Date:   Wednesday, April 8, 1998 7:02:39 PM
From:    Michael Claeys, Parkinson Action Network     [log in to unmask]

"I'd like to respond to Karen Bardo's request for information on the
funding of the Udall Act and ways to contact legislators.

First I would like to address the responses she quoted from the Maine
Senators.  The first response she quoted, "You will be pleased to learn
that in the final version of the Departments of Labor, Health and Human
Services, and Education and Related Agencies Appropriation Bill, a total

of $100 million dollars has been appropriated to fund basic research on
Parkinson's disease" is unfortunately inaccurate.  The final version of
the FY98 Labor/HHS Appropriations bill included an AUTHORIZATION of up
to $100 million for research focused on Parkinson's, but the vast
majority of that money has not yet been appropriated.  That is what our
effort this year is all about--getting that funding.

As for the second response, the following statement is accurate, "while
the bill authorized the National Institutes of Health to spend $100
million on Parkinson's research and education, appropriations bills
generally do not provide line-item funding for disease-specific
research.  Instead, in the final report on the appropriations bill, the
conference committee stated that it was their understanding from NIH
that sufficient funds were available within the amounts provided in the
Institute's FY 1998 budget to expand research on Parkinson's."

The next part of the statement requires more explaination  "(T)he
projected spending on Parkinson's research for FY 1998 is estimated at
$98.5 million."  This amounts to the NIH party line, and reflects
neither an accurate representation of the federal Parkinson's research
effort nor the intent of the Udall Act as passed by Congress.

The NIH has two classifications of research into a given disease, like
Parkinson's, cancer or Alzheimer's.  These classifications are "direct"
and "related," and as the names indicate, direct research is much more
focused on the specific disease in question, while related research is
often more basic investigations, or studies of vaguely similar things
that may have some potential application to the disease in question.
For example, related research into Parkinson's disease could include any

research into neural cell death or neurodegenerative properties--and we
even have past examples of studies into AIDS-related dementia and drug
addiction being classified as "Parkinson's related research."  Accepting

the reality that in science seemingly unrelated investigations can
provide valuable insights or even breakthroughs in unintended areas, it
still seems prudent that with Parkinson's already having so many
identified areas of promising research the limited research dollars
should be as focused as possible.

If you look, as we have done, at other diseases you see the vast
majority of research dollars are classified as "direct."  For example,
from 1991 through 1995 (the last years NIH would provide us with data)
of the total research funding for both breast cancer and AIDS, direct
research accounts for 99% of the total.  98% of all cancer research is
direct.  70% of all Alzheimer's research is direct.  With Parkinson's,
however, only 43% of the total funding is direct.  In fact, Parkinson's
is the only disease we've found where related research accounts for more

funding than direct.

So, while NIH claims they are going to spend an estimated $98.5 million
in FY98, that figure reflects the total of both direct and related
research, with direct accounting for less than half.  In fact, on April
8, 1997 in responding to an inquiry from Senator John McCain, the NIH
estimated they would spend only $35.1 million in direct Parkinson's
research in 1998.  We expect that number will actually be slightly
higher given the passage of the Udall Act and a supposedly unrelated
NINDS initiative to fund up to three Parkinson's disease Centers of
Excellence, but we would be surprised if the FY98 direct funding for
Parkinson's exceeded $40 million.  And that would be right about the 43%

of total funding we've seen throughout the 1990's.

The Udall Act authorizes up to $100 million in "research focused on
Parkinson's disease," and it is the intent of the bill--and of those in
Congress who supported it--that that means $100 million in direct
Parkinson's research.  (Of course, as originally drafted, the Udall bill

said exactly that, but Congressman John Porter modified the language
during last year's Labor/HHS Appropriations Conference.)

I recognize that this is a long and rather complicated explaination, but

this is the reality of our situation.  The message you deliver to your
Senators and Representatives should be much more direct and clear:
ensure $100 million in DIRECT Parkinson's research--fully fund the Udall

Act!!  To help you, below is a draft of a sample letter which you can
use and modify to tell your personal story, so that your message will be

as real and compelling as possible.

Furthermore, if you have any questions, comments or requests, please
don't hesitate to contact me either by email at "[log in to unmask]" or call
me at (800) 850-4726.

Michael Claeys
Community Outreach Coordinator
Parkinson's Action Network
818 College Avenue, Suite C
Santa Rosa, CA 95404

SAMPLE LETTER TO CONGRESS

Date


The Honorable ____________________, M.C.
United States House of Representatives
Washington, DC 20515
 OR
The Honorable ____________________
United States Senate
Washington, DC 20510

Dear Representative/Senator _________:

I/we seek your support for an action which will benefit the Parkinson's
community's great need for increased research funding.  I/we ask you to
support specific appropriations to fully fund the Morris K. Udall
Parkinson's Research and Education Act, which President Clinton signed
into law November 13, 1997.

Authorizing up to $100 million in Parkinson's-focused research, this
historic legislation is the first to mandate expansion and coordination
of the federal Parkinson's research agenda. Continued Congressional
leadership is required to ensure that the maximum possible funding is
allocated to the most promising research this year.

I care because I [my husband/wife/parent etc.] suffer from Parkinson's
disease, a progressive neurological disorder that destroys brain cells
controlling motor function.  Available treatment only partially
alleviates the resulting stiffness, tremor and slowness of movement.
Eventually it leaves its victims unable to walk, to talk, even to move.
[Revise for your personal story]

In addition to these devastating human consequences, Parkinson's
financially cripples our nation: It costs an estimated $25 billion in
direct and indirect costs per year.  In 1997, U.S. support for direct
Parkinson's research was only estimated to be $34 million, or a mere $34
per year per patient, which is far less than most other diseases
receive.  The Udall Act has authorized a robust increase in this effort,
but without adequate appropriations the Parkinson's community, and our
country, will continue to suffer.

This is unfair to the Parkinson's community, and it ignores a tremendous
scientific opportunity.  Scientists say they have the potential for
major treatment advances, and very possibly a cure of Parkinson's, in
this decade.  But this will not happen without an adequate research
investment.

Last year with passage of the Udall Act, Congress took the first step to
reprioritizing Parkinson's research.  I/we urge you to continue this
progress by appropriating sufficient resources to fully fund the $100
million Parkinson's-focused research effort.

Thank you for your attention.  I/we look forward to your response.

Sincerely,

(Your name, address, and phone number)


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From: "Parkinson's Action Network" <[log in to unmask]>
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Organization: Parkinson's Action Network