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Senate Appropriations
Subcommittee on Labor, Health and Human Services, and Education
Hearing on Parkinson's Research and Treatment September 28,
1999
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| The
Testimony of Michael J. Fox |
Specter:
We turn now to our second panel: Mr. Michael J. Fox, Mr. James
Cordy, Dr. J. William Langston and Ms. Joan Samuelson. If you
lady and gentlemen will step forward we will proceed with the
testimony. |
| We
welcome you all here. Ms. Samuelson is President of the Parkinson's
Action Network, and very active in promoting funding, and Dr.
Langston is the President of the Parkinson's Institute, and
a renowned expert in the field, Mr. James Cordy (where's your
hourglass, Jim?) has been an extraordinarily effective advocate
in the field, and as I noted earlier we have with us today Mr.
Michael J. Fox, a successful actor for many years, first as
Alex P. Keaton on the television series "Family Ties"--you
always work with a middle initial, don't you Mr. Fox?--later
in many movies, including "Back to the Future," and
most recently on television again on the highly acclaimed "Spin
City." Michael was diagnosed with Parkinson's in 1991 at
the age of 30, and has become very, very active in Parkinson's
advocacy. And one of the facts of life is that when someone
like Michael J. Fox steps forward, it very heavily personalizes
the problem, focuses a lot of public attention on it, and has
the public understanding of the need for doing whatever we can
as a country to conquer this disease and many, many others.
So we thank you for being here Michael J. Fox, and look forward
to your testimony. Again we'll put the lights on at five minutes
on testimony. |
| Mr.
Fox, we're going to start with you. |
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Fox:
Mr. Chairman, members of the Subcommittee--excuse me, 'pull
the mike down'--the story of my life! The mike is always too
high--Mr. Chairman, members of the Subcommittee, thank you for
inviting me to testify today about the need for greater federal
investment in Parkinson's research. Some, or perhaps all of
you, most of you, are familiar with me from my work in film
and television. What I wish to speak to you about today has
little or nothing to do with celebrity, save for this brief
reference. |
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When
I first spoke publicly about my eight years of experience
as a person with Parkinson's many were surprised, in part
because of my age, although 30% of all Parkinson's patients
are under 50, 20% are under 40, and that number is growing.
I
had hidden my symptoms and struggles very well, through increasing
amounts of medication, through surgery and by employing the
hundreds of little tricks and techniques a person with Parkinson's
learns to mask his or her condition for as long as possible.
While the changes in my life were profound and progressive,
I kept them to myself for a number of reasons: fear, denial
for sure, but I also felt that it was important for me to
just quietly "soldier on." When I did share my story
the response was overwhelming, humbling and deeply inspiring.
I heard from thousands of Americans affected by Parkinson's,
writing and calling to offer encouragement and to tell me
of their experience. They spoke of pain, frustration, fear
and hope. Always hope.
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| What
I understood very clearly is that the time for "quietly
soldiering on" is through. The war against Parkinson's
is a winnable war and I have resolved to play a role in that
victory. What celebrity has given me is the opportunity to raise
the visibility of Parkinson's disease and focus attention on
the desperate need for more research dollars. While I am able
for the time being to continue doing what I love best, others
are not so fortunate. These are doctors, teachers, policemen,
nurses, as you had indicated earlier, legislators, and parents
who are no longer able to work to provide for their families
and live out their dreams. |
| The
one million Americans living with Parkinson's want to beat this
disease. So do the millions more Americans who have family members
suffering from Parkinson's but it won't happen until Congress
adequately funds Parkinson's research. |
| For
many people with Parkinson's, managing their disease is a full-time
job; it is a constant balancing act. Too little medicine causes
tremors and stiffness, too much medicine produces uncontrollable
movement and slurring, and far too often Parkinson's patients
wait and wait (as I am right now) for their medicines to kick
in. |
| New
investigational therapies have helped some people like me control
symptoms, but in the end we all face the same reality: the medicine
stops working. For people living with Parkinson's the status
quo is not good enough. As I began to understand what research
might promise for the future I became hopeful that I would not
face the terrible suffering so many with Parkinson's endure.
But I was shocked and frustrated to learn the amount of funding
for Parkinson's research is so meager. Compared with the amount
of federal funding going to other diseases, research funding
for Parkinson's lags far behind. In a country with a $15 billion
investment in medical research we can and must do better. |
At
present Parkinson's is inadequately funded, no matter how one
cares to spin it. Meager funding means a continued lack of effective
treatments, slow progress in understanding the cause of the
disease and little chance that a cure will come in time. I applaud
the steps we are taking to fulfill the promise of the Udall
Parkinson's Research Act, but we must be clear we aren't there
yet.
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If,
however, an adequate investment is made there is much to be
hopeful for. We have a tremendous opportunity to close the
gap for Parkinson's. We are learning more and more about this
disease. The scientific community believes that with a significant
investment in Parkinson's research new discoveries and improved
treatment strategies are close at hand. Many have called Parkinson's
the most curable neurological disorder, and the one expected
to produce a breakthrough first. Scientists tell me that a
cure is possible, some say even by the end of the next decade,
if the research dollars match the research opportunity.
Mr.
Chairman, you and the members of the Subcommittee have done
so much to increase the investment in medical research in
this country. I thank you for your vision. Most people don't
know just how important this research is until they or someone
in their family faces a serious illness. I know I didn't.
The Parkinson's community strongly supports your efforts to
double medical research funding. At the same time, I implore
you to do more for people with Parkinson's. Take up Parkinson's
as if your life depended on it. Increase funding for Parkinson's
research by $75 million over the current levels for the coming
fiscal year. Make this a down payment for a fully funded Parkinson's
research agenda that will make Parkinson's nothing more than
a footnote in medical textbooks.
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| (Turning
pages isn't always easy!) I would like to close on a personal
note. Today you will hear from, or have already heard from,
more than a few experts, in the fields of science, bookkeeping,
other areas. I am an expert in only one: what it is like to
be a young man, husband and father, with Parkinson's disease.
With the help of daily medication and selective exertion I can
still perform my job, in my case in a very public arena. I can
still help out with the daily tasks and rituals involved in
home life, but I don't kid myself; that will change. |
| Physical
and mental exhaustion will become more and more of a factor,
as will increased rigidity, tremor and dyskinesia. I can expect
in my forties to face challenges most won't expect until their
seventies or eighties, if ever. But with your help, if we all
do everything we can to eradicate this disease, in my fifties
I'll be dancing at my children's weddings. And mine will be
one of millions of happy stories. Thank you for your time and
attention. |
Specter:
Thank you very much Mr. Fox for those very profound and moving
word |
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Testimony |
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