our elected representatives 
understand that research today is not speculative. It is not a 
waste of money. It is the only way to relieve suffering while 
helping to save the American economy at the same time.
    Making this a reality demands an investment of real 
dollars--funds that just don't fit within the constraints of 
the Budget Agreement passed by Congress this week, which 
proposes to reduce overall health spending by $100 million next 
year and by more than $2 billion over the next 5 years.
    That's why I support Senators Specter and Harkin's proposal 
to establish a National Fund for Health Research to provide 
additional funds over and above the annual appropriations for 
the National Institutes of Health. The Spector-Harkin bill 
proposes taking one penny from each dollar paid in insurance 
premiums, which would result in as much as a $6 billion 
increase a year for the NIH.
    Some experts say that this bill will never pass because of 
the strength of the insurance lobby. However recent experience 
has shown that even the most formidable lobbyists cannot derail 
legislation that has bipartisan and public support.
    The NRA was not successful in repealing the ban on assault 
weapons.
    The American public watched in disbelief as a dozen tobacco 
company executives testified at a Senate hearing that nicotine 
is not addictive and denied allegations that nicotine levels 
were being raised in cigarettes in order to increase addiction. 
Now we are witnessing the demise of the ``Marlboro Man'' and 
``Joe Camel''. There are lawsuits in virtually every state by 
individuals demanding punitive damages against the tobacco 
companies. Just this week, thousands of government workers 
petitioned the President to ban smoking in government 
buildings. I sincerely doubt that the tobacco lobby will be 
able to stop this initiative.
    The religious right led by Pat Robertson, Pat Buchanan and 
the Christian Coalition tried twice unsuccessfully (in 1992 and 
1996) to hijack the Republican Party and failed in both 
attempts. Here again, was a case when a supposedly powerful 
lobby did not succeed in promoting their agenda.
    I also know from personal experience as a lobbyist for the 
National Endowment of the Arts, that in spite of five years of 
arguing strenuously about the economic benefits of the arts in 
thousands of communities across the nation, in spite of 
mobilizing arts groups from around the country annually for 
``Arts Advocacy Day'', in spite of showing statistics that 61 
percent of the American people believe more money should be 
spent on Federal funding for the arts; we watched in dismay as 
Congress turned a deaf ear and reduced the NEA budget from $167 
million a year to a hopelessly inadequate $99 million. This has 
resulted in the loss of critical seed money to thousands of 
orchestras, dance companies, theaters and museums. It is not 
only a serious setback to the quality of life in this country, 
but further proof that Congress can and does ignore a strong 
lobby with tremendous grassroots support, when they so desire.
    I have spoken to executives at several insurance companies 
about this bill and have been told that their profit margin is 
so small that the donation of 1 percent of their income is an 
unreasonable hardship. Personally, I find this about as 
credible as the tobacco companies claim that nicotine is not 
addictive. It its hard to sympathize with insurance companies 
when you watch a mother in tears begging for a chair so that 
her quadriplegic son can take a shower. In my own case I have 
been denied coverage for any physical therapy below the level 
of my shoulders in spite of the fact that leading researchers 
repeatedly stress the importance of cardiovascular conditioning 
and the prevention of osteoporosis and muscular atrophy in 
preparation for the functional recovery that spinal cord 
research will very likely achieve within the next few years.
    The insurance companies see this legislation as a tax. My 
question is: why is that unreasonable, particularly when the 
insurance companies would save so much money in the long run. 
Research will keep the American people healthier, resulting in 
fewer insurance claims. We tax oil companies and use the money 
to build and maintain highways. In New York state, if you win 
the lottery, you pay a significant tax which goes to a state 
fund for education. Most states have sales taxes which are a 
major source of revenue for a wide variety of programs and 
services that benefit the public. Why shouldn't insurance 
companies be asked to help solve the health care crisis in this 
country?
    Because of the advances to date, we can save millions of 
lives. Our challenge for the future is not just improving the 
quality of life of those we save, but finding the cures to 
prevent that suffering in the first place.
    Our scientists are on the threshold of major breakthroughs 
in almost every disease or condition that now cause so much 
hardship for people across the country and around the world. 
The insurance companies owe it to our families and our society 
to make a small sacrifice which can do so much good. I hope 
that this excellent piece of legislation which already has 
tremendous grassroots support will be enacted during this 
legislative session.
    Thank you very much.


                        PROGNOSIS FOR THE FUTURE


    Senator Specter. Thank you very much, Mr. Reeve.
    We will now proceed with a 5-minute round on the panel.
    Mr. Reeve, we are delighted to see you progressing and 
doing so well. Could you give us a short summary of the 
progress which you have made up to date and what your doctors' 
prognosis is for the future, please?
    Mr. Reeve. Well, the prognosis for the future is going to 
be very dependent, again, on how research progresses. But I in 
the last few months have achieved sensation all the way down 
the spinal cord. This is a very encouraging sign because it 
means that the injury is incomplete and it had previously been 
thought to be complete, and that is a very significant piece of 
news for me and for my family.
    Senator Specter. You have made a reference to the nerve 
regeneration in rats, and it is your hope, expectation, that 
that can be duplicated in humans, that that could pose a cure 
for your paralysis?
    Mr. Reeve. Yes; you see, the most encouraging thing is that 
not only did Dr. Schwab achieve regeneration in rats in his 
laboratory in Zurich, but Dr. Weiss Young at the NYU Medical 
Center in New York has achieved the same thing. So two 
scientists working in different parts of the world.
    Senator Specter. Do you have a sense for how far away the 
science may be in the nerve regeneration in humans if there is 
adequate funding?
    Mr. Reeve. With adequate funding, within 1 to 2 years, and 
that is absolutely staggering progress. Recently I watched a 
video of the rats in Dr. Young's laboratory, and they were 
placed in a fairly large dish----
    Senator Specter. So with adequate funding you think that 
there could be regeneration of the nerves in humans which would 
solve your spinal cord injury and your paralysis?
    Mr. Reeve. That would be the beginning of clinical trials 
in humans, and what would happen is that--you see, the antibody 
that works in rats has to be modified to work in a human model, 
and that will take another year or so in order to accomplish. 
We have to be careful that there are not excessive levels of 
toxicity and those kinds of things.
    Senator Specter. On the best case scenario, how long do you 
think it might be where you could walk again and resume your 
Superman career?
    Mr. Reeve. Well, let us walk before we fly. But I would say 
that with adequate funding, with bringing new people into the 
field, continuing their clinical trials that they are on the 
brink of doing now, that we are looking at probably 4 to 5 
years I could be up on my feet again, and so could millions of 
Americans.
    Senator Specter. Mr. Reeve, I ask that question because 
many people have followed your career. They watched you fly, 
they watched you fall, and they would like to see you walk 
again as a preliminary to flying again. And I ask you on the 
best case scenario because people will see what Christopher 
Reeve does and will say, I can do that too if the opportunity 
is present.
    That is the great value of a role model, and it will also 
have an impact on our colleagues in the Congress to provide the 
kind of funding which would enable scientific research to 
enable you to walk first and then to fly. So that is why I ask 
you about the best case scenario, because your words will be 
heard by millions of people who have similar problems.
    Mr. Reeve. The main thing to remember is that these 
breakthroughs that Dr. Young and Dr. Schwab and others have 
done is really defying millions of years of evolution, because 
evolution provided that the spinal cord could not regenerate 
and that was always the common wisdom, that the peripheral 
nerves can regenerate but not the nerves in the spinal cord. 
And the identification of this antibody, the identification of 
this protein, is an incredible breakthrough.
    What can happen is, as the antibody is developed the 
protein will be effectively knocked out and then regeneration 
will occur. The question is now will the nerves know where to 
go. And the evidence seems to be that they have a sense of 
where they belong. So we are talking about building a 
relatively small bridge and then, provided you keep your body 
in shape, you should be able to regain significant functional 
recovery within a short period of time.
    Senator Specter. Well, one more bridge for the future.
    Mr. Reeve. That is right.
    Senator Specter. One more bridge for the future, and if we 
can succeed on spinal cord injury and if Superman can fly 
again, that translates into hope for cancer victims, for those 
who suffer from heart ailments, for those who suffer from 
Alzheimer's, cystic fibrosis, hearing disability, and many 
other lines.
    So we salute you for your good work and, Mr. Reeve, we 
thank you for being here, and we will work with you.
    Senator Harkin.
    Senator Harkin. Thank you very much, Mr. Chairman.
    Again, Mr. Reeve, thank you very much again for a very 
eloquent statement, and thank you for speaking truth to power, 
as they say. The insurance companies need to hear this, and 
they are very powerful. The people that you are speaking to 
here are also very powerful and they need to hear that truth. 
The truth is, is that we are not investing in medical research.
    I know it sounds like a lot of money when we say we are 
putting about $13 billion this year into medical research with 
NIH, but I always point out to my friends, my friends and foes 
alike, that in the last 5 years we have spent more on military 
research and development in 5 years than we have on all 
biomedical research since the turn of the century. We have 
smart missiles and we have smart bombs, and thank God they help 
defend our country. But it is research that got us here.
    The Defense Department right now is spending about 15 
percent of every $1 on research. In medicine we do not even 
spend 1 penny out of every $1 on research, and that is why I 
think it is criminal and that is why I appreciate what you are 
doing.
    We have been on this for some time. There is broad-based 
support for the concept that Senator Specter and I are trying 
to get through. Almost every disease-related group in America, 
research institutions, the private sector, private 
corporations, but we cannot seem to get the breakthrough. I do 
not know if maybe we are not communicating it well.
    If you have any thoughts on what message would resonate 
with Americans, how do we get the American public to help us in 
this effort. We have got to get that grassroots out there 
demanding this. And as you say, if they demand it, I do not 
care how powerful the insurance companies are, we will roll 
over them. But we have got to get the public to understand what 
we are talking about.
    Quite frankly, I think I have failed in that regard. I just 
do not think I have been able to communicate that adequately to 
the public. If you have any advice for me, I am looking for it.
    Mr. Reeve. In my opinion what makes the greatest difference 
is when the American people realize that these diseases and 
afflictions affect the entire American family, rather than just 
a small segment. If you take the case of AIDS, for example, 
back in the early eighties it was considered to be a disease 
that afflicted a very small segment of the population, and then 
gradually, when a young woman contracted the AIDS virus from a 
dentist, when children began to die of AIDS, when Rock Hudson 
and Elizabeth Glazer, public figures, when it began to resonate 
across the country that this is something that is robbing many, 
many Americans, then people take notice, and they said: Wait a 
minute, it is about us; it is not about them; it is about the 
entire American family.
    And what is happening now is these diseases of the brain, 
which I call inner space--there is only one degree of 
separation. Any of us in this room can talk about a relative or 
a close friend who has one of these conditions. And as we live 
longer and as the baby boomers age, it is going to get worse 
and worse.
    But the hopeful sign is that as people realize that people 
close to them are suffering, then they become more motivated to 
do something about it. People tend to respond when there is an 
emotional and psychological connection to a condition, and then 
they are willing to speak up and put pressure on Capitol Hill 
and put pressure on various companies and on the private sector 
to do something about it.
    So what I would say is we have to remind people that it is 
not about others; it is about ourselves and the entire American 
family. That word is beginning to get out as people recognize 
that the suffering is so widespread and it is a huge human cost 
as well as a huge economic cost to the country. By reinforcing 
that message, I think you are going to get more of a demand for 
action, more of a demand for a response, and that will lead to 
more dollars being pointed in the right direction.
    Senator Harkin. Well, I appreciate that. And again, I 
cannot tell you how much we are thankful for your help and your 
leadership in this area.
    I might also add that your influence has extended widely 
throughout the country on this issue. As I mentioned in my 
opening statement, my nephew Kelly McQuaid has been 
quadriplegic, as I said, now for almost 20 years as a result of 
a tragic accident, as you had. In my last communication with 
him he wanted to know--I told him that you were going to be 
testifying here and he wanted to know if you had any new 
information, because he also knows that you have been leading 
this, and he wanted to know if you had any new information on 
breakthroughs.
    What you have just said here about the new protein, I did 
not know about. If I could get some of that information from 
you, I would love to be able to send that on to my nephew.
    Mr. Reeve. Absolutely.
    Senator Harkin. Because he has been fighting for 20 years 
on this, and he has never given up. He has never given up hope, 
and you have given him new hope, and I appreciate that.
    Mr. Reeve. On my left here is Susan Howley, who is the 
research director of the American Paralysis Association, and 
she can provide you with all of that information. What we are 
doing at the American Paralysis Association is bringing 
scientists together from all over the world and getting them to 
work together, and that is going to make all the difference.
    Senator Harkin. Thank you again very much.
    Senator Specter. Thank you, Senator Harkin.
    Senator Craig.
    Senator Craig. Mr. Chairman, thank you.
    Christopher, your eloquence and your passion will advance 
the cause of research in neurological disorders, spinal cord 
injury, more than anything that can be done. And I say that 
because, while lobbyists and lobbies are a powerful force in 
this city, they are not as powerful as the American people when 
that body makes up its mind.
    You referenced the National Endowment for the Arts and the 
decision on the part of Congress. That was, as you know, a 
hard-fought decision. I voted to cut funding and the reason I 
did was because public dollars are precious dollars and they 
were spending money in categories that were not generally 
believed to be acceptable by the public. When they decided they 
would change, I once again began to support it and I voted for 
the National Endowment last year again and the year before.
    What I am suggesting is that when the public is well 
informed they can also cause the Congress to do things, and 
they felt they were informed. At least my public reacted, and 
then my public, once we had changed or the National Endowment 
agreed to change, my public accepted my vote again in support, 
because many of the communities in my State--as you reflected, 
communities across the country--were the beneficiaries of those 
kinds of dollars.
    So I encourage you to continue and I am sure you will, 
because this particular illness or injury that a good many 
Americans experience now has a marvelous spokesperson. I do not 
believe it had that before, and that can go a great long ways 
in causing us to do and causing the public to react in ways 
that will cause us to move in the appropriate directions.
    Thank you.
    Senator Specter. Thank you very much, Senator Craig.
    We are very appreciative of your appearance here, Mr. 
Reeve, and we will work with you, and we appreciate your 
helping us with the other Members of Congress and with the 
insurance industry.
    Senator Harkin. Might I ask one followup question?
    Senator Specter. Senator Harkin has one quick question.
    Senator Harkin. One quick question. I do not want to put 
anyone on the spot, but I always believe in dealing openly and 
honestly with people. Were there any promises or overtures, 
promises, commitments, made to you by the President to increase 
funding for spinal cord research last year?
    Mr. Reeve. Yes; when we met in May 1996 he told me that he 
would commit an additional $10 million in fiscal 1996-97 
specifically for spinal cord research, and I spoke recently 
with Dr. Varmas at NIH and that money already is being spent.
    Senator Harkin. An additional $10 million?
    Mr. Reeve. An additional $10 million, above the $40 million 
which is normally spent. So that additional $10 million is 
being used now for additional grants and symposiums on spinal 
cord injury, but mostly on funding for more grants. What we 
really need to do is bring new graduates of our medical 
schools, new M.D.-Ph.D.'s, into the field, and the way we do it 
is by making enough money available so that the research can 
continue and they will want to be part of it.
    Research is a tough life for someone who is coming out of 
medical school. They have got to repay their loans, they have 
got to make a living. But if we really show them that they can 
participate in breakthroughs of major proportions and that they 
will be able to make a living doing it, then we are going to 
have new intelligence, new talent, brought to the field, and 
that is what we really need to continue the progress.
    So not only will this money fund existing scientists, but 
it will open the field to new researchers, and that will make a 
tremendous difference.
    Senator Specter. Before we proceed to our next panel, we 
are going to take a 2-minute recess.
    Thank you very much, Mr. Reeve.
    Mr. Reeve. Thank you.
    [A brief recess was taken.]

STATEMENT OF GERALDINE DIETZ FOX, PRESIDENT, NATIONAL 
            ORGANIZATION FOR HEARING RESEARCH
    Senator Specter. May we now call our next witnesses: Ms. 
Geraldine Fox, Dr. Josef Miller, and Ms. Caitlin Parton. Ms. 
Geraldine Fox, president of the National Organization for 
Hearing Research, former chairman of the National Institute on 
Deafness and Other Communication Disorders, former member of 
the Deafness Research Foundation Board of Directors, and a 
long-time advocate for increased funding for deafness research, 
she really has been responsible for the establishment of the 
National Institute on Deafness and Other Communication 
Disorders.
    She has received numerous awards and citations recognizing 
her work and commitment to this cause and has been my personal 
friend for some three decades.
    Ms. Fox, welcome and we look forward to your testimony.
    Ms. Fox. Thank you very much, Mr. Chairman Specter and 
Senator Harkin, for the opportunity to appear before you and 
the members of this subcommittee today on behalf of expanded 
funding for research and training at the National Institute on 
Deafness and Other Communication Disorders. It is a privilege 
to be able to thank you for your continuing attention to these 
issues.
    Dr. Joe Miller in a few minutes will tell you of the 
tremendous progress that has been made in the years since the 
establishment of NIDCD. I believe this is because the 
legislators have consistently shown their understanding that 
research not only enables people with communication disorders 
to lead more meaningful lives, but also it saves the Government 
money. The generosity of the Congress has fueled the 
Institute's growth and expansion since its inception and has 
thus been a loyal friend to the communicatively impaired. We 
are extremely grateful for your dedication to improving the 
quality of life for this segment of society.
    I am entering into the testimony a letter from Actress 
Nanette Fabray, who has long been a supporter of research. Miss 
Fabray experienced the difficulties and hardship of hearing 
impairment firsthand before surgery cured her otosclerosis. 
Nanette wanted to be with us today, but she is appearing in a 
play in New York.
    Many other famous people have been candid about their own 
or someone in their family's communication disorder, people 
such as Louise Fletcher, the Academy Award-winning actress 
whose parents were deaf; rock performers, Pete Townsend of the 
``Who and Lars Ulrich of Metallica,'' who both suffer because 
of their own loud music and now wear hearing protectors when 
they play; deaf actress Marlee Matlin; the golfer Arnold 
Palmer; dress designer Gianni Versace, who mentioned his 
cancerous ear tumor operation in a recent issue of Vanity Fair 
magazine; singer-actress Barbara Streisand, who revealed her 
problem with tinnitus in Vanity Fair magazine; deaf Miss 
America Heather Whitestone; Detroit Tigers baseball player 
Curtis Pride; our own Pennsylvania Governor Tom Ridge; Marilyn 
Quayle, wife of the former Vice President, has a deaf sister; 
Senator Harris Wofford, now head of the Corporation of National 
Service, grandmother was deaf and grandfather was educated as a 
tutor for the deaf; and Beverly Sills, whose daughter was 
hearing impaired.
    Lionel Hampton, who suffers from tinnitus, has established 
the Lionel Hampton Ear Research Foundation. And Ray Charles, 
who because of blindness strongly depends upon his hearing to 
connect him to the world, he has established his own Robinson 
Hearing Foundation Research Center.
    This short list of recognizable names suggests how basic 
communication disorders are in our society. In fact, according 
to the NIDCD, communication disorders affect more than 46 
million Americans of all ages, races, gender, and socioeconomic 
levels. As the American population ages and as the survival 
rate of low birthweight babies improves, the number of 
individuals afflicted with or experiencing communication 
disorders is expected to increase.
    These disorders can impose a serious toll on the afflicted. 
Depending on the age at which a person is stricken, they can 
negatively impact a person's emotional, social, economic, 
educational, and cognitive development. The cost of these 
disorders in suffering, unfilled potential, and economic 
factors is incalculable.
    Additional and increased Federal support is required, not 
just to maintain the level of progress, but to strive for even 
more substantial achievements in this field. I would like to 
urge the committee that enlarging NIH funding will not only 
increase NIDCD's funding for research and training, but it is 
also truly justifiable and in the best interests of the 
country.
    I was fascinated to read in a May 15 New York Times 
editorial concerning a National Science Foundation study that--

    Research funded by Government and nonprofit agencies 
accounts for over 70 percent of the scientific papers in the 
study sample of recent patentholders. Spending by the 
Government on research and development contributes perhaps half 
of the growth in American living standards. Each dollar spent 
on basic research permanently adds 50 cents or more each year 
to the national output, an impact that is many times larger 
than the permanent gains from increases in ordinary business 
investments. This latest study suggests that Government and 
university-based research packed the biggest wallop.

                           PREPARED STATEMENT

    I see a red light, but I do want to tell you that we at 
NIDCD will uphold our tradition and mandate to fund only the 
finest quality science, and we remain deeply grateful that you, 
this committee, grasp the importance of granting our esteemed 
researchers the opportunities to enable people to participate 
to the fullest in a society that grows more communications-
oriented every day.
    Thank you very much.
    Senator Specter. Thank you very much, Geraldine, Gerry, for 
your testimony and, more importantly, for your leadership on 
this very important cause.
    Ms. Fox. Thank you.
    [The statement follows:]

               Prepared Statement of Geraldine Dietz Fox

    Thank you, Chairman Specter and Senator Harkin for the 
opportunity to appear before you and the members of the Senate 
Appropriations Labor, Health and Human Services, Education and 
Related Agencies Subcommittee today on behalf of expanded 
funding for research and training at the National Institute on 
Deafness and Other Communication Disorders. It is a privilege 
to be able to thank you for your continuing attention to issues 
related to communication disorders.
    My name is Geraldine Dietz Fox, and I became hearing-
impaired after contracting the mumps at age 27. I last appeared 
before you in 1993 when I had completed my term of four years 
as Chairperson of the Advisory Board of the National Institute 
on Deafness and Other Communication Disorders. I am now the 
President of the National Organization for Hearing Research, a 
private charitable foundation which gives grants to auditory 
scientists to explore the preventions, causes, cures and 
treatments of deafness and hearing impairments.
    In a moment, the program areas and progress of the National 
Institute on Deafness and Other Communication Disorders will be 
highlighted by one of our field's most eminent scientists, Dr. 
Josef Miller. Dr. Miller is Director of the Kresge Hearing 
Research Institute and the Lynn and Ruth Townsend Professor for 
Communicative Disorders at the University of Michigan.
    Tremendous progress has been made in the years since the 
establishment of the Institute. I believe this is because the 
legislators have repeatedly shown their understanding that 
research not only enables people with communication disorders 
to lead more meaningful and productive lives, but also saves 
the government money. Through its generosity, Congress has 
fueled the Institute's growth and expansion since its 
inception, and has thus been a loyal friend to the 
communicatively disordered. We are extremely grateful for your 
dedication to improving the quality of life for this segment of 
society.
    I am entering into the testimony a letter from actress 
Nanette Fabray, who has long been a supporter of communication 
disorders research. Miss Fabray experienced the difficulties 
and hardships of hearing impairment first-hand before surgery 
cured her otosclerosis. Nanette wanted to be with us today, but 
she is appearing in a play on Broadway.
    Many other famous people have been candid about their own 
or someone in their family's communication disorder, people 
such as Louise Fletcher, whose parents were deaf; rock 
performers Pete Townsend of The Who and Lars Ulrich of 
Metallica, who both suffer because of their own loud music and 
now wear hearing protectors when they play; actress Marlee 
Matlin; golfer Arnold Palmer; dress designer Gianni Versace 
(who mentioned his cancerous ear-tumor operation in a recent 
issue of Vanity Fair magazine); singer-actress Barbra Streisand 
(who revealed her problem with tinnitus in Vanity Fair 
magazine); Gil McDougald, a New York Yankees baseball player in 
the 1950's; actor Richard Dysart; NBC medical correspondent Art 
Ulene; the first deaf Miss America Heather Whitestone; actor 
William Shatner (who has testified before you for increased 
funds for tinnitus); actress Florence Henderson (who was cured 
of otosclerosis through surgery); Detroit Tigers baseball 
player Curtis Pride; Pennsylvania Governor Tom Ridge; Marilyn 
Quayle, wife of the former Vice President, has a deaf sister; 
former Senator Harris Wofford, now head of the Corporation for 
National Service (whose grandmother was deaf and whose 
grandfather was educated as a tutor for the deaf); Beverly 
Sills (whose daughter is hearing impaired); singer Stephen 
Sills (of Crosby, Sills, and Nash); Kathy Buckley, the deaf 
comedienne; actor Richard Thomas; and former NFL Player of the 
Year Larry Brown (who testified with me several times). Lionel 
Hampton, who suffers from tinnitus, has established the Lionel 
Hampton Ear Research Foundation; and Ray Charles who, because 
of blindness, strongly depends upon his hearing to connect him 
to the world, has established the Robinson Hearing Research 
Foundation. These are but a few names that come to mind of 
people who have shared their stories with other people and are 
concerned about the distressing effects of a communication 
disorder.
    This short list suggests how pervasive communication 
disorders are in our society. In fact, according to the NIDCD, 
communication disorders affect more than 46 million Americans 
of all ages, races, gender and socio-economic levels. As the 
American population ages, and as the survival rate of low-birth 
weight babies improves, the number of individuals afflicted 
with or experiencing communication disorders is expected to 
increase. These disorders can impose a serious toll on the 
afflicted. Depending on the age at which a person is stricken, 
they can negatively impact a person's emotional, social, 
educational and cognitive development. The cost of these 
disorders in suffering, unfulfilled potential and economic 
factors is incalculable.
    You will hear In detail from Dr. Miller how the 
legislators' past concern and commitment has resulted in new 
initiatives, new investigations new discoveries and new 
therapies. But additional and increased Federal support is 
required not just to maintain the level of progress but to 
strive for even more substantial achievements in this field. I 
would like to urge the Committee that enlarging NIH's funding 
will not only increase NIDCD's funding for research and 
training, but it is also truly justifiable and in the best 
interests of the country.
    I was fascinated to read in a May 15, 1997 New York Times 
editorial concerning a National Science Foundation study that, 
``Research funded by government and nonprofit agencies accounts 
for over 70 percent of the scientific papers cited in the 
study's sample of recent patent holders.'' The editorial 
continues,``Spending (by the government) on research and 
development contributes perhaps half of the growth in American 
living standards. Each dollar spent on basic research 
permanently adds 50 cents or more each year to the national 
output--an impact that is many times larger than the permanent 
gains from increases in ordinary business investment. This 
latest [National Science Foundation] study suggests that 
government and university-based research pack the biggest 
wallop.''
    In the case of this Committee's appropriation to the 
National Institute on Deafness and Other Communication 
Disorders, increased funds will support research that has far-
reaching results. Discoveries resulting from government-
supported research may not only relieve communicatively-
impaired Americans of a burdensome, confining disability. They 
may also free them from or mitigate the constraints limiting 
their ability to fulfill their potential to contribute to our 
communications-oriented society. The benefits of knowledge 
produced by scientific research thus radiate outward from the 
individual, to the family, to the school, to the workplace, to 
the community, to the nation as a whole.
    We applaud the accomplishments of the National Institute on 
Deafness and Other Communication Disorders as it enters its 
ninth year confident that the upcoming year will be filled with 
excitement and vitality. We thank Congress for their astuteness 
and belief in our mission and goals We uphold our tradition and 
mandate to fund only the finest quality science and we remain 
deeply grateful that you grasp the importance of granting our 
esteemed researchers the opportunities to enable people to 
participate to the fullest in a society that grows more 
communications-oriented every day.

STATEMENT OF DR. JOSEPH MILLER, DIRECTOR, KRESGE 
            HEARING RESEARCH INSTITUTE, UNIVERSITY OF 
            MICHIGAN, PROFESSOR OF COMMUNICATIONS 
            DISORDERS, PROFESSOR OF OTOLARYNGOLOGY
    Senator Specter. We now turn to Dr. Joseph Miller, director 
of the Kresge Hearing Research Institute at the University of 
Michigan, professor of communications disorders and professor 
of otolaryngology. He has done research on middle ear function, 
noise exposure, and the development of cochlear implants, been 
a member of the research advisory committee for Gallaudet 
College here in Washington, and is a director of the board of 
the International Hearing Foundation.
    Thank you for coming today, Dr. Miller, and we look forward 
to your testimony.
    Dr. Miller. Thank you very much. Senator Specter, Senator 
Harkin, members of the subcommittee: I am here before you on 
behalf of the Friends of the NIDCD, which represents the health 
care professionals and research scientists concerned with the 
National Institutes of Deafness and Other Communication 
Disorders and the 46 million Americans with diseases and 
disorders of human communication that it represents.
    First let me say thank you very much for the very important 
and effective efforts to increase funding of the NIH last year 
and your efforts to increase its funding for this and coming 
years. The NIDCD is the principal resource for new knowledge 
for the prevention and treatment of diseases and disorders of 
hearing and communication, which affects more than one in every 
six Americans. This agency is the single most important source 
of support and hope for our citizens with hearing impairment, 
the Nation's No. 1 disability.
    As a result of the NIDCD support this year, we have 
identified new genes that cause hearing loss and how they work, 
and we will learn how to prevent genetic hearing loss. NIDCD 
research has made major inroads in the prevention of acquired 
deafness. Intense noise is the leading cause of acquired 
deafness in the industrialized world. We have discovered that 
treatment with certain hormones and growth factors can greatly 
reduce or prevent noise damage to the delicate sensory cells of 
the inner ear and prevent deafness. This treatment can also 
reduce or prevent deafness from drugs that cause hearing loss.
    At the present time, however, genetic and acquired deafness 
is still a major problem. But NIDCD-sponsored research has made 
great progress in the treatment of deafness. The cochlear 
prosthesis or bionic ear continues to be a major success, and 
now prototypes of the next generation of prostheses have been 
developed with solid state technology that make them more 
effective, more reliable, less expensive, and more available.
    Molecular treatments of the deaf auditory system is being 
developed to restore hearing. Treatments with chemical survival 
factors, neurotropins, can prevent nerves from dying and induce 
regrowth of nerve endings, as we heard in the last testimony by 
Christopher Reeve. Eventually, we hope it will yield hair cell 
regeneration. This new area of medicine is termed tissue 
engineering and molecular medicine. Newly identified molecules, 
drugs, and other factors are introduced directly into the inner 
ear to enhance resistance to environmental stress factors, 
prevent cell death, hasten repair, and eventually cause 
regeneration.
    As a part of this approach, cochlear prostheses will soon 
include channels for delivery of drugs and be covered with 
biopolymers that will act as matrix carriers for genetically 
transformed cells to function as tiny chemical factories to 
deliver other agents to the ear. These drugs, coupled with the 
implant, will stimulate nerve contact with the prosthesis, 
provide additional channels of auditory information to the 
brain, and increase speech recognition and comprehension.
    Testing of these new devices is just beginning under NIDCD 
support. These are just a few of the exciting new findings and 
developments from individual NIDCD-sponsored research 
activities. We should add the initiation by NIDCD of clinical 
trials of a vaccine for titus media in children, treatments of 
sudden hearing loss, swallowing disorders, and deafness.
    My examples have been drawn from the area of hearing 
sciences and deafness. Similar exciting advances in the areas 
of balance, taste, smell, voice, speech, and language that make 
up the responsibilities of the NIDCD could have equally been 
drawn. We have an ever-increasing ability to prevent and treat 
communication disorders. The laboratories are in place. The 
basic and clinical researchers are more devoted and dedicated 
and willing than ever. It is a wonderful time and the 
opportunities are great.
    However, the challenges are also great. Of the 5 million 
children receiving special education, more than 80 percent 
require training because of a hearing loss. Communication 
disorders are a factor in school performance and the 
occupational choices of our youth. Currently, deafness and 
communication disorders cost our country more than $30 billion 
each year. Communication underlies our service-based economy 
and communication disorders will compromise the success and 
standards of our country's progress into the next generation.

                           PREPARED STATEMENT

    It is the professional judgment of the officers of the 
NIDCD that the appropriations and funding of this Institute be 
increased by 50 percent. We know that is impossible. We request 
that every effort be made to increase the funding of the NIDCD 
by 12 percent. That is $22,300,000.
    Senator Specter, I am grateful to you for providing this 
opportunity to present this information and would be pleased to 
answer any questions you may have.
    [The statement follows:]

                 Prepared Statement of Dr. Josef Miller

    Senator Specter, members of the subcommittee, ladies and 
gentlemen, I am Dr. Josef Miller, Professor and Director of the 
Kresge Hearing Institute, Department of Otolaryngology, 
University of Michigan. I am here before you on behalf of the 
Friends of the NIDCD, which represents the professional 
organizations of Otolaryngologists, Audiologists, Speech and 
Language Therapists, and associated clinical and basic research 
scientists. We all share a concern for the National Institute 
on Deafness and Other Communication Disorders and the 46 
million Americans with diseases and disorders of human 
communication that it represents.
    First, on behalf of all the biomedical researchers and 
health care providers of this country, thank you for your 
funding of the NIH last year. The 5.7 percent increase you 
provided is having a remarkable effect on the efforts and new 
discoveries that drive the effectiveness of our health care 
enterprise. And thank you for your proposed 7 percent increase 
for the NIH for this and coming years.
    The NIDCD is the principal resource for developing new 
knowledge for the prevention and treatment of diseases and 
disorders of hearing and communication. These diseases and 
disorders affect 46 million Americans, more than one in every 
six people. This agency is the single most important source of 
support and hope for our citizens with hearing impairment, this 
Nation's No. 1 disability. As a result of NIDCD support this 
year, we have identified new genes that cause hearing loss, the 
way they cause hearing loss, and we will learn how to prevent 
these effects. We have also made major inroads in the 
prevention of acquired hearing loss. We have discovered that 
certain hormones and growth factors may prevent damage to the 
delicate sensory cells of the inner ear by intense noise, the 
leading cause of acquired deafness in the industrialized world. 
We have begun the development of novel delivery systems for new 
drugs and molecules directly to the inner ear, to prevent and 
treat hearing loss. Basic research has demonstrated this past 
year that it is possible to use viral vectors and genetically 
transformed cells to introduce genes and proteins into the 
inner ear--that will one day allow us a wholly new strategy for 
the prevention and treatment of hearing loss. We have 
demonstrated that we can prevent the death of auditory nerves 
and initiate regrowth of nerve endings. With continued success 
and luck we may learn how to make sensory cells regenerate with 
these and other strategies.
    During this last year the first of a new generation of 
cochlear prostheses, or bionic ears, have been produced. These 
new devices are based on solid-state technology and are now 
being tested in animals, with NIDCD support. This technology 
not only promises to provide a much more effective and reliable 
implant, for bypassing the deaf ear to directly stimulate the 
nerves to the brain, but should reduce by half, the costs of 
these devices. And, during this past year, we have initiated or 
continued clinical trials of a vaccine for otitis media in 
children, prevention of antibiotic-induced hearing loss, 
treatments of sudden hearing loss, swallowing disorders, and 
the very important problem of detection of deafness in infants 
so treatments can begin early in the life of the child.
    As a result of NIDCD support and new findings from studies 
at the interface of molecular and systems research, we have 
created a whole new field and strategy of research in the 
hearing sciences: the field of ``tissue engineering'' of the 
inner ear. This research is aimed at the identification of new 
molecules, drugs, and proteins that may be directly introduced 
into the inner ear to enhance its resistance to environmental 
stress factors, to prevent cell death and stimulate growth, and 
to hasten repair and cause regeneration. A wonderful example of 
the application of this strategy, but only one of many, is our 
next generation of cochlear implants. These new solid state 
electrodes will be coated with biological materials that will 
themselves deliver drugs and also act as a carrier for 
genetically transformed cells that will function as cellular 
chemical factories to deliver other agents to the ear. These 
drugs, coupled to the implant, will stimulate a growth of the 
hearing nerves to make intimate contact with the electrodes of 
the prosthesis, allowing much finer and a wider range of 
control of nerve activation. This will allow us to create 
additional channels of information to the brain and far greater 
benefits in speech recognition and comprehension.
    The cochlear implant is the success story of the NIDCD. It 
is the model for neuroprostheses and may lead to effective 
visual and motor prostheses. The technology we are developing 
in this area, particularly in relation to signal processing, is 
providing new directions for conventional hearing aid 
development. Studies of the cochlear prosthesis have provided a 
unique opportunity to learn more of how the nervous system 
processes information and the neural basis for perception. 
These implants will continue to improve. However, with new 
findings based on these novel and powerful strategies, we will 
soon discover how to use neurotrophins or mitogens to 
reengineer the ear tissues so they will repair and regenerate 
themselves. We will connect new sensory cells to regrown nerve 
fibers. This will be a treatment applicable to millions of 
children and the elderly who suffer from inner ear hearing 
loss.
    These new findings and developments are generated through 
individual research activities in laboratories and clinics 
throughout the country. They are generated through 
collaborative programs across agencies of the federal and state 
governments, and through collaborations between universities 
and industry, and they are generated across the globe. This 
combined approach is drawing effectively upon a much broader 
base of resources than ever before, increasing the efficiency 
of the field and integrating our new findings more effectively 
into the larger data base of biomedical research. We are 
benefiting more than ever from a diversity of research 
activities across a broader range of behavioral, biomedical and 
bioengineering disciplines. With these new research strategies 
and findings we are creating wonderful opportunities and 
excitement. These opportunities lie at a basic cellular and 
molecular level, but they also lie at the level of 
transnational research. New devices, new preventions and new 
treatments are at hand.
    My examples have been drawn from the area of hearing 
sciences and deafness. They could as easily and richly been 
selected from studies of balance, taste, smell, voice, speech, 
and language, the research areas that comprise the 
responsibilities of the NIDCD. We have an ever increasing 
ability to prevent and treat communication disorders, the 
laboratories are in place, the basic and clinical researchers 
are more devoted dedicated and willing than ever in our 
history. It is a wonderful time and we have great 
opportunities, however the challenges are also great.
    Of the 5 million children receiving special education, more 
than 80 percent require such training because of a hearing 
loss. Communication disorders are a factor in school 
performance and the occupational choices open to our youth. 
Communication underlies our service-based economy and 
communication disorders will compromise the success and 
standard of our country's progress in the next millennium. 
Currently deafness and communication disorders affect 46 
million citizens and is estimated to cost our country $30 
billion each year. Communication is an essential element in the 
fabric of our society and the structure upon which our bridges 
to and through the next century will be built. The payoff in 
terms of attacking a problem that must underlie the personal 
and economic success of a large portion of our society for the 
next century is enormous. It is the professional judgment of 
the officers of the Friends of the NIDCD that it would be 
appropriate to increase the funding of this institute by 50 
percent. We know that is not possible. We request that every 
effort be made to provide a 12 percent increase to the National 
Institute of Deafness and Other Communication Disorders to 
address the challenges presented to the lives of the large 
percentage of Americans with diseases and disorders affecting 
human communication.
    Senator Specter, I am grateful to you for providing the 
opportunity to present this information about this important 
part of the biomedical and behavioral sciences. I would be 
pleased to answer any questions you may have.

STATEMENT OF CAITLIN PARTON, STUDENT, TREVOR DAY 
            SCHOOL, NEW YORK, NY
    Senator Specter. Thank you very much, Dr. Miller. We will 
have a question or two.
    We now turn to the third member of the panel, Miss Caitlin 
Parton, student, Trevor Day School, where she is active in many 
extracurricular activities: music, performing arts, gymnastics. 
She has testified before the FDA regarding the approval of 
cochlear implants for the use of children and she has also 
appeared on the CBS news show ``60 Minutes'' and the subject of 
many articles.
    We welcome you here, Miss Parton, and look forward to your 
testimony.
    Miss Parton. Good morning. My name is Caitlin Parton. I 
would like to thank Senator Specter and members of the 
subcommittee for this opportunity to support the funding of 
medical research and to testify how that research has helped 
people like me.
    Hello, Senator Harkin. The last time I was here before this 
committee I was 5 years old.
    I am profoundly deaf. I got meningitis and almost died when 
I was a baby. After my illness I could not hear anything. A few 
months later I became a candidate for a cochlear implant. My 
parents made a very hard decision. The cochlear implant was 
still in investigative status with the FDA and there were not 
any other little kids to watch and see how the device helped.
    All that has changed. Today there are thousands of children 
using and benefiting from cochlear implants. But in January 
1988 I was the youngest child in the United States to have the 
implant surgery.
    I have been using the nucleus 22-channel device for 9\1/2\ 
years, and I love it. It is helping me a lot. The device 
delivers sound to my brain much the way the ear does. It 
consists of a microphone up here behind my ear. It picks up 
sounds and sends signals to a processor, this little computer 
box I wear in a pouch. The computer relays those signals to 
this magnet. That transmits the signals to a receiver under my 
skin and then to a string of electrodes which has been 
surgically implanted in my cochlea. The electrodes stimulate my 
auditory nerve. My brain interprets those signals and I hear. 
It is really amazing.
    I do not remember much about the operation or having to go 
to therapy at the League for the Hard of Hearing instead of 
doing other things. I worked hard to learn to listen and speak. 
These are things most people take for granted.
    I am very glad the implant was invented. I think it is 
important to have the implant as a choice for people who are 
born deaf or lose their hearing. It is a tool that brings you 
into the hearing world, the world of sound.
    I wear this miracle of modern science and I am a little 
different. I am a lot like everyone else, too. I do not wear 
the implant when I sleep, so in the morning when I wake up it 
is a shock to put the magnet on. At first it is a blur of 
sound, and then my brain filters out what the different sounds 
are: the radio, dad cooking breakfast, things dropping, the 
traffic outdoors, my parents asking if I remember this or that, 
or all of us going over the plans for the day.
    Sounds are really important to me. They give me something 
exciting to experience every day. Some of the sounds I enjoy 
most are my parents' and friends' voices, and me talking to 
everybody.
    I love music. I play the piano and I just started the 
flute. I like hearing what I play. I hate hearing my mistakes. 
I have a boom box and I love listening to my CD's and tapes.
    I am finishing the sixth grade. English, art, social 
studies, and French are my favorite subjects. I just finished 
an oral report on Franklin Delano Roosevelt. I sing in the 
chorus and was in our school musical. I had a great time. I 
think it is fun to learn. When I grow up I want to be an author 
and illustrator of children's books.
    I am also a member of the National Dance Institute. Over 
1,000 kids from all over New York's public and private schools 
dance together. My implant helps me hear the music, the 
director, and the beat that I have to dance to.
    Like most kids my age, I like talking on the phone. It 
helps me get homework assignments and make plans with my 
friends. I like being able to talk with my grandparents.
    This spring I started to travel home from school on the 
public bus by myself. I can call and tell my parents where I am 
and they do not worry, as much.
    Sometimes my parents let me go to the store by myself. I 
like being able to hear the cars and sirens. I feel safer. I 
like being able to ask the store clerk where something is. I 
like hearing the specials at a restaurant and ordering for 
myself.
    I love reading out loud to my little cousins. I love 
traveling and listening to different languages. I love the 
sound of waves crashing on the beach, thunder, wind in the 
trees, and all the summer picnic sounds. I like the sounds of 
the school cafeteria. It is noisy, but it sounds like a party 
to me.
    Practically the only sounds I do not like are my parents' 
words: It is time for bed.
    I do not wear the implant when I swim or play around water. 
That is when lip-reading comes in handy. I hope some day there 
will be a waterproof implant. I have also heard that very soon 
they will have one without a wire. I am looking forward to 
that, too.
    This technology is not perfect. I do not hear everything. 
Some situations are hard for me. I have to ask people to help 
or repeat things. But I think with research the implant will 
keep getting better, and the fact that new kinds of implants 
are being developed will help all of us.
    I have hearing and deaf friends. I go to A.G. Bell and 
Cochlear Implant Club conventions and have made friends from 
around the world. Most of the time I like being deaf. I feel 
special.
    I have worked hard and I am proud of what I have done. I 
have read some articles against the implant. I know some people 
say that kids like me will grow up and not really belong to the 
deaf culture world and we will not belong to the hearing world 
either. They say implanted deaf kids will not fit in anywhere.
    Instead of separating us into little groups or cliques, we 
need to learn to respect our differences, because deep down we 
are all the same. I think we need to remember we have something 
in common. We are all part of one community.
    The cochlear implant has given me choices and opened up the 
world for me. I know without the funding for research this 
device would never have been developed or improved. I would 
like to thank you for all the children like me and ask you to 
continue supporting this important work for our future.
    Senator Specter. Thank you very much, Caitlin, for your 
role model here, your leadership.
    With the device that you have, are you able to hear fully 
and completely?
    Miss Parton. I can hear almost all sounds. But of course, 
no one hears everything.
    Senator Specter. You find out you do not know what you do 
not know. But it brings you up to what the doctors tell you is 
normal hearing? Do the doctors say that the device which you 
have gives you normal hearing?
    Miss Parton. It is not exactly normal hearing. It gives you 
the benefit of getting as much sound as you can. It gives you 
more sound than normal hearing aids.
    Senator Specter. How expensive is it, if you know?
    Miss Parton. What?
    Senator Specter. How expensive is it, how costly?
    Miss Parton. I am not sure.
    Senator Specter. Well, thank you for your good work.
    Ms. Fox, when the request is made for an increase in 
funding, what achievements do you anticipate if there is a 
significant increase in funding?
    Ms. Fox. Well, I believe in the next 5 to 10 years we 
definitely will be able to hair cells. I think there will be 
genetic replacements for deaf people. I really believe that we 
will be able to prevent damage from noise in some people. I am 
not sure; I think that some people are more susceptible to it. 
But I think that there is going to be a way that we will be 
able to prevent that loud sounds cause so much damage.
    Probably Dr. Miller could answer this more fully than I am 
answering it. But those are the three things that I see that 
are the most important.
    Senator Specter. Dr. Miller, do you think you are in a 
better position to answer that question than Ms. Fox?
    Dr. Miller. Well, I am not sure better, but I can add to 
it.
    Senator Specter. I think her expertise in this line is 
unparalleled.
    Dr. Miller. It is remarkable, I absolutely agree.
    Senator Specter. When you ask for an increase of 12 
percent, Dr. Miller, do you have any special reason for asking 
for that precise amount?
    Dr. Miller. Yes; as I think about the comments of Senator 
Harkin, the number of excellent, outstanding, not very good but 
the excellent, grants that currently come before the council of 
the NIDCD, and I know the number of them that include 
breakthrough findings potentially that we have to put behind a 
closed door, to use your analogy, that we cannot get out.
    Some 7 years ago, for better or for worse, you created a 
new Institute and with that the success has been remarkable. 
The field has been energized. The number of investigators, the 
new programs that have been developed offer opportunities now 
that are remarkable. We will be able to have air cell 
regeneration so the ear cures itself. We will take nerves of 
the deaf child and have them regrow to grow out to that next 
generation of implants.
    Senator Specter. Is any of that available at the present 
time?
    Dr. Miller. Pardon me?
    Senator Specter. Is any of that regeneration available at 
the present time?
    Dr. Miller. Right now we know how to cause regeneration 
under special conditions in nonmammals, in birds, which we did 
not know a year ago. It could only occur with damage. Now we 
can initiate it with new stimulants, new kinds of chemicals. We 
are going to be testing those now in mammals to see whether it 
will work.
    We have discovered that certain cells that are not 
available in mammals, but are available in birds, that underlie 
the generation of the new hair cells.
    Senator Specter. Regeneration is not available as of this 
moment?
    Dr. Miller. No; it is not available as of this moment. We 
have other steps that we do.
    Senator Specter. What is the availability of detecting 
hearing loss at an early age so that we do not have children 
who have hearing loss which is not known?
    Dr. Miller. We have two or three excellent technologies for 
being able to do that. They are undergoing clinical trials now 
to be able to determine which is the very best. We should be 
able to bring the detection of hearing loss in this country 
down from an average of where it is now with 3 years down to 
the order of 7 months.
    That will be key for being able to introduce rehabilitation 
at a time when the brain is really available and open to this 
new education.
    Senator Specter. Well, I would urge you to help us make the 
opportunities in your field known, because the sky is the 
limit. Senator Harkin puts it very well on the closed doors. 
Nobody knows what is behind them. But we have our work cut out 
for us.
    Senator Harkin.
    Senator Harkin. We sure do. Thank you, Mr. Chairman, and 
thank you all for being here.
    Caitlin, I hope you will forgive me if I do not remember 
your face. You have changed a lot. I remember the name. That is 
why I could not quite put the two together. You have grown up a 
lot since I last saw you. When you said that, I looked at Gerry 
Fox. I remembered that you were here a long time ago.
    How many years ago were you here?
    Miss Parton. About 6 years ago.
    Senator Harkin. About 6 years ago. Well, it seems like you 
have really worked well with the implant?
    Miss Parton. Yes; it has really helped.
    Senator Harkin. What year are you in school now?
    Miss Parton. I go to the Trevor Day School.
    Senator Harkin. What year are you in school, what class?
    Miss Parton. I am going into seventh next year.
    Senator Harkin. Good for you. Good luck. Keep up your 
studies. That is great.
    Dr. Miller, Caitlin had meningitis. My brother, who is 
probably about 60 years older than you, also had meningitis, a 
long time ago. So many people have become deaf as the result of 
having had meningitis. I have asked this many times before, and 
I just wonder if there has been any new research as to why 50 
years ago--well, let us see--in my brother's case almost 60 
years ago, when he had meningitis, he became deaf as a young 
man, and here we are 60 years later, people still getting 
meningitis, becoming deaf.
    You would think that we would have done some research to 
find out, why does meningitis so often cause deafness?
    Dr. Miller. We know that meningitis can attack the nerves 
of the inner ear that go to the brain. Now we have developed 
certain vaccines that are beginning to be tested----
    Senator Harkin. I am sorry, Joe. I cannot hear you.
    Dr. Miller. We have developed certain vaccines that are 
being tested to prevent this. So there have been advances that 
have been made. But we have a ways to go. We still have to get 
those antibodies that we are using in the vaccines to target 
exactly the right antibody. We need more research. But there 
has been progress and we are making progress in that area, and 
we are reducing it.
    Senator Harkin. Is there any corollary research being done 
at the National Institute on Neurological, dah, dah, dah, dah, 
dah, dah, on meningitis and its----
    Dr. Miller. I am sure there is. I unfortunately cannot 
answer that question as to what is going on in that area.
    Senator Harkin. Well, I guess I am going to have to find 
out more. I have asked this question over the last several 
years and I just cannot seem to quite get my hands on focusing 
on meningitis itself, because of all of the causes of profound 
deafness in young people it seems to me meningitis always 
sticks out to me as being the No. 1 cause of profound deafness 
in young people.
    Dr. Miller. Importantly, some of the causes of meningitis 
are similar to those that cause middle ear disease. And trials 
on middle ear disease, the principal cause of children going to 
a physician under the age of 7, are under way now at the NIDCD, 
and we are hoping for remarkable reductions in that very costly 
disease in children. That I can tell you on the part of the 
NIDCD. The Neurology Institute, I----
    Senator Harkin. Well, I am just wondering. You know, 
meningitis goes into other areas.
    Dr. Miller. Yes.
    Senator Harkin. Disease and that type of thing, and I was 
just wondering if other institutes. Maybe I will just ask for a 
report from Dr. Varmas on that and find out just what is being 
done to look at meningitis itself as an illness and why it is 
affecting so much hearing loss in young people.
    It just seems like, after all these years, you would think 
that we would have found some blockage, something to not only 
prevent meningitis, but to prevent the lasting effects of 
meningitis.
    I am familiar, as you know, Gerry--and I appreciate all the 
work that you have done on this--with some of the advances that 
have been done in nerve cell regeneration. I must admit for the 
last year I have not perhaps kept up over the last year as much 
as I should have. But have we continued to make really good 
progress in the hair--what do you call it?
    Dr. Miller. The hair cells in the inner ear?
    Senator Harkin. Yes; the hair cells, regrowth and 
regeneration. You mentioned it briefly, both of you, I think a 
little bit. But you feel we are really making some good 
progress?
    Ms. Fox. I believe so, because we have more young people 
that are now interested in doing this type of work and 
sending--trying new things and sending their applications off 
to the NIDCD and also to the private foundations such as mine. 
We found very innovative, creative science, so that we get kind 
of off the wall ideas that, if they are successful, they will 
really change the field.
    But what we are seeing is that, as our field grows, we have 
more and more young physicians and doctors becoming--I said 
physicians and doctors; I meant researchers--becoming very 
interested and applying to the field, which is why we get so 
many wonderful, wonderful applications at NIDCD that cannot be 
funded, which is why we are here asking for more money.
    It is very sad. In fact, I read something in the paper, 
thinking about your proposal with the health care institutes. I 
read something in the paper someone sent me from a New Jersey 
paper where several years ago they had made a proposal that in 
the gambling houses in New Jersey that they would give a 
percentage toward research. So I am hoping that they will do 
that. That would be wonderful, and then we would have more 
researchers being able to try out their ideas.
    Senator Harkin. Sure.
    Dr. Miller. Senator Harkin, may I add to your question, to 
Gerry's answer? There is excellent research going on in 
regeneration. It is also important not to lose sight that there 
have been new recent exciting discoveries to prevent loss of 
the cells to begin with, to prevent loss from noise-induced 
injury, which really is the primary cause of hearing loss, of 
acquired hearing loss, and from drug-induced hearing loss, 
which causes thousands of cases of deafness in our country 
every year.
    It looks as though this year we have discovered factors. 
They are the same factors that Christopher Reeve mentioned. 
They are factors related to these neurotropins that cause nerve 
growth, that we can use to protect these cells and increase 
their resistance to environmental stress. That could have an 
enormous impact, not only on our youth, but also in the 
elderly, in years to come. That is very exciting to us at this 
time.
    Senator Harkin. One last thing. I also suffer from hearing 
loss. I go back to my days flying airplanes and I trace it to 
that, although my hearing loss is not as profound as my wife 
says it is, I can assure you.
    But I have suffered, as you know, Gerry, for years from 
tinnitus. It varies. Sometimes it gets worse than others, but 
sometimes it is pretty bad. And as you know, I have tried 
everything to solve it. I have talked to Dr. Snow many times 
about the research into that.
    Are you confident that we are making any headway at all in 
finding out, tinnitus, what causes it? No one even knows what 
causes it?
    Dr. Miller. I know. It has been an enormously difficult 
problem because it is so subjective, so to be able to take it 
and put it into an animal model and study the basic mechanisms 
has been a very difficult hurdle to overcome. We seem to be 
able--we seem to be beginning to do that. It is just at its 
initial stage, but we may have some models now that are 
beginning to work. We may have some new imaging techniques that 
are perhaps telling us objectively when tinnitus is present in 
the brain. That will give us a measure then that we can more 
precisely evaluate treatments. It is beginning. It is 
promising.
    Senator Harkin. Gerry, again let me thank you very much for 
all of your efforts in the past, your work to help get the 
Institute set up. It already seems it has been--how many years 
now, 8, 9?
    Ms. Fox. Pardon?
    Senator Harkin. How many years have we had the Institute 
now?
    Ms. Fox. Nine.
    Senator Harkin. Nine years?
    Ms. Fox. Yes; and I want to thank you for your instrumental 
help with Congressman Claude Pepper, because without the two of 
you we would not have had an Institute.
    Senator Harkin. Well, keep pushing for the 12 percent. I do 
not know that we are going to be able to do it unless my friend 
here can come up with it here.
    Senator Specter. I join my colleague in expressing 
appreciation from the subcommittee, the committee, and the 
whole Congress for your work. And we thank you, Dr. Miller, and 
you, Caitlin.
    Ms. Fox. Thank you very much.
    Senator Specter. What we need is some help on the lobbying 
effort. There is nobody better in America than Geraldine Fox.
    Senator Harkin. What we need--one thing I want to do with 
this. You have heard me preach this so many times, Gerry, about 
this fund for research. You have heard me talk about the 1 
penny from the dollar to set up this trust fund. See, there are 
a lot of, I think, Institutes and illnesses, diseases, that are 
being underfunded in terms of research in this country.
    If you looked at the number of people affected, the amount 
of dollars being spent, some are getting thousands of dollars 
per person affected. Others are getting tens of dollars per 
person affected. Hopefully, if we ever get this trust fund 
established, we can begin to correct that imbalance a little 
bit.
    Of course, this is one of the areas that is drastically 
underfunded. In terms of the number of people affected and the 
amount of money we put into research, I think it is like----
    Ms. Fox. About 46 million communicatively impaired people.
    Senator Harkin. I think it is around, if I am not mistaken, 
it is less than $20 per person.
    Ms. Fox. And worldwide, hearing impairments just alone 
worldwide, 120 million.
    Senator Harkin. Was it $2? Oh, it is $2 per person. Thank 
you.

                         CONCLUSION OF HEARING

    Senator Specter. Thank you all very much for being here, 
that concludes our hearing. The subcommittee will stand in 
recess subject to the call of the Chair.
    Senator Harkin. Thank you.
    [Whereupon, at 11:32 a.m., Thursday, June 5, the hearing 
was concluded, and the subcommittee was recessed, to reconvene 
subject to the call of the Chair.]

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