Federal Update: What's Going on in Washington

August 2011 Monthly Message

Parkinson's disease and Parkinsonism: Are they the same thing?
Federal Update: What's Going on in Washington
Branded vs. Generic Medications in Parkinson's Disease: Does it Matter?
Hettie Molvang is a Support Group Champion
The Future of Translational Research at the National Institutes of Health:
    NIH Director Francis Collins Releases Commentary Paper about New Research Center

Parkinson's Action Network Welcomes Former Congressman John Spratt to its Board of Directors
PAN joins the Alliance for Regenerative Medicine
Join us for the 2011 Morris K. Udall Awards Dinner
PAN CEO Amy Comstock Rick Featured on Comcast Newsmakers
Parkinson's in the Media


Federal Update: What’s Going on in Washington
By Becca O’Connor, PAN’s Director of Government Relations

The Federal Debt Ceiling Debate and Its Impact on Health Policy: We Need Your Voices

Earlier this month, U.S. policy makers reached an agreement to raise the United States’ debt ceiling and limit discretionary spending in the years ahead.  PAN has been closely monitoring the debates and their anticipated impact on health care.  As aptly summarized in this message from our colleague, Mary Woolley, president and CEO of Research!America, while there are still many unknowns and additional decisions to come, one thing is abundantly clear: now, more than ever, our community’s vocal support for continued federal funding for medical research for treatments and a cure, is critical.

And the timing is ripe for advocacy outreach. During the month of August, U.S. Senators and Representatives will be back at home working and meeting with constituents.  The August Recess provides the perfect opportunity to advocate for the Parkinson’s community by reaching out to and speaking with Members of Congress, either individually or at a Town Hall meeting.  To learn more click here.

Meanwhile, the Parkinson’s Action Network (PAN) continues to lead efforts on the Hill and across multiple government agencies to make sure funding for Parkinson’s research is top-of-mind on the legislative and federal policy agenda.  Below are some updates on just a few of the things we’re working on right now:

NIH Funding, including NCATS and CAN

As you may have read in our related newsletter article, on July 6, the journal Science Translational Medicine published a commentary written by National Institutes of Health (NIH) Director Dr. Francis Collins, describing in detail his plans for a new National Center for Advancing Translational Sciences (NCATS) at NIH, which PAN supports.  Translational research is the process by which basic scientific discoveries are more rapidly "translated" into new ways of diagnosing, preventing, and treating medical conditions

The mission of NCATS will be to move high-need medical cures through the development pipeline faster – giving hope to millions of patients and their families throughout the country.  NCATS will allow researchers unmatched opportunities to focus on the reengineering of the translational process, and will complement translational research being carried out elsewhere in NIH and the private sector.  The establishment of NCATS will connect expertise from the public and private sectors in a spirit of cooperation and precompetitive transparency.

While NIH hopes to open the new center in the fiscal year beginning October 1, 2011, it cannot do so until it is given an appropriation by Congress.  In the interim, NIH is moving ahead to complete the necessary preliminary work of establishing NCATS.

In July, PAN circulated and submitted letters to U.S. House and Senate Appropriators with nearly 150 organizational signatures in support of NIH FY 2012 funding and establishment of the NCATS. Want to share your support? Here is a template Letter to the Editor you can customize and submit to your local newspaper in support of NIH funding.

National Neurological Diseases Surveillance System Act

On July 20, Representatives Chris Van Hollen (D-MD) and Michael Burgess (R-TX) introduced H.R. 2595, the National Neurological Diseases Surveillance System Act (NNDSSA) in the House of Representatives.  The House bill mirrors the Senate version, S. 425, introduced in March by Senator Mark Udall (D-CO). PAN thanks the many advocates who have responded to our action alerts and contacted their Members to cosponsor the legislation. This legislation will establish, for the first time, a permanent and coordinated neurological disease data collection system at the Centers for Disease Control (CDC).  If you have not already done so, please take a moment to ask your Senators and Representative to cosponsor this important legislation or thank them if they’ve already done so!

FDA Funding

Advocacy efforts in support of FDA FY 2012 funding continue to focus in the Senate.  In June, in response to the House of Representatives’ approval of cuts of approximately $285 million to FDA’s budget, PAN submitted a letter to the Committee and Subcommittee chairs citing our support for robust funding for FDA funding to hasten the availability of much-needed new treatments and a cure for Parkinson’s disease.  PAN continues to work in coalition with The Alliance for a Stronger FDA to highlight the need for FDA funding.

MDUFA and PDUFA Reauthorization

Two pieces of federal legislation, the Medical Device User Fee Act (MDUFA) and the Prescription Drug User Fee Act (PDUFA), which impact the Parkinson’s and other disease communities, will expire in the fall of 2012 if not reauthorized by Congress.  PAN and other patient advocacy groups are participating in ongoing meetings at the FDA to ensure the resulting bills reflect patients’ interests, including ensuring patients have input in important discussions on topics such as how the FDA evaluates and balances benefit risk, and what opportunities exist for patients to provide input and feedback to FDA reviewers. We will keep you informed of ways you can become involved in this advocacy work in the future.

Department of Defense Neurotoxin Exposure Treatment Parkinson’s Research (NETPR)

PAN continues to spearhead advocacy for Congressional support of the Department of Defense (DoD) Neurotoxin Exposure Treatment Parkinson’s Research (NETPR) Program. In June, the House Appropriations Committee passed a $4 million cut to the program for FY 2012, and Senate appropriators are now considering their budget.  PAN continues to advocate and actively monitor support for the program as the process moves forward.  For additional information about the program, please click here.

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