HEARINGS & TESTIMONY

May 22, 2003

Labor HHS Subcommittee Hearing: Statement of James
Cordy

Good morning Chairman Specter, Ranking Member Harkin,
and Members of the Subcommittee. Thank you for the
opportunity to testify today on the limitations of the
current federal policy regarding embryonic stem cell
research.

My name is Jim Cordy, and I am here on behalf of the
Coalition for the Advancement of Medical Research. The
Coalition is comprised of more than 75 patient
organizations, universities, scientific societies,
foundations, and other entities advocating for the
advancement of breakthrough research and technologies
in regenerative medicine in order to cure disease and
alleviate suffering.

I'm here to give you a view from the waiting room of
biomedical science and what it's like to be a patient
waiting for a breakthrough in medical science. I have
Parkinson’s disease and the promise of regenerative
medicine is a significant part of my hope for a cure
and a better, longer life. At this early stage, we
must not overstate the science, but given the findings
to date, there is no denying the hope stem cell
research offers.

I am one of the many millions of Americans who will
benefit from biomedical research, made possible by the
dollars that you appropriate. I view this invitation
to testify as my opportunity to change the world. If I
choose the right words, paint the right picture, I
hope to give you not only a glimpse of what it's like
to have a neurodegenerative disease, but also a sense
of the staggering utter despair, frustration, and
anger that accompanies such a diagnosis. But the
intensity of those emotions pale in comparison to my
feelings as a potential cure is dangled in front of me
only to see well-intentioned decision-makers limit our
brilliant scientists and impede reaching that goal.

Parkinson's disease means that the neurons, the cells
in the brain which control movement, continue to die
day after day after day. I found this hourglass to be
an effective aide to help those that don't have
Parkinson's appreciate the relentless and ruthless
nature of this disease. Just as the grains of sand
flow from the upper chamber into the lower chamber,
the neurons in the upper chamber of my brain
relentlessly die. The result is the loss of one
function after another after another. The worst-case
scenario- the one everyone who has Parkinson's fears-
is that which beset your colleague Mo Udall, who
became trapped his body unable to move or speak as a
result of his advanced case of Parkinson’s.

You may ask how I feel about the need for increased
stem cell lines. You need only look at my hourglass to
know my answer. I'm in a race against time. Will the
cure, which I hope for, come soon enough for me? We
won’t know until the scientists have the support of
the federal government to fully explore this area.
It's an unbelievable and horrible shock to hear the
doctor say, “you have Parkinson's disease.” I'm sure
it's the same for MS, cancer, cardiovascular disease,
or Alzheimer’s. But it is incredibly frustrating to
see potential breakthroughs on the horizon and not be
able to reach them as fast as humanly possible.

Time is running out for the more than 100 million
Americans with permanently disabling, and ultimately
fatal, diseases and conditions such as Parkinson’s,
diabetes, and Huntington’s. I am not a scientist, I am
here today as the voice of all of us who may benefit
from stem cell research. It is time to let the
scientists work.

Leading scientists inform us that embryonic stem cells
have significant potential to treat conditions like
Parkinson’s, Rett Syndrome, and autoimmune diseases;
federal funding is integral to finding the promise
behind the potential – it is imperative not just for
my sake, but for the sake of so many Americans.

By coincidence, my invitation to testify here today
came to me as I attended an intensive three-week
course and international symposium on human embryonic
stem cells. I've met and spoken with senior scientists
and young scientists just beginning their careers.
They are dedicated, brilliant, and enthralled with the
potential of this new emerging technology to
dramatically improve the human condition. I've seen
and heard in detail the first steps taken to cure
Parkinson's disease, Canavan disease, Kernicterus,
liver disease, glaucoma, Tourette’s Syndrome, urinary
incontinence, and many more.

I had lunch with one of the world’s premiere
researchers who left the United States because of its
prohibitive laws regarding embryonic stem cell
research. Although I believe this to be highly
unusual, it could be the beginning of a terrible
trend. Typically we see the best and brightest
scientists from other countries coming to the United
States because of the great strength and capacity of
our biomedical research initiatives. I have spoken
with a senior NIH scientist who is actually placing
embryonic stem cells into the brain of a rat that had
the symptoms of Parkinson's disease. The stem cells
recognize the damaged neurons, produced new ones to
replace the damaged neurons, and stopped producing
neurons when a sufficient number was achieved. As a
result the Parkinson's symptoms of the rat were
greatly reduced.

If we do not handcuff and shackle our scientists, the
technology may be ready for clinical trials in the
near future. Much of the embryonic stem cell debate
has rightly focused on repair and replacement of
damaged parts. But the unraveling of the secret of how
these cells, which initially can produce any part of
the human body, know to change into specific cells may
be the Rosetta stone of human development and
revolutionize medical science.

While I applaud President Bush for keeping the door
open for federal funding of embryonic stem cells
research, I believe that the current policy needs to
be revisited.

It is my understanding that in 2001, when the
President announced his embryonic stem cell research
policy, there were thought to be at least 60 stem cell
lines that qualified for federally funded research.
However, after first increasing that number to 78, the
National Institutes of Health announced last month
that there are just 11 lines. Furthermore, all 11
lines are contaminated by mouse “feeder” cells, which
may disqualify them for human therapeutic use. Science
has progressed, and now we have the technology to
develop stem cell lines free of mouse cells.

In light of this situation, the President should
broaden his stem cell policy-- it could be a matter of
life or death!

Debate on the current policy is not unwarranted, but
please realize that every day that the debate
continues and the current policy remains in place is
one day less that patients spend with their families
and friends as well as one day further from potential
treatments—one day further from hope realized.

We need to prime the pump so that if the science
reaches the point where clinical trials are
appropriate we’re not waiting and playing catch-up
with other countries which have access to “clean” stem
cell lines. The United States needs a comprehensive
stem cell policy based on science and saving lives and
not on politics. The scientists tell us that
Parkinson’s disease could be close to a breakthrough,
but the benefits derived from progress will not
benefit Parkinson’s alone—since a rising tide raises
all boats-- cancer, juvenile diabetes, and others will
benefit too.

You have the power to provide the scientists with the
necessary resources to explore the promise of
regenerative medicine and make it real in terms of
better treatments, advanced therapies, and ideally,
cures. As an individual forced to wait for the day
this research advances enough to begin clinical
trials, I look to the federal government to fund new
stem cell lines, uncontaminated by mouse cells, in
parallel with the current policy. Why should we ask
our researchers to do their work with one hand tied
behind their backs?

Due to my advancing Parkinson’s, my physical abilities
have eroded – my hands and legs shake and my body is
stiff. I can no longer tie my tie, wash my hair, or
tuck my shirt in. I can’t shuffle papers or drive my
car. I have lost my facial expression, sense of smell,
and I now have a monotone voice. But I wouldn’t be
here today if that was the extent of my problems.
Unfortunately those are just previews of the horrors
to come if we don’t cure this sinister disease.

But I consider myself fortunate for an individual who
has had Parkinson's for over 15 years. For the several
hours of the on/off cycle when I get sufficient
dopamine to my brain I can function with some degree
of normalcy as you see me here today. Many of my
fellow Parkinson’s advocates are in wheelchairs. One
dear friend is, at this moment, in intensive care
having fallen down 18 steps because of the balance
problems associated with Parkinson's. I rarely express
anger about my disease, except when I see my dear
friends get progressively worse. Peter, Dale, Lupe,
Jim Dandy, to name a few, I know are with me in spirit
even though they're no longer able to be here by my
side.

Probably only my wife realizes the progression of my
disease because I don't leave the house when I'm off.
I lie down and wait for the time to take my next pill
and wait some more for it to work.

I have hope, as do others. I speak not just for me and
my disease, but for the others, their families,
friends, and caregivers who have hope as well. Let me
assure you that I’m not going to sit back and wait for
my body to stop working. I am determined to win this
race against time, but I need your help. Before
concluding, I will turn this hourglass over. Notice
that the top chamber is replenished – just as a
scientific breakthrough which cures Parkinson’s will
replenish my brain cells.

I believe we should leave the science to the
scientists so the possibilities of the research can be
uncovered. However, the potential reward is so great,
it seems clear to me that we must pursue embryonic
stem cell technology with all speed possible, which
means developing new lines concurrently, and not
sequentially.

Please, please don’t let time run out for me and the
over 1.5 million Americans with Parkinson’s, and the
over 100 million Americans with diseases and
conditions who are almost certain to benefit from
regenerative medicine, including embryonic stem cell
research. It is unconscionable to let time run out –
especially now that the scientists tell us the finish
line might be within sight.

On behalf of the Coalition for the Advancement of
Medical Research I again thank the Committee for its
deliberations and for the opportunity to speak to this
issue.




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