RTK.NET Mail 131945 Mar 11 16:15:33 1996
>To anyone that viewed the symposium:
>One of the dovtors was supposed to make a pitch for grassroots
>support of the Udall Bill. Did that happen and what was said if it
>did?
---------+---------
I believe it was Dr. Silver who made the pitch, and he did urge everyone
to call or write their representatives and ask them to support this
legislation. As others have mentioned, Dr. Olanow then made the point
that it was important to fund the best research regardless of what
disease the research was targeted towards, using Alzheimer's as an
example of a disease whose research could yield important results for
our understanding of Parkinson's disease. I think Dr. Olanow's comment
highlights one of the challenges we face in advocating for more money for
Parkinson's research: How do we make people aware of the gross funding
inequities for Parkinson's research without pitting ourselves against the
other medical research advocates?
I think pointing out the comparative underfunding of Parkinson's research
is an important way of giving people a point of reference for understanding
the need for a major initiative like the Udall Bill. Alzheimer's advocates
have been very successful at getting more media attention and federal and
private research dollars aimed at finding a cure for that disease. The
December issue of the PAN Action Reporter has a graph showing research
expenditures
from 1980-1994, and the budget for AD has grown far more than four times
as fast as the PD research budget. I don't see this as a cause for
complaint, just an incentive to go and do likewise.
One part of the Udall pitch that concerned me was that Dr. Silver seemed
to be saying that the Udall Bill would greatly increase Parkinson's
research _primarily_ through establishing and running 10 Parkinson's
research centers around the country. This gives the impression that most
of the money will not be spent at NIH, and Nancy Kassebaum, at least,
has said she won't support the Udall Bill because of the overhead involved
in establishing the centers, but she says she does support increased
funding at NIH. I think there is also confusion about how the centers
would be established, and the Symposium comments could give the impression
that the Udall Bill money would go towards setting up and even building
new facilities rather than using existing facilities in centers which are
already doing basic and clinical research and providing patient care.
But with all my fault-finding, the point was definitely made that everyone
watching should try to do what they could, I just would have liked to
see it made a bit more enthusiastically. I also think the comment about
there being 4million AD patients could leave people with the idea that
the only reason there's a difference in funding is that there is a difference
in the number afflicted, but 4 times as many people doesn't explain the
difference between $26 million and $298 million annual research budgets.
Sherri Cave
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