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The Voice from Washington

PD Advocacy Gathers Steam from PAN Forum

By Mary Richards
Director of Government Relations, PAN

The Parkinson's Action Network (PAN) held its 12th Annual Forum from February 19 - 21. After two days of training on Parkinson's policy issues and hearing stirring speeches from PAN Founder Joan Samuelson and Janet Reno, the former US Attorney General who lives with Parkinson's, advocates swarmed over Capitol Hill for more than 200 visits with legislators and their staff. Although much progress has been made, we encourage everyone in the Parkinson's community to continue pushing Congress to support important Parkinson's issues.

Member support
The hard work and dedication of our advocates has produced impressive results thus far. Since the Forum, three Senators and 22 Members of the House have signed on to the Udall Act Amendments, important legislation to support Parkinson's research of the highest quality. In the area of financial appropriations, 22 Senators supported our request for increased funding for the Department of Defense's Parkinson's research program, NETRP, and more than 50 Members declared their commitment to supporting the House version of the same appropriations request letter which will be circulated later this spring.

Stem-cell research legislation
Forum attendees were also encouraged to speak to their representatives on the issue of federal support for research involving stem cells. As we have reported in past columns, Senate Majority Leader Bill Frist announced in late July 2005 that he supports the lifting of restrictions on embryonic stem-cell research placed earlier by the Bush Administration, and vowed to hold a vote on the Stem-Cell Research Enhancement Act (HR 810) during the first half of 2006. PAN advocates urged Senate leadership to bring HR 810 to the Senate floor for a positive vote, without amendment, before May 24, which marks the one-year anniversary of the bill's passage in the House. To achieve this, we ask the Parkinson's community to contact their representatives to express support for the bill.

Testimony on the Hill
In early March, a hearing was held by a Subcommittee of the US House Committee on Government Reform on somatic cell nuclear transfer (SCNT), a type of stem-cell research referred to as "therapeutic cloning." Joe Brown, PAN's Texas Co-Coordinator, brought the patient voice to the table with his powerful testimony. He and his wife, Nina, who has Parkinson's disease, have been active in the stem-cell debate in Washington, DC and at home in Texas. Mr. Brown's appearance as a member of the Parkinson's community who supported SCNT research was especially important, as the hearing was guided primarily by those who oppose this research.

Following Mr. Brown's testimony, PAN's Chief Executive Officer Amy L. Comstock headed to the Hill on March 29 for a hearing of the US House of Representatives Appropriations Subcommittee on Labor, Health and Human Services and Education. In written testimony (posted on both PAN's and the Subcommittee's websites), Ms. Comstock first emphasized the need to prevent the proposed freeze in funding for the National Institutes of Health (NIH). Flat-funding would, in effect, constitute a significant cut, as the Biomedical Research and Development Price Index (BRDPI) is estimated to have increased by 5.5 percent for fiscal year (FY) 2005, and will likely increase by 4.1 percent for FY 2006 and 3.8 percent in FY 2007. In order to not lose ground in ongoing research, we support the medical research advocacy community's recommendation for a five percent increase above the FY 2006 funding level for NIH.

Ms. Comstock also suggested several specific ways in which NIH's priorities in conducting Parkinson's research might be shifted to immediately focus on more translational research that can advance basic scientific discoveries into therapies. She said that in order to offer potential relief for current and future Parkinson's patients, a refocus of resources by the NIH is needed.

To accomplish this goal, Ms. Comstock suggested that Parkinson's disease research at the NIH be conducted based on an action plan or a strategic plan to ensure that promising areas of research are pursued.

Retirement of a leader
In related news, it is with gratitude and affection that we relay Congressman Lane Evans' (D-IL) recent announcement that he will not run for re-election this coming November. Congressman Evans, who lives with Parkinson's, has been a true champion of Parkinson's issues on Capitol Hill and great friend to our community. As both a Co-Chair and Founder of the Congressional Working Group and Caucus on Parkinson's Disease, he has been tireless in his dedication to the fight against Parkinson's. It is with great respect that we wish Congressman Evans well, and we thank him for his many years of service.

We ask that everyone in the Parkinson's community follow Congressman Evans' shining example, and help us keep the voice of Parkinson's loud on Capitol Hill. Write or call your representative today and express your support for these issues that are crucial to the Parkinson's community. For more information on PAN or to get involved, visit You can also visit the PAN website to view the webcast of the 12th Annual Forum.

Mary McGuire Richards is the Director of Government Relations at PAN. Founded in 1991 and based in Washington, DC, PAN is the unified education and advocacy voice of the Parkinson's community. PDF uses part of your contributions to support PAN - $150,000 in the current year.