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The Voice from Washington

Parkinson's on Capitol Hill: A Legislative Update

Mary Richards

It is an exciting time for advocates and the staff at the Parkinson's Action Network (PAN) as we watch our hard work on major Parkinson's-related policy issues come to a head in fall 2005. Our main issues are three: the Udall Act; broadening federal support for stem-cell research; and the Neurotoxin Exposure Treatment Research Program (NETRP) of the Department of Defense.

Udall Act amendments
In 1998, Congress passed and President Clinton signed the Morris K. Udall Act for Parkinson's Research, the first piece of legislation to authorize federal funding dedicated to Parkinson's research. Seven years later, PAN is now working with the Congressional Working Group and Caucus on Parkinson's Disease to pass legislation that would amend and re-invigorate the Udall Act.

On July 28, Congressman Lane Evans, a Co-Chair of the Working Group on Parkinson's Disease of the House of Representatives, introduced the Udall Act Amendments (HR 3550) that propose improvements in the coordination and planning of Parkinson's research at the National Institutes of Health (NIH), and strengthen the Udall Centers program. This program was created as part of the original Udall Act to provide funding to 12 leading centers for research focused on Parkinson's disease. In addition, the bill requires federal agencies to address the lack of information we have about who has Parkinson's disease and why. In the Senate, the Caucus on Parkinson's Disease (counterpart to the House Working Group) is expected to introduce similar legislation soon after the August recess.

The success of the original Udall Act was widely attributed to the outstanding work of Parkinson's advocates across the US in 1997, and we are once again looking to tap that energy. All members of the Parkinson's community should make their voices heard and encourage their Members of Congress to support and pass the Udall Act Amendments. Updates on the status of the issue can be found at www.parkinsonsaction.org.

Stem-cell research legislation
As was reported in the spring issue of News & Review, the Stem-Cell Research Enhancement Act of 2005 (HR 810) was approved by the House of Representatives, in large part due to efforts of advocates for Parkinson's and other diseases. With little time to celebrate this important victory, advocates shifted their efforts to securing the passage of companion legislation in the Senate.

On July 29, Senate Majority Leader Bill Frist delivered an unexpected boost to the bill's prospects when he announced that he had reversed his opposition to embryonic stem-cell research (which he had earlier shared with President Bush), and would now fully support HR 810. His announcement came amidst a flurry of "decoy" bills introduced by opponents of HR 810 - bills that look as if they favor some aspects of stem-cell research but which would actually delay or ban important research and potential cures for patients and their families for years.

Our message continues to be that HR 810 is the only legislation that will expand the current federal policy on stem-cell research within strong ethical boundaries that are widely supported by the public. Senator Frist has set the stage to bring HR 810 up for a positive vote in the Senate when Congress returns from its August recess.

If the Senate approves the bill, it will then go to President Bush, who ultimately determines if it becomes law. He has said that he will veto it. We need to let him know that he, as Senator Frist has done, needs to listen to the views of an overwhelming majority of the electorate and change his mind. Those of us who are in favor of the legislation are working to increase public support with the hopes of persuading President Bush to sign the bill, if and when he is presented with it.

NETRP
In the winter issue of News & Review, The Voice from Washington provided an update on the activities of the NETRP, a key element in the federal Parkinson's research portfolio. We described how advocates are working to increase next year's funding for the NETRP from $26 million, the level of funding for each of the past two years, to $40 million. Recent rumors that the program might be cut prompted the Parkinson's community to embark on a major push to emphasize the importance of this program among key members of Congress. Because of this pressure, the House voted a slight increase in funding, to $26.5 million - disappointing, but not as bad as it might have been.

Moving forward, we expect the Senate to begin working on the Department of Defense bill, which includes NETRP funding, when it returns from recess in September. If we are successful in achieving our $40 million goal there, the difference will need to be worked out in a Conference Committee representing the Senate and the House.

For more information and updates, sign up for PAN's Action Alerts at www.parkinsonsaction.org. These alerts will guide you in contacting your members of Congress, via our Legislative Action Center, to ask for their support for NETRP funding, stem-cell research and the Udall Act Amendments.

Mary 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 an important part of your contributions to support PAN - $150,000 in the current year. For more information on how you can join PAN, visit their website or call (800) 850-4726.