Date:   Tuesday, April 14, 1998 1:45:55 PM
From:   [log in to unmask]
Michael Claeys
Community Outreach Coordinator
Parkinson's Action Network
(800) 850-4726

I would like to comment on the April 13 message from Ken Becker, as I
think he expresses views probably held by a lot of people in the
Parkinson's community and US public as a whole.  He wrote:

"Margaret, I am interested in the cure for Parkinson's as well as ALL
the
diseases that cause what should be the best years of life to become a
time of
suffering, pain, and discomfort. I am not a rocket scientist, but if we
have
about 250 million people in the U.S.  each 100 million dollars needed to
cure
each disease would cost each of us less than one cup of  coffee a YEAR!
...........So if I had to give up coffee for a week, in exchange for a
cure
for Parkinson's , Alzheimers, cancer, heart disease, diabetes, etc, I
would be
willing to do that.  Am I missing something?   I may have oversimplified
the
situation,  but I don't think so!                 [log in to unmask]"

While Mr. Becker's general sentiment is right on the money, he has
oversimplified things in several important respects.  First of all, $100
million is the figure the Udall Act authorizes for research in 1998 to
hasten the discovery of a cure or vastly more effective treatment for
Parkinson's disease.  No one in the Pd community, that I am aware of, is
willing to state that $100 million--or even the full $300 million, and
potentially more, authorized by Udall--will "cure" Parkinson's.  It's
just an informed statement that a significantly higher investment in Pd
research will very like result in significantly improved therapies in
the  near future.

There is even more uncertainty for other diseases.  There is no
assurance--or even any indication--that a one-time $100 investment will
cure any disease.  Hundreds of millions, and in some cases, many
billions of dollars have been spent on research into various diseases
without producing a cure.  This is not said to be negative, just
realistic.

We are continuing to work very hard to see that the Udall Act receives
full funding as soon as possible because we believe that given
additional resources, Parkinson's researchers will achieve the
long-awaited breakthrough--and do so soon.  Additionally, we believe
that doubling the budget of the NIH will not only help speed the
discovery of the Parkinson's cure, but will also help millions of ailing
people in this country and around the world.  It will also help lesson
the cruel zero-sum-game currentl going on where advocates for individual
diseases are forced to compete for scarce federal research funds.  These
are our tax dollars we are talking about, and we have every right to
have a voice in how they are spent.  It's about making medical research
a higher priority.

One final note--Mr. Becker represents the views of most Americans when
he offeres to make a small sacrifice to support increased medical
research.  Poll after poll shows that a majority of Americans are
willing to see cuts in other programs, and even pay higher taxes, if
they know that money is going for medical research.

*************

I also want to commend Phil Tomkins on his April 14 message detailing
current legislation aimed at doubling or otherwise increasing the budget
of the NIH, and try to clear up a little of the confusion he expressed.

The President's budget request--introduced following the State of the
Union Address--is typically the starting point of the debate on the
federal budget for the next fiscal year.  The House and Senate each pass
their own version of a budget, crafted with an eye towards the others,
but really determined by the different priorities and political
realities in each body.  Each of these three versions of the budget
could potentially influence Parkinson's research funding, but what
really matters is the final budget which evolves from the three versions
and is able to pass the House and Senate and be accepted by the
President.

There is still a long way to go in the fiscal year 1999 budget process.
The President has submitted his budget request.  It includes a large
increase in the NIH budget, although no specific mention of Parkinson's
funding.  However, his increase is to be paid for with moneys derived
from a settlement with the tobacco companies--and as anyone who has been
watching the news knows, such an agreement is far from wrapped up.

The House and Senate are still working on their fiscal year 1999
budgets--and will be for some time.  The ongoing grassroots lobbying
efforts and the June 14-17 Public Policy Forum in Washington, DC are
intended to influence the House and Senate as their budget deliberations
proceed.

The "budget resolution" that passed the Senate, S.Con.Res.86, is what's
called a concurrent resolution, which means its legislation expressing
only an opinion or "sense of the Congress," it is a non-binding piece of
legislation.  That is not to say it is without meaning, but it is not
the actual budget with actual, final numbers to be paid for with real
money.  As noted below in an exerpt from the Thomas Page, it "sets
forth" the budget for the next five years, which really is just a
statement of what the authors and supporters would like to see
prioritized in the next five budgets.  Unforseen events and political
realities will very likely produce budgets that are significantly
different.

 "S.CON.RES.86: An original concurrent resolution setting forth the
congressional budget for the United States Government for fiscal years
1999, 2000, 2001, 2002, and 2003 and revising the concurrent resolution
on the budget for fiscal year 1998.
Sponsor: Sen Domenici .- LATEST ACTION: 04/02/98 Measure passed Senate,
amended, roll call #84 (57-41)"

So, while we should be aware of this action taken by the Senate, we also
need to stay focused on the fact that the real fiscal year 1999 budget
is still being crafted--and will be for the next several months--and is
still able to be influenced by the Parkinson's community.

Please refer any questions, comments or requests to:

Michael Claeys
Community Outreach Coordinator
Parkinson's Action Network
(800) 850-4726
[log in to unmask]