At 11:47 PM 8/1/97 -0400, Jim Cordy wrote:
>I have been pondering how to describe the special moment that many of us
experienced in Washington on July 15, for the next edition of our local
newsletter....
Jim, I don't think I did as well as your article in writing my article for
the Dallas Area Parkinsonism Society, but I'd like to share it with the
list anyway:=20
"I want to be a taxpayer!" This was the opening line of Candyce Drum of
Austin, TX, one of the "Advocacy Minute" speakers that we heard. This
person has had to retire from her occupation and receive SSD benefits
because of her Parkinson's. To me this set the tone for the Parkinson's
Public Policy Forum, in Washington, DC, in July, more than anything else
that was said. Instead of being a source of funds for the government, she
is a drain on their funds. And she doesn't like it. She wants to be
productive. And she wants to rid herself of the curse of Parkinson's=
Disease.
But even more important, she is an answer to the question, "Where will the
funds come from to pay for the cost of conquering Parkinson's Disease?" It
doesn't take a mathematical whiz to figure that the estimated payoff of $25
billion per year - yes, that's billion with a "B" - is worth an estimated
expenditure of $100 million per year for the next five years - and that's
what we're asking for in the Udall Bill.
Nor was that the only high point of the forum. Other "Advocacy Minute"
speakers told how they presented ideas to get them across to the
Congressmen and Senators who shape our destiny. Speakers from the research
area validated how close we are to finding solutions to the problems of
Parkinson's disease - both by minimizing the symptoms and by eliminating
the causes. They need time and they need money. We also learned about the
obstacles we faced and ways to get around them.
My personal experience was also highlighted by a visit to a Congressperson
who had been waffling as to whether or not to cosponsor the Udall Bill.
She had wondered about whether or not the earmarking of funds was a good
idea, and correctly so. But when I pointed out that the spending in 1994
was $26 per patient per year, compared to over $1,000 per patient for HIV,
her resistance faded. And I had paperwork with me to substantiate that
fact. And it didn't hurt to point out that my medications ran $200 per
month before insurance.
But with 63% of the Senate and over 55% of the house already cosponsoring
the Udall Bill, our job is not done. It is still necessary to get the
bill to the floor for a vote. It is still necessary to overcome the
objections of bureaucrats whose personal agenda are different from ours.
And it is still necessary to monitor the spending so that we get what we
need for our money. From time to time we will still need the support of
the Parkinson Community until this thing is licked=85and Candyce Drum starts
paying taxes again.
Arthur Hirsch [] [log in to unmask] [] Lewisville, TX=20
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=20
Always Remember This: =20
Happiness Is Right, So Choose Happiness =20
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