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from Mike Claeys, Parkinsoin Action Network from Mike Claeys, Parkinsons Action Network, [log in to unmask], 800-850-4726, 818 college Ave. Suite C Santa Rosa CA 95404, 202-628-2079, 1001 Pennsylvania Ave. NW, suite 850 North, Washington, DC 20004 "The Parkinson's advocacy community tallied another first-time accomplishment this year. In a move that is both a legislative and awareness-raising victory, five United States Senators joined together to speak out in favor of increased Parkinson's research. Participating in what's known as a "colloquy" -- a conversation submitted to the official and perminant Congressional Record -- were Udall Act champions John McCain (R-AZ) and Paul Wellstone (D-MN), Labor-HHS Appropriations Subcommittee members Thad Cochran (R-MS) and Larry Craig (R-ID), and Labor-HHS Appropriations Subcommittee Chair Arlen Specter (R-PA). The intent of the colloquy is to reinforce the report language included in the Senate Labor-HHS Appropriations bill and the final Labor-HHS conference report, to clearly express the intent of Congress with regard to the Udall Act and Parkinson's research funding, and also to submit to the record additional information not included in the report language. While a colloquy does not carry the force of law, it does serve to put the NIH on notice that Congress is intent on seeing Parkinson's research increased consistant with the mandate of the Udall Act. As important is what is said, is who is saying it -- senior and influencial members of the Labor-HHS Appropriations Subcommittee, Senators with experience and influence over medical research funding issues, and Senators with a passionate commitment to eradicating Parkinson's disease. This colloquy gives the Parkinson's community additional credibility and leverage as we continue to work with these Senate champions to increase the amount and sharpen the focus of NIH Parkinson's research agenda. It also demonstrates the growing political clout the tireless grassroots effort has helped achieve. By cosponsoring and voting for the Udall Act, Senators Cochran and Craig have been supportive of our efforts, but this year they took their support to the next level by becaming active champions on behalf of the Parkinson's community. With their seats on the pivotal Labor-HHS Appropriations Subcommittee, Cochran and Craig are well positioned to influence NIH and to work with thier colleagues, including Chairman Specter, to ensure that focused research funding is provided. It is a credit to the commitment of the Parkinson's community that all these Senators and their staff were able to work together to achieve our common goals -- especially given that this colloquy came together during the extremely hectic final days of the session. Each of these Senators deserves the thanks of the entire Parkinson's community, but activists in Mississippi, Idaho, Arizona, Minnesota and Pennsylvania are especially encouraged to contact their Senators and thank them for their hard work on our behalf. All of these Senators can be reached by writing to: The Honorable ___________ United States Senate Washington, DC 20510 The colloquy appears below as it appears in the October 21 Congressional Record. Any questions, comments or requests for copies of the colloquy should be referred to PAN's Michael Claeys at (800) 850-4726 or via email at "[log in to unmask]" Congressional Record - Senate October 21, 1998 Colloquy Accompanying Passage of Fiscal 1999 Omnibus Budget Agreement Parkinson's Disease Funding Mr. COCHRAN. Mr. President, one year ago this body adopted, by a vote of 95 to 3, legislation increasing our nation's commitment to finding the cause and cure for a long overlooked, but truly devastating disorder: Parkinson's disease. I was proud to cosponsor and vote for the Morris K. Udall Parkinson's Disease Research Act, signed into law as part of the Fiscal 1998 Labor, Health and Human Services, Education and Related Agencies Appropriations Act. The Udall Act authorized $100 million in research focused on Parkinson's disease to be funded through the National Institutes of Health in fiscal year 1998, 1999 and beyond. The passage of the Udall Act was a great accomplishment, particularly for the hundreds and thousands of victims, and their families and friends, who worked so diligently to bring this issue to the Congress and make us aware of the need for additional Parkinson's research funding. I would also like to commend the Senior Senator from Pennsylvania, one of the true champions of medical research, for his strong support of the Udall Act and Parkinson's research. Mr. SPECTER. I appreciate the remarks of my friend from Mississippi. He is correct that Parkinson's disease is a very serious disability, but one for which medical science does hold great promise. In addition, I too would like to commend the efforts of the Parkinson's community who have worked tirelessly to achieve passage of the Udall Act and increase funding for Parkinson's research. Mr. COCHRAN. Mr. President, I am concerned that the National Institutes of Health has implemented neither the letter nor the spirit of the Udall Act, and that funding for Parkinson's-focused research has not increased in a fashion consistent with Congressional intent. An independent analysis, conducted by Parkinson's researchers at institutions all around the country, of the grants NIH defined as its Parkinson's research portfolio for fiscal year 1997 indicates that a majority of the grants are in fact not focused on Parkinson's disease. Only 34 percent of the funding NIH claims is Parkinson's research is actually Parkinson's-focused research, as required by the Udall Act. As troubling as that is, the study also found that 38 percent of the funding has no relation whatsoever to finding a cause or cure for this terrible affliction. It is my understanding from published NIH budgetary documents that $106 million is expected to be allocated to Parkinson's research in fiscal year 1999. My concern is that without more direction from Congress, the NIH will undermine the intent of the Udall Act by continuing to classify, as part of its Parkinson's portfolio, research that is not focused on Parkinson's disease and, in doing so, will allow meritorious and much-needed Parkinson's research projects to go unfunded. I propose that a hearing be held early in 1999 to address and clarify these matters. Mr. SPECTER. The gentleman has brought up important issues, which warrant further discussion. Mr. CRAIG. As a sponsor of the Udall Act and supporter of Parkinson's research funding, I appreciate the Chairman's interest in these matters. The NIH claimed to spend more than $89 million on Parkinson's research in 1997. The Congress set a baseline authorization of $100 million for Parkinson's research in the fiscal year 1998 bill making NIH appropriations and clearly stated in report language that Congressional intent was to increase the commitment of NIH resources to Parkinson's. Close review of NIH's Parkinson's funding practices indicates that most of the research funding they define as Parkinson's is, in fact, not focused on Parkinson's at all. The NIH claimed to spend more than $89 million on Parkinson's research, in FY 1997. In reality, we later discovered that less than $31 million--just more than one third--of that research was truly focused on Parkinson's. Obviously there seems to be some disconnect here. Congress needs to be as clear as possible when communicating our intent to NIH, and diligent when overseeing their funding practices with regard to Parkinson's. I agree with Senator Cochran that hearings should be held early next year to address these issues, and I look forward to working with him, the Chairman, and others to see this resolved. Mr. SPECTER. I thank the gentleman from Idaho and look forward to future discussions on his suggestions. It is a pleasure to recognize the sponsor of the Udall Act, and someone who remains very close to Mo and the Udall family, the distinguished Senator from Arizona. Mr. McCAIN. I thank my friend from Pennsylvania. The Senator is correct that this is an issue of personal importance to me, and I appreciate his support as we work to defeat this terrible disease. I would also like to acknowledge the tremendous efforts of the Parkinson's community--courageous individuals in my state and all across the country who have worked so hard to pass the Udall Act and continue to work to achieve its full funding. There are an estimated one million Americans living with Parkinson's disease, and the nature of its symptoms are such that they impact heavily on families and loved ones as well. Add to these staggering human costs the fiscal burden of health care expenses and lost productivity, and it's easy to see that Parkinson's deserves to be a higher national priority. Parkinson's disease also represents a real research opportunity, where an investment of funds is likely to yield improved therapies sure to reduce both the personal and financial costs to our families and our nation. To realize this opportunity, though, it is up to Congress and the NIH to ensure that these funds get allocated to research focused on Parkinson's. Chairman Specter and others in this body have worked hard to ensure that NIH has the overall funding it needs to aggressively pursue research opportunities like those relating to Parkinson's. I have received a letter dated May 21, 1998 from NIH Director, Dr. Harold Varmus, which includes a chart indicating that the NIH will spend over $106 million on Parkinson's research in fiscal year 1999. I look forward to working with my colleagues and the NIH to see that this funding goes for research principally focused on the cause, pathogenesis, and/or potential therapies or treatments for Parkinson's disease as mandated by the Udall Act. Mr. SPECTER. I thank the gentleman for his remarks, and look forward to continuing to work with him on these matters. Now I would like to recognize the other Senate sponsor of the Udall Act, another Senator with a deep and sincere connection to Parkinson's disease, the gentleman from Minnesota, Senator Wellstone. Mr. WELLSTONE. I thank the Senator, and commend him for his support on this very important issue. I also wish to thank my friend, Senator McCain, for joining me last year in sponsoring the Udall Act. I believed when we passed the Udall Act last year we had begun to change a sad history of chronic underfunding of Parkinson's by the NIH. It was a very personal victory for me--and for all those who fought so hard to see the Udall Act enacted into law. I am here today, along with my colleagues, in an effort to fulfill the promise of the Udall Act and the commitment we in Congress made to people with Parkinson's, their families and those researchers dedicated to curing this disease. I find it very disheartening to learn that so little of the research NIH claims to devote to Parkinson's is actually Parkinson's-focused as called for by the Utall Act. It was our intent and it is our obligation to ensure that at least $100 million in research specifically focused on Parkinson's is allocated. And if it takes stronger language, more oversight, or congressional hearings to guarantee it gets done, then that's what we must do. Members of the Senate have expressed their interest in seeing the Udall Act fully funded in fiscal year 1999, and we have taken some positive steps this year to accomplish that goal. But our work is not done. The ultimate goal is not legislative accomplishments. It is not adding more dollars to this account or that one. The ultimate goal is to find a cure for this horrible, debilitating disease so that more people don't have to suffer the way my parents and our family did, or the way Mo Udall and his family does, or the way countless families do every day in this country. By passing the Udall Act we made a promise to put the necessary resources into the skilled hands of researchers dedicated to finding that cure. I intend, as I know my colleagues and those in the Parkinson's community intend, to do everything I can to fulfill that promise. Mr. SPECTER. I thank the Senator from Minnesota and all of my colleagues for their remarks today about Parkinson's research funding through the NIH. I look forward to working closely to address the concerns expressed here today. ----------------------- Headers -------------------------------- Return-Path: <[log in to unmask]>