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RTK.NET Mail 114509 Jan 15 21:11:58 1996 Thank you to everyone who sent me responses they got from Nancy Kassebaum and/or thoughts on her objections to the Udall bill. Here is the letter I am sending her tomorrow. Unfortunately, brevity is not my strong point, but I try. Perhaps this will be helpful to others who want to respond to the stance she has taken so far. The Honorable Nancy Landon Kassebaum United States Senate Washington, D.C. 20510 Dear Senator Kassebaum: I am writing to urge you to reconsider your decision not to co-sponsor S. 684, the Morris K. Udall Parkinson's Research and Education Act. I appreciate your thoughtful responses to many of my friends who have asked for your support on S. 684. You stated that you were not supporting the Udall bill because you thought much of the money would be spent on "overhead" to run the various centers rather than on Parkinson's research. your response prompted me to study the bill more closely. At first I believed the Udall bill would set up new centers around the country rather than more efficiently expanding research and training programs in existing institutions. But subsection c) of the proposed amendment to the Public Health Service Act states that "centers assisted by Core Center Grants shall use the facilities of a single institution or a consortium" and shall "conduct basic and clinical research and provide patient care services". I don't understand how granting money to expand research and training programs at institutions already conducting such programs will result in a large portion of Udall bill money being spent on "overhead" costs. The appropriations section of S. 684 also limits Core Center Grants to $10 million of the $100 million appropriated for Fiscal Year 1996. Why not do _all_ the research at NIH? There are many reasons. For example, if there is an environmental factor in the cause of Parkinson's disease such as pesticide exposure or consumption of well water, the cause of Parkinson's may be found sooner if some of the money funds research in a wider variety of locations, especially centers which serve a larger rural population. Why spend money on training health professionals, educating the public, and developing a registry of people with Parkinson's disease? Because, as just one example, most health professionals do not know of the sometimes fatal interaction between the painkiller Demoral and the Parkinson's drug Eldepryl. Because, as recently reported by Associated Press, a study showed signs of parkinsonism to be far higher among the elderly persons studied than anyone would have expected. While parkinsonism can be caused by conditions other than Parkinson's disease, this study makes many wonder how many people with Parkinson's disease who could be helped by the treatments we do have are going undiagnosed. And in order to do the most effective research into the cause of Parkinson's disease, it will be extremely important to get a far better idea of how many people have the disease, where they live, and what risk factors they might share. I am trying to save the lives of people I love, admire, and care about, and I am committed to work towards this goal in the best way possible. I still believe the Udall bill is that way. The Senate's special neurodegenerative research initiative is an important step, and I thank you for your support of this much needed change. But it is only a first step in correcting the gross underfunding of Parkinson's research. When many scientists believe we could see a cure for Parkinson's within five years, increased funding is an _urgent_ matter. I have given serious thought to your concerns, and I still believe that the Udall bill is the best hope for people with Parkinson's disease. If I am wrong, I hope that you will correct my misinformation. But if I could possibly be right, I hope that you will reconsider your position on the Udall bill and sign on as a co-sponsor. Thank you for your attention. Please respond at your convenience. Sincerely, Sherri Cave etc.