Friday, November 9, 2012

Remembering Arlen Specter

When I learned of the death of former Senator Arlen Specter two weeks ago, I thought immediately of two people in the Parkinson’s community who I knew would strike just the right chord to pull me out of a mood of regret for the loss of a true champion of medical research in America.

I got it right.

One was of these was Jim Cordy  – a veteran of the 1990’s “Washington Wars” to get Parkinson’s disease recognized – and funded -- as a national priority.  He was a close colleague of Joan Samuelson (read on), the founder of the Parkinson’s Action Network.  And he was best known (in addition to the frogs he raised, and that his wife Deborah tolerated, in their suburban Pittsburgh home) for the hour-glass that he carried everywhere, setting it on the desk or podium before him to symbolize what the passage of time means for someone who lives with Parkinson’s disease.   In Parkinson’s, he would say, every moment counts; every hour drains energy from a productive life; every year is another finger of reproach wagged at those of us who use other, more prosaic, measures of time, like annual budgets or fundraising plans.    

During our telephone conversation, Jim reminded me of the hour glass, and said he remembered how Arlen, then Senator Specter (R, PA) , ranking member of the Subcommittee on Health and Human Services, went to floor of the Senate during the debate on the federal support for research involving embryonic stem cells, referring repeatedly to “Jim Cordy’s hour glass, reminding us that time, for someone with Parkinson’s, is not neutral!”

My other witness was Joan Samuelson, the gifted and charismatic California lawyer who was diagnosed with Parkinson’s disease in her forties; went to Washington during the administration of the first President Bush to fight for federal support of research involving the cells of discarded fetuses; then, in the mid-1990s, founded the Parkinson’s Action Network which now, under the leadership of the Amy Rick, serves as the PD community’s nerve center and power source on public policy issues.

Joan remembers Senator Specter’s unremitting commitment to medical research, the Republican counterpart to the equally indefatigable Tom Harkin (R, IA), his partner on the HHS subcommittee.  Together, they spearheaded the memorable drive to double the NIH budget between 1998 and 2003 – a spectacular achievement  that transformed the capacity of the United States to lead the world’s medical research and pave the way to new cures.  (She also reminded me, with admiration, of Senator Specter’s final legislative battle, in which he almost single-handedly persuaded Congress to add $10 billion to the NIH research budget as part of the stimulus program that President Obama put forward as a means to shake the country out of the 2009 financial crisis.)

As for me, I best remember Arlen Specter – dubbed by his fellow-Pennsylvanian Jim Cordy as the leader of “Arlen’s Army,” a play on the nickname (“Arnie’s Army”) of that other famous Pennsylvanian, the golfer Arnold Palmer – at the memorable Congressional hearing in the Fall of 1999, when the Senator and his friend Tom Harkin presided over a public hearing of the subcommittee on the subject of Parkinson’s disease research.  The hearing featured Dr. Gerald Fischbach, the head of the National Institute of Neurological Disorders and Stroke; Jim Cordy (armed with his hour-glass, of course!); Joan Samuelson; and the star, recently “out” with his PD diagnosis, a winsome, charming, young Canadian-born actor of the name Michael J. Fox.

PDF helped pull this event together and I was never more proud than when I saw this titanic cast playing out the Parkinson’s case before a national audience.  It wouldn’t have happened without Arlen Specter, and the PD community has never been the same since.

Goodbye, Arlen.  You did us proud.

1 comment:

Sarah King said...

Thank you for this. As a new(er) advocate with the Parkinson's Action Network it is wonderful to read of Arlen Specter's support for medical research and of the early days of PAN.