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Date: Thu, 21 Dec 2000 18:38:54 -0800 From: Mike Claeys <[log in to unmask]> Subject: PAN Labor/HHS Appropriations Update To: "Mary Yost (E-mail)" <[log in to unmask]> A Parkinson's Disease Advocacy Update Michael Claeys, Senior Policy Coordinator Parkinson's Action Network Date: 12/20/2000 Re: FY 2001 Labor/HHS Conference Report Language On Friday December 15, the House approved by a vote of 292 to 60 and the Senate approved by unanimous consent the fiscal year 2001 omnibus appropriations package, which includes the Labor/HHS appropriation bill. The $108.9 billion Labor/HHS bill contains $20.3 billion for the National Institutes of Health, an increase of $2.5 billion (14%) over fiscal year 2000. Back on October 29, Congressional leaders has reached agreement on a 2001 Labor/HHS bill totaling roughly $112.8 billion, but this pre-election deal was never brought to the House or Senate floor. In November, Republican House leaders demanded that the Labor/HHS bill’s total be cut by $4 – 5 billion. Among the elements of this overall cut was a $200 million reduction (from $2.7 billion to $2.5 billion; or from 15% to 14%) in the proposed increase for NIH. The fiscal year 2001 budget is the third installment of the five-year effort to double the NIH budget from 1998 to 2003. The most direct equation to achieve “NIH doubling” is five consecutive increases of 15%. It is impossible to know if this minor deviation from the formula will significantly impact or delay the ultimate goal. During the campaign, Pres.-elect Bush made statements supporting the goal of doubling NIH, but currently there are too many unknowns to predict whether those statements will be upheld. Obviously Congressional and private sector research supporters need to engage in a coordinated campaign to secure strong Administration support for continuation of the doubling effort. The conference report accompanying the 2001 Labor/HHS appropriations bill contains the following language relating to Parkinson’s disease research funding: NIH – Office of the Director "The NIH has developed a five-year Parkinson’s Disease Research Agenda. To carry out the plan, the professional judgment budget estimates call for increases over existing Parkinson’s research of $71.4 million in year one (fiscal year 2001). The conferees strongly urge the Director to work toward implementation of the research agenda and oversee coordination of all relevant Institutes, including the National Institute on Neurological Disorders and Stroke, the National Institute on Environmental Health Sciences, the National Institute on Aging and others conducting Parkinson’s research. The Director is requested to report by March 1, 2001 on the progress towards implementation of the research agenda and to submit updated professional judgment funding projections for subsequent years." The urgency of our cause demands that we are not satisfied by anything short of an $71.4 million earmark for year one of the research agenda and additional language ensuring that all other PD research funding (estimated by NIH to be $165 million in 2001) is allocated to high-priority Parkinson’ s-focused projects. In light of this exceedingly high standard, and the prevailing political climate, securing the language we did is a significant accomplishment won through sound strategy and relentless effort. The Parkinson's Action Network is enormously grateful to every advocate across the country that has sent even a single letter or made a single telephone call to your federal legislators. And the entire Parkinson's community owes a debt of thanks to the countless individuals who did that and much, much more. Your efforts paid off -- your voices were heard -- and you made a difference!! This accomplishment was a true team effort, and lots of people deserve to share the credit. After congratulating yourself and your fellow advocates, we urge you to take a minute to drop a note expressing your gratitude and continued commitment to our Congressional supporters. House Appropriations Chair Congressman Bill Young (R-FL) is chiefly responsible for this year's conference report language, and he deserves our most sincere thanks. Senators Tom Harkin (D-IA) and Arlen Specter (R-PA) also helped mightily with the language. Long-time supporter Senator Paul Wellstone (D-MN) provided his valuable energy and support, as did Senators Thad Cochran (R-MS) and retiring Senator Connie Mack (R-FL). Each of you can assist in the follow-up effort by sending thank you notes to the Members listed above, and by sharing the report language with your Senators and Representatives. Now is also the time to establish relations with newly elected Members of Congress, or reestablish relations with your returning legislators, and enlist their support for our legislative campaign. It's never too early, or too late, to groom another Parkinson's champion! Lastly, this update deals solely with the recently adopted conference report language concerning Parkinson's research funded through the NIH. This year also saw significant advances in Parkinson's research funding at the Department of Defense, announcement of several major research advances and, of course, the unprecedented explosion of media coverage and public awareness coinciding with the launch of the Michael J. Fox Foundation for Parkinson's Research. The advocacy effort will not end until there is a cure, but take some time over the holidays to reflect on this successful and memorable year. Happy and peaceful holidays from the Parkinson's Action Network. We thank you for your effort and support.