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Voice from Washington

Congress Made Slow But Significant Strides in 2003

By Francesca Fierro O'Reilly, Managing Director of Education and Advocacy

Reflecting on the advocacy efforts of the Parkinson's community for 2003, we have a modest but well-earned right to feel proud. Despite a tough budget environment and numerous competing national priorities, such as homeland security and the war in Iraq, the issues that are most important to the Parkinson's community fared relatively well.

Our greatest victory was winning an increase of $4.75 million, or 22 percent, in federal funding for the Neurotoxin Exposure Treatment Research Program (NETRP) yielding a total of $26 million for Fiscal Year 2004. (The current funding level is just $21.25 million.) This important increase to an existing Defense Department program, through which a significant amount of Parkinson's disease research is funded, was signed into law by President George W. Bush on September 30, 2003. The bill had passed both the House of Representatives and the Senate by wide margins (407 to 15, and 95 to 0, respectively).

Currently, NETRP funds 106 research projects in 23 states. These efforts are designed to protect American forces from diverse exposures including chemical warfare agents and jet fuel, as well as radiation from radar and communications systems. The research will have broad implications for our understanding of the role of toxins in developing Parkinson's and other neurodegenerative diseases.

This achievement would not have been possible without the strong support of our Congressional champions, including U.S. Senators Ted Stevens (R-AK) and Daniel Inouye (D-HI) as well as U.S. Representatives Jerry Lewis (R-CA), Bill Young (R-FL), John Murtha (D-PA), and David Obey (D-WI).

Another achievement, in light of the tight constraints bearing on all federal spending except Defense, was an increase of 3.1 percent in funding for the National Institutes of Health (NIH) - 0.5% higher than the President's proposal of 2.6%. Within the total of $28.82 billion for Fiscal Year 2004, the National Institutes of Neurological Disorders and Stroke (NINDS) received $1.5 billion, also a 3.1% increase over the previous year. These increases would not have been possible without the tireless efforts of U.S. Representatives Ralph Regula (R-OH), Chairman of the House Labor-Health and Human Services-Education Appropriations Subcommittee, and David Obey (D-WI), Ranking Member, as well as U.S. Senators Arlen Specter (R-PA), Chairman of the Senate Labor-Health and Human Services-Education Appropriations Subcommittee, and Tom Harkin (D-IA), Ranking Member.

Critical progress was also made on the issue of therapy caps for outpatient services under Medicare, a longstanding area of concern for the Parkinson's community. The Medicare prescription drug bill, which narrowly passed by the House and Senate and signed into law on December 8, 2003 by President Bush, suspends the annual cap per patient of $1,590 for physical, occupational, and speech-language therapy benefits. It also imposes a moratorium on further caps for 2004 and 2005, to allow Congress time to study the matter further. In 1999, Congress had capped the annual amount of payments at $1,500 per Medicare beneficiary for these vital outpatient services, which can have a significant impact on the level at which people with Parkinson's can function on a daily basis. Although this favorable change is not permanent, it remains an important step in the right direction.

Not all progress was monetary. In the crucial area of Congressional leadership, the Congressional Caucus on Parkinson's Disease grew by over 20 percent, expanding from 50 to 65 participating Members of Congress. The Caucus, formed to promote the interests of the Parkinson's community in Congress, is co-chaired in the House by U.S. Representatives Carolyn Maloney (D-NY), Lane Evans (D-IL), Fred Upton (R-MI) and Mark Udall (D-CO) and in the Senate by Senators Gordon Smith (R-OR) and Debbie Stabenow (D-MI).

None of these achievements would have been possible without the active participation of the Parkinson's community in the public policy process. New challenges loom ahead for 2004, as the federal budget becomes even tighter and the competition between priorities sharpens. Indeed, the President has proposed only a 2.5% increase for NIH in Fiscal Year 2005. This increase does not even keep pace with inflation in the biomedical sector, projected to be 3.5% in 2005.

Other important issues on the Congressional table include, a potential federal ban on therapeutic cloning or somatic cell nuclear transfer (SCNT). On this as on other issues, the Parkinson's community must continue to make its united voice heard, loud and clear, by Congress and the Administration.

IT is your voice and your personal story that makes the difference. To learn how to make these assets count, try to see whether you can join us at the annual PAN Research & Education and Public Policy Forum, on March 28-30, 2004 in Washington, D.C. and join the Parkinson's community in raising its voice loudly on Capitol Hill. For details on the Forum and other information on public advocacy matters, contact the Parkinson's Action Network at (800) 850-4726 or visit their website at www.parkinsonsaction.org.