" '96 THE YEAR WE PASS THE UDALL BILL"
Six more Congressman have signed on as co sponsors -
Oliver, Kildee, Johnson (CT), Volkmer, Manton, Stockman.
" '96 THE YEAR WE PASS THE UDALL BILL"
TO HELP THOSE OF YOU WHO NEED SOME INFO TO TAKE TO YOUR ELECTED
OFFICIALS HERE'S MY HANDOUT. IF WE HAVE ONE PERSON WITH PD VISIT
EACH CONGRESSMAN AND SENATOR WE WOULD PASS THIS BILL GOING AWAY
Udall Bill - Would correct research funding inequities
providing $100 million /year for Parkinson's Disease research.
Major Points:
1) Parkinson's Disease is a dreadful degenerative disease causing much
suffering not only to the 1.5 million patients but also their family.
2) The neuroscientists uniformly agree we know more about Parkinson's
Disease than any other neurological disease. Most think another major
breakthrough is near possibly even a cure. Some think a cure is
possible by the end of this decade. What would be the public's
response if scientists said they could cure cancer in five years?
3) This legislation is cost effective. Conservative estimates are that it
costs society over $6 billion/yr. for Parkinson's Disease. More recent
calculations suggest that number may be as high as $25 billion/yr. It
makes sense to spend $100 million/yr. for five or so years to save $25
billion/yr.
Status:
Senator Hatfield's office feels that the support that the Parkinson's
community has assembled for the Morris K. Udall Parkinson's Research,
Education, and Assistance Act in 1995 is impressive. That support includes
25 Senators and 91 Representatives signed on as co sponsors and has set the
stage for passage of this bill in 1996. Passage in 1996 is crucial as at least
four strong supporters in the Senate (Hatfield, Simpson, Simon and Pell) have
all announced they will not run again.
We plan a national campaign to pass the Udall Bill in 1996. Part of that
effort is a goal of having someone with Parkinson's meet with every Senator
and Representative. We have a compelling case and when presented
personally the overwhelming majority of legislators contacted have agreed to
co sponsor.
Human Fetal Tissue - Of those few who still will not co sponsor the most
common objection is the belief that Parkinson's research is primarily in the
area of human
fetal tissue. However, many co sponsors are Right to Life supporters who have
maintained an open mind, reviewed the facts and ignored hysterical rhetoric.
The facts
are:
1) The Udall Bill does not mention fetal tissue transplants.
2) Less than 1% of Parkinson's Disease research involves fetal tissue
transplants
3) Even those involved with fetal tissue research readily acknowledge that the
result of
their research will not use human fetal tissue. Current work is intended only
to
demonstrate the capability. Ultimately another source of fetal material must be
found.
4) Legislation introduced by Upton enacts several prison penalties regarding
unethical
use of human fetal tissue. The end result is this legislation removes any
incentive to
have even one more abortion associated with fetal tissue research.
Attorney General Janet Reno's announcement that she has Parkinson's
Disease has heightened the general awareness and support for increased research
Speaker of the House, Newt Gingerich, has endorsed increased research
funding. " the number one domestic priority I think we have is our biological
and other
scientific research. It's what makes this country the leader in the world, and
we are doing
everything we can to scrape together every penny for science. ... I think it
would be very
healthy to have a scientific panel that every two years reviewed the whole scale
of
breakthrough and if this panel said eeLook, we have a real shot at Parkinson's
Disease over
here. Let's put the extra resources there"
- Newt Gingrich, from the Charlie Rose talk
show July 1995
Senator Santorum Visits Pitt - Senator Santorum visited the Parkinson's
Disease research laboratories at Pitt on Janurary 18,1996. He promised active
support of
the Udall Bill so that research in this area can not only continuue but
increase.
