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Parkinson's Action Network (PAN) Report

Tuesday March 31, 2015

"Have you ever met anyone with Parkinson's disease?  No? (Handshake). Well, now you have. Pleased to meet you."  So began nearly every meeting my husband Doug, Paul Fussell and I had with six staff of Senators and Representatives from Washington State we met on "Hill Day" as participants in the Parkinson's Action Network (PAN) conference in Washington DC.  PAN is the political presence for all the major organizations representing Parkinson's in the US. With offices in the other Washington, its staff cultivates relationships that are important to the PD community, keeps tabs on legislation and lobbies on our behalf.

We did our best to represent the estimated 25,000 People with Parkinson's in our state, trying to secure funding for the National Institutes of Health (NIH) and other federal agencies to support programs that ranged from funding basic research to obtaining an accurate count of PwPs nation-wide. We laced our meetings with facts embedded with personal anecdotes. Since Paul and I participate in Dance for PD, we invited the staff to join us dancing around their offices. I expect they will remember us.

Figuring that the best spokespersons are those telling our own stories, each year PAN arranges for representatives from each state to come to DC as citizen lobbyists. Hill Day was the culmination of two days of training and meeting with 250 of the most motivated, talented and passionate PD advocates in the country. We learned that in order to induce companies to put their skin in the game, we Must identify biomarkers, actual measurable evidence of change in PwPs.  Biomarkers will be identified through research. Whether the interventions are pharmacological, surgical, or something else, biomarkers will measure progress or lack of it.  Waiting until autopsy just takes too much time.

At an estimated cost of $23,000 per year per patient, numbers matter. Estimates of the number of PwPs nationally ranges from 500,000 to possibly 2,000,000 patients. Knowing the number is important as the size of the market drives investments in product development. There are currently two bills before the House and Senate that address this issue.  HR 292: the Advancing Research for Neurological Diseases Act will create a data collection system at the Centers for Disease Control for neurological diseases, including PD.  Data collected will increase our understanding of disease, including risk factors, disease burden and geography of diagnoses.  This information could lead to new treatment targets and ultimately cures.  The parallel bill in the Senate is S 849.

Neurodegenerative Diseases receive a paltry amount of federal money compared to the problem. The NIH Budget for neurology research should be increased by at least 75% but instead NIH is just trying to tread water, delaying many biological and technological breakthroughs that are close to reality. If every person reading this article contacted their senator or representative to tell their personal story and then used that story as a basis for asking for full funding for health research and support of HR 292 and   S 849, we could possibly make a huge difference. With 50,000-60,000 new PD patients diagnosed each year and the aging population growing larger and living longer, dollars spent on research today will translate to millions, even trillions of dollars in savings in the very near future.  

The math is easy. Translating the wasted time to effects on the quality of life of individuals, our families and loved ones goes beyond metrics and makes one weep. Fire up your computers.  Please add your voice to those supporting these bills. Your voice counts.

It was an honor to go to DC, but not easy.   I slept thirteen hours after dancing my way through Hill Day.  I hope we made a difference.

Learn more about PAN here.

Nan Little, Ph.D.
Guest Writer

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