TESTIMONY OF JAMES CORDY
on Behalf of the
COALITION FOR THE ADVANCEMENT OF
MEDICAL RESEARCH
Before the
SENATE APPROPRIATIONS COMMITTEE
Subcommittee on Labor, Health and
Human Services, and Education
May 22, 2003
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 &endash; 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&emdash;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&emdash;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 &endash; 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 &endash; 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 &endash; 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.
* The Coalition is comprised of nationally-recognized patient organizations, universities, scientific societies, foundations, and individuals with life-threatening illnesses and disorders, advocating for the advancement of breakthrough research and technologies in regenerative medicine &endash; including stem cell research and somatic cell nuclear transfer &endash; in order to cure disease and alleviate suffering.
