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Date: Wednesday, April 8, 1998 7:02:39 PM From: Michael Claeys, Parkinson Action Network [log in to unmask] "I'd like to respond to Karen Bardo's request for information on the funding of the Udall Act and ways to contact legislators. First I would like to address the responses she quoted from the Maine Senators. The first response she quoted, "You will be pleased to learn that in the final version of the Departments of Labor, Health and Human Services, and Education and Related Agencies Appropriation Bill, a total of $100 million dollars has been appropriated to fund basic research on Parkinson's disease" is unfortunately inaccurate. The final version of the FY98 Labor/HHS Appropriations bill included an AUTHORIZATION of up to $100 million for research focused on Parkinson's, but the vast majority of that money has not yet been appropriated. That is what our effort this year is all about--getting that funding. As for the second response, the following statement is accurate, "while the bill authorized the National Institutes of Health to spend $100 million on Parkinson's research and education, appropriations bills generally do not provide line-item funding for disease-specific research. Instead, in the final report on the appropriations bill, the conference committee stated that it was their understanding from NIH that sufficient funds were available within the amounts provided in the Institute's FY 1998 budget to expand research on Parkinson's." The next part of the statement requires more explaination "(T)he projected spending on Parkinson's research for FY 1998 is estimated at $98.5 million." This amounts to the NIH party line, and reflects neither an accurate representation of the federal Parkinson's research effort nor the intent of the Udall Act as passed by Congress. The NIH has two classifications of research into a given disease, like Parkinson's, cancer or Alzheimer's. These classifications are "direct" and "related," and as the names indicate, direct research is much more focused on the specific disease in question, while related research is often more basic investigations, or studies of vaguely similar things that may have some potential application to the disease in question. For example, related research into Parkinson's disease could include any research into neural cell death or neurodegenerative properties--and we even have past examples of studies into AIDS-related dementia and drug addiction being classified as "Parkinson's related research." Accepting the reality that in science seemingly unrelated investigations can provide valuable insights or even breakthroughs in unintended areas, it still seems prudent that with Parkinson's already having so many identified areas of promising research the limited research dollars should be as focused as possible. If you look, as we have done, at other diseases you see the vast majority of research dollars are classified as "direct." For example, from 1991 through 1995 (the last years NIH would provide us with data) of the total research funding for both breast cancer and AIDS, direct research accounts for 99% of the total. 98% of all cancer research is direct. 70% of all Alzheimer's research is direct. With Parkinson's, however, only 43% of the total funding is direct. In fact, Parkinson's is the only disease we've found where related research accounts for more funding than direct. So, while NIH claims they are going to spend an estimated $98.5 million in FY98, that figure reflects the total of both direct and related research, with direct accounting for less than half. In fact, on April 8, 1997 in responding to an inquiry from Senator John McCain, the NIH estimated they would spend only $35.1 million in direct Parkinson's research in 1998. We expect that number will actually be slightly higher given the passage of the Udall Act and a supposedly unrelated NINDS initiative to fund up to three Parkinson's disease Centers of Excellence, but we would be surprised if the FY98 direct funding for Parkinson's exceeded $40 million. And that would be right about the 43% of total funding we've seen throughout the 1990's. The Udall Act authorizes up to $100 million in "research focused on Parkinson's disease," and it is the intent of the bill--and of those in Congress who supported it--that that means $100 million in direct Parkinson's research. (Of course, as originally drafted, the Udall bill said exactly that, but Congressman John Porter modified the language during last year's Labor/HHS Appropriations Conference.) I recognize that this is a long and rather complicated explaination, but this is the reality of our situation. The message you deliver to your Senators and Representatives should be much more direct and clear: ensure $100 million in DIRECT Parkinson's research--fully fund the Udall Act!! To help you, below is a draft of a sample letter which you can use and modify to tell your personal story, so that your message will be as real and compelling as possible. Furthermore, if you have any questions, comments or requests, please don't hesitate to contact me either by email at "[log in to unmask]" or call me at (800) 850-4726. Michael Claeys Community Outreach Coordinator Parkinson's Action Network 818 College Avenue, Suite C Santa Rosa, CA 95404 SAMPLE LETTER TO CONGRESS Date The Honorable ____________________, M.C. United States House of Representatives Washington, DC 20515 OR The Honorable ____________________ United States Senate Washington, DC 20510 Dear Representative/Senator _________: I/we seek your support for an action which will benefit the Parkinson's community's great need for increased research funding. I/we ask you to support specific appropriations to fully fund the Morris K. Udall Parkinson's Research and Education Act, which President Clinton signed into law November 13, 1997. Authorizing up to $100 million in Parkinson's-focused research, this historic legislation is the first to mandate expansion and coordination of the federal Parkinson's research agenda. Continued Congressional leadership is required to ensure that the maximum possible funding is allocated to the most promising research this year. I care because I [my husband/wife/parent etc.] suffer from Parkinson's disease, a progressive neurological disorder that destroys brain cells controlling motor function. Available treatment only partially alleviates the resulting stiffness, tremor and slowness of movement. Eventually it leaves its victims unable to walk, to talk, even to move. [Revise for your personal story] In addition to these devastating human consequences, Parkinson's financially cripples our nation: It costs an estimated $25 billion in direct and indirect costs per year. In 1997, U.S. support for direct Parkinson's research was only estimated to be $34 million, or a mere $34 per year per patient, which is far less than most other diseases receive. The Udall Act has authorized a robust increase in this effort, but without adequate appropriations the Parkinson's community, and our country, will continue to suffer. This is unfair to the Parkinson's community, and it ignores a tremendous scientific opportunity. Scientists say they have the potential for major treatment advances, and very possibly a cure of Parkinson's, in this decade. But this will not happen without an adequate research investment. Last year with passage of the Udall Act, Congress took the first step to reprioritizing Parkinson's research. I/we urge you to continue this progress by appropriating sufficient resources to fully fund the $100 million Parkinson's-focused research effort. Thank you for your attention. I/we look forward to your response. Sincerely, (Your name, address, and phone number) ----------------------- Headers -------------------------------- -Path: <[log in to unmask]> From: "Parkinson's Action Network" <[log in to unmask]> Reply-To: [log in to unmask] Organization: Parkinson's Action Network