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The following is a message from Michael Claeys, Policy Coordinator for the Parkinson’s Action Network. With the United States Congress expected to adjourn by Thanksgiving, it is time for an update of legislative matters pertaining to Parkinson’s disease. Some of the topics covered in this message will be discussed in greater detail in future postings, and as always, questions or comments about legislation, advocacy or any Parkinson’s-related matters can be put directly to the Network by calling (800) 850-4726 or sending email to [log in to unmask] <mailto:[log in to unmask]>. 1999 has been a very successful year for the Parkinson’s advocacy movement. Parkinson’s advocates everywhere need to know that all of the legislative accomplishments are built on the foundation of grassroots advocacy. Members of Congress are educated, inspired and motivated to act by the tireless efforts of community advocates. Everyone who contributed to the cause - from writing a single letter or post card, to meeting repeatedly with a legislator or staff person, to offering financial support - should take pride in this year’s successes. The Network thanks you for all your hard work, and reminds you that it’s also time to thank those Members of Congress who have supported the Parkinson’s legislative effort. FY2000 Labor/HHS Appropriations Bill As one direct result of this year’s intense multi-faceted advocacy effort, the fiscal year 2000 Labor, Health & Human Services and Education (Labor/HHS) Appropriations conference report contains the following language: “NIH is expected to consult closely with the research community, clinicians, patient advocates, and the Congress regarding Parkinson’s research and fulfillment of the goals of the Morris K. Udall Parkinson’s Research Act. NIH is requested to develop a report to Congress by March 1, 2000 outlining a research agenda for Parkinson’s focused research for the next five years, along with professional judgment funding projections. The NIH Director should be prepared to discuss Parkinson’s focused research planning and implementation for fiscal year 2000 and fiscal year 2001.” For the first time ever, Congress is asking the NIH to develop a research agenda - with cost projections - aimed at finding a cure for Parkinson’s disease. This dramatic new request, and the March 1st deadline, has created a sense of urgency at the NIH, in Congress and throughout the Parkinson’s community. The Parkinson’s community owes a great debt of gratitude to Florida Congressman Bill Young, Chairman of the House Appropriations Committee, for his strong leadership in seeing this language included in the final Labor/HHS conference report. Individuals and support groups in the Tampa/ St. Petersburg area - and throughout the country - are encouraged to contact Chairman Young to express our thanks. The Honorable C.W. (Bill) Young 2407 Rayburn Building Washington, DC 20515 (202) 225-5961 - voice (202) 225-9764 - fax The Labor/HHS conference report is anticipated to also include a massive $2.3 billion overall increase for NIH, bringing its 2000 budget to nearly $18 billion. This additional funding provides the NIH with sufficient resources to increase its Parkinson’s research effort by the $75 million the community has requested throughout the year. In conjunction with the development of NIH’s March 1st report to Congress, the Parkinson’s community will continue to work with both Congress and the NIH to see that an additional $75 million is indeed spent on Parkinson’s-focused research. Department of Defense Parkinson’s Research Program The Army’s Neurotoxin Exposure Treatment Research Program (NETRP), which focuses largely on Parkinson’s disease as the model for studying the effects of environmental toxins on neurodegenerative disorders, was slated to receive no funding for fiscal year 2000. This would have been a major setback for a significant portion of the federal investment in Parkinson’s research. Once again, an intense multi-faceted advocacy effort succeeded in securing $10 million in the FY2000 Defense Appropriation bill. This is a big victory for the Parkinson’s community, and it could not have happened without the help and leadership of two important Members of Congress. Southern California Congressman Jerry Lewis, Chairman of the House Defense Appropriations Subcommittee, was instrumental in seeing the additional funds were available. Mississippi Senator Thad Cochran, a high-ranking member of the Senate Defense Appropriations Subcommittee, also played a key role ensuring the funding was retained during House - Senate negotiations. Advocates in Southern California, Mississippi and around the country are urged to contact Chairman Lewis and Senator Cochran to express the sincere gratitude of the Parkinson’s community. The Honorable Jerry Lewis 2112 Rayburn Building Washington, DC 20515 (202) 225-5861 - voice (202) 225-6498 - fax www.house.gov/jerrylewis <http://www.house.gov/jerrylewis> - website The Honorable Thad Cochran 326 Russell Building Washington. DC 20510 (202) 224-5054 - voice (202) 224-9450 - fax [log in to unmask] <mailto:[log in to unmask]> - email These Congressional leaders and all supportive Members of Congress deserve to hear the appreciation of the Parkinson’s community just as loudly as they heard the appeals and requests. The community will need the leadership of Senator Cochran and Congressmen Young and Lewis (and others!) next year and beyond, so it’s important to recognize their work on our behalf. And take a moment to thank your fellow advocates. Even though the cure is yet to come, the Parkinson’s community has come a long way in a short period of time - and the community could only have done so by working together. The Network will continue to provide updates and analysis of this year’s legislative accomplishments, as well as forecasts for the coming year - so please stay tuned and involved. You can join the Network’s free mailing list and sign up to receive other advocacy-related materials by calling (800) 850-4726 or emailing [log in to unmask]