192 Days To Mt. Kilimanjaro – Senator Coburn Stops National Data System for Neurological Diseases

In November I republished a story printed by the Parkinson’s Action Network (PAN) detailing the need for individuals to contact their local state representatives asking them to help urge Senator Tom Coburn, Senator from Oklahoma not to stop passage of HR 1362/S1273 (the National Neurological Surveillance Systems Act) which came up for vote this week during the lame duck session.  You can see a reprint of this post at 223 Days To Mt. Kilimanjaro – Your Help Is Needed.

The bill was designed to create a national data system for all neurological diseases, including Parkinson’s disease.  In November, the bill was passed  by the House of Representatives and it was hung up in the Senate.  Senator Tom Coburn seemed to be the only one with objections to passing the bill and without his vote the bill did not stand a chance of passing.

Based on PAN’s diligence, this bill was supported by 206 members of the House.  PAN helped secure 30 Senate votes to sponsor the bill. Action alerts helped get the House Energy and Commerce Committee to pass the bill unanimously and the full House of Representatives passed the bill on a voice vote.  Unfortunately, the bill was stopped in the Senate by the one and only Senator Tom Coburn MD. 

I have written an email to Senator Coburn to voice my opinion today.  As a member of the medical community, I do not understand how he could stop this legislation when so many other Senators and House members supported it.  Perhaps the onipitant Senator Coburn will write back to me to enlighten me on his decision.   

Below is a reprint of the year end email from Parkinson’s Action Network.

Parkinson’s community,

There’s no doubt that 2010 was a challenging political year in Washington.  Even so, we managed very well on Parkinson’s issues and ended the year with many successes because of you.  PAN would like to thank you for your tireless advocacy throughout 2010, and we look forward to working with you on our issues in the coming year.  Below is an overview of our key legislative priorities, and how we fared this year.
Funding for Parkinson’s Priorities:
Congress passed a Continuing Resolution (CR) on December 21 to keep the federal government funded through March 4, 2011.  The CR provides government agencies and programs with the same level of funding as they received last year. 

For Parkinson’s programs, this means:  1) no increase in research dollars for the National Institutes of Health (NIH); 2) no money is yet appropriated to start the new Cures Acceleration Network at NIH; and 3) the Department of Defense Parkinson’s research program will be maintained at $25 million.

Next spring, Congress will need to make final decisions on funding levels for the remainder of the fiscal year, which runs until next October.  House Republicans have voiced their support for funding cuts, so this could get contentious before March 4.
National Neurological Diseases Surveillance System Act:
We came so far!  We got the bill introduced last year.  PAN advocates helped secure 206 members of the House as co-sponsors.  Our community got 30 Senators to co-sponsor it.  Action Alerts helped get the House Energy and Commerce Committee to pass it unanimously.  We even got the full House of Representatives to pass the bill on a voice vote.  But unfortunately, the National Neurological Diseases Surveillance System Act (H.R. 1362/S. 1273) was stopped in the Senate by Senator Tom Coburn from Oklahoma.
Despite the great show of support for this legislation, we could not secure passage of the bill in the Senate.  We will restart the process for passage of this important bill when the 112th Congress convenes in January.  Stay tuned for Action Alerts on how you can help.
Access to Medicare Therapy Services:
Throughout the year, PAN fought to maintain access to medically necessary Medicare therapy services.  There is an annual limit on the amount of outpatient therapy services for which an individual can be reimbursed ($1,870 in 2011).  Those patients who exceed the cap can still get therapy services for no additional cost through a “medically necessary” exceptions process, but the exceptions process was set to expire on December 31.

Our efforts paid off and on December 9, Congress sent President Obama a bill that extends the exceptions process through all of calendar year 2011.  This means that people living with Parkinson’s disease who need medically necessary therapy services will not have to pay out-of-pocket next year.

The New 112th Congress:
As we look to the new incoming Congress, all eight of our Co-Chairs of the Congressional Caucus on Parkinson’s Disease – four Democrats, four Republicans; four House, four Senate – will be returning.  One of our Co-Chairs, Rep. Fred Upton (R-MI), takes over as Chairman of the House Energy and Commerce Committee, which handles health legislation.  With 96 freshman members of the House and 16 new Senators, we will have a lot of new members to recruit for the Congressional Caucus on Parkinson’s Disease.

Your advocacy efforts will remain essential in the coming year as we work on these and other important issues for the Parkinson’s community – and as we all continue to work for better treatments and a cure for Parkinson’s.  Thank you for all that you do.

Happy Holidays from all of us at PAN!


John Schall
Deputy Chief Executive Officer

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