from Mike Claeys, Parkinsoin Action Network
from Mike Claeys, Parkinsons Action Network, [log in to unmask], 800-850-4726,  818
college Ave. Suite C Santa Rosa CA 95404, 202-628-2079,   1001 Pennsylvania
Ave. NW,    suite 850 North,      Washington, DC 20004

"The Parkinson's advocacy community tallied
another first-time accomplishment this year.  In a
move that is both a legislative and
awareness-raising victory, five United States
Senators joined together to speak out in favor of
increased Parkinson's research.

Participating in what's known as a "colloquy" -- a
conversation submitted to the official and
perminant Congressional Record -- were Udall Act
champions John McCain (R-AZ) and Paul Wellstone
(D-MN), Labor-HHS Appropriations Subcommittee
members Thad Cochran (R-MS) and Larry Craig
(R-ID), and Labor-HHS Appropriations Subcommittee
Chair Arlen Specter (R-PA).  The intent of the
colloquy is to reinforce the report language
included in the Senate Labor-HHS Appropriations
bill and the final Labor-HHS conference report, to
clearly express the intent of Congress with regard
to the Udall Act and Parkinson's research funding,
and also to submit to the record additional
information not included in the report language.

While a colloquy does not carry the force of law,
it does serve to put the NIH on notice that
Congress is intent on seeing Parkinson's research
increased consistant with the mandate of the Udall
Act.  As important is what is said, is who is
saying it -- senior and influencial members of the
Labor-HHS Appropriations Subcommittee, Senators
with experience and influence over medical
research funding issues, and Senators with a
passionate commitment to eradicating Parkinson's
disease.

This colloquy gives the Parkinson's community
additional credibility and leverage as we continue
to work with these Senate champions to increase
the amount and sharpen the focus of NIH
Parkinson's research agenda.  It also demonstrates
the growing political clout the tireless
grassroots effort has helped achieve.  By
cosponsoring and voting for the Udall Act,
Senators Cochran and Craig have been supportive of
our efforts, but this year they took their support
to the next level by becaming active champions on
behalf of the Parkinson's community.  With their
seats on the pivotal Labor-HHS Appropriations
Subcommittee, Cochran and Craig are well
positioned to influence NIH and to work with thier
colleagues, including Chairman Specter, to ensure
that focused research funding is provided.

It is a credit to the commitment of the
Parkinson's community that all these Senators and
their staff were able to work together to achieve
our common goals -- especially given that this
colloquy came together during the extremely hectic
final days of the session.  Each of these Senators
deserves the thanks of the entire Parkinson's
community, but activists in Mississippi, Idaho,
Arizona, Minnesota and Pennsylvania are especially
encouraged to contact their Senators and thank
them for their hard work on our behalf.

All of these Senators can be reached by writing
to:

The Honorable  ___________
United States Senate
Washington, DC 20510

The colloquy appears below as it appears in the
October 21 Congressional Record.  Any questions,
comments or requests for copies of the colloquy
should be referred to PAN's Michael Claeys at
(800) 850-4726 or via email at "[log in to unmask]"


Congressional Record - Senate
October 21, 1998
Colloquy Accompanying Passage of Fiscal 1999
Omnibus Budget Agreement

Parkinson's Disease Funding

Mr. COCHRAN.  Mr. President, one year ago this
body adopted, by a vote of 95 to 3, legislation
increasing our nation's commitment to finding the
cause and cure for a long overlooked, but truly
devastating disorder: Parkinson's disease.  I was
proud to cosponsor and vote for the Morris K.
Udall Parkinson's Disease Research Act, signed
into law as part of the Fiscal 1998 Labor, Health
and Human Services, Education and Related Agencies
Appropriations Act.  The Udall Act authorized $100
million in research focused on Parkinson's disease
to be funded through the National Institutes of
Health in fiscal year 1998, 1999 and beyond.  The
passage of the Udall Act was a great
accomplishment, particularly for the hundreds and
thousands of victims, and their families and
friends, who worked so diligently to bring this
issue to the Congress and make us aware of the
need for additional Parkinson's research funding.
I would also like to commend the Senior Senator
from Pennsylvania, one of the true champions of
medical research, for his strong support of the
Udall Act and Parkinson's research.

Mr. SPECTER.  I appreciate the remarks of my
friend from Mississippi.  He is correct that
Parkinson's disease is a very serious disability,
but one for which medical science does hold great
promise.  In addition, I too would like to commend
the efforts of the Parkinson's community who have
worked tirelessly to achieve passage of the Udall
Act and increase funding for Parkinson's research.

Mr. COCHRAN.  Mr. President, I am concerned that
the National Institutes of Health has implemented
neither the letter nor the spirit of the Udall
Act, and that funding for Parkinson's-focused
research has not increased in a fashion consistent
with Congressional intent.  An independent
analysis, conducted by Parkinson's researchers at
institutions all around the country, of the grants
NIH defined as its Parkinson's research portfolio
for fiscal year 1997 indicates that a majority of
the grants are in fact not focused on Parkinson's
disease.  Only 34 percent of the funding NIH
claims is Parkinson's research is actually
Parkinson's-focused research, as required by the
Udall Act.  As troubling as that is, the study
also found that 38 percent of the funding has no
relation whatsoever to finding a cause or cure for
this terrible affliction.  It is my understanding
from published NIH budgetary documents that $106
million is expected to be allocated to Parkinson's
research in fiscal year 1999.  My concern is that
without more direction from Congress, the NIH will
undermine the intent of the Udall Act by
continuing to classify, as part of its
Parkinson's portfolio, research that is not
focused on Parkinson's disease and, in doing so,
will allow meritorious and much-needed Parkinson's
research projects to go unfunded.  I propose that
a hearing be held early in 1999 to address and
clarify these matters.

Mr. SPECTER.  The gentleman has brought up
important issues, which warrant further
discussion.

Mr. CRAIG.  As a sponsor of the Udall Act and
supporter of Parkinson's research funding, I
appreciate the Chairman's interest in these
matters.  The NIH claimed to spend more than $89
million on Parkinson's research in 1997.  The
Congress set a baseline authorization of $100
million for Parkinson's research in the fiscal
year 1998 bill making NIH appropriations and
clearly stated in report language that
Congressional intent was to increase the
commitment of NIH resources to Parkinson's.  Close
review of NIH's
Parkinson's funding practices indicates that most
of the research funding they define as Parkinson's
is, in fact, not focused on Parkinson's at all.
The NIH claimed to spend more than $89 million on
Parkinson's research, in FY 1997.  In reality, we
later discovered that less than $31 million--just
more than one third--of that research was truly
focused on Parkinson's. Obviously there seems to
be some disconnect here.  Congress needs to be as
clear as possible when communicating our intent to
NIH, and diligent when overseeing their funding
practices with regard to Parkinson's.  I agree
with Senator Cochran that hearings should be held
early next year to address these issues, and I
look forward to working with him, the Chairman,
and others to see this resolved.

Mr. SPECTER.  I thank the gentleman from Idaho and
look forward to future discussions on his
suggestions.  It is a pleasure to recognize the
sponsor of the Udall Act, and someone who remains
very close to Mo and the Udall family, the
distinguished Senator from Arizona.

Mr. McCAIN.  I thank my friend from Pennsylvania.
The Senator is correct that this is an issue of
personal importance to me, and I appreciate his
support as we work to defeat this terrible
disease.  I would also like to acknowledge the
tremendous efforts of the Parkinson's
community--courageous individuals in my state and
all across the country who have worked so hard to
pass the Udall Act and continue to work to achieve
its full funding.  There are an estimated one
million Americans living with Parkinson's disease,
and the nature of its symptoms are such that they
impact heavily on families and loved ones as
well.  Add to these staggering human costs the
fiscal burden of health care expenses and lost
productivity, and it's easy to see that
Parkinson's deserves to be a higher national
priority.  Parkinson's disease also represents a
real research opportunity, where an investment of
funds is likely to yield improved therapies sure
to reduce both the personal and financial costs to
our families and our nation.  To realize this
opportunity, though, it is up to Congress and the
NIH to ensure that these funds get allocated to
research focused on Parkinson's.  Chairman Specter
and others in this body have worked hard to ensure
that NIH has the overall funding it needs to
aggressively pursue research opportunities like
those relating to Parkinson's.  I have received a
letter dated May 21, 1998 from NIH Director, Dr.
Harold Varmus, which includes a chart indicating
that the NIH will spend over $106 million on
Parkinson's research in fiscal year 1999.  I look
forward to working with my colleagues and the NIH
to see that this funding goes for research
principally focused on the cause, pathogenesis,
and/or potential therapies or treatments for
Parkinson's disease as mandated by the Udall Act.

Mr. SPECTER.  I thank the gentleman for his
remarks, and look forward to continuing to work
with him on these matters.  Now I would like to
recognize the other Senate sponsor of the Udall
Act, another Senator with a deep and sincere
connection to Parkinson's disease, the gentleman
from Minnesota, Senator Wellstone.

Mr. WELLSTONE.  I thank the Senator, and commend
him for his support on this very important issue.
I also wish to thank my friend, Senator McCain,
for joining me last year in sponsoring the Udall
Act.

I believed when we passed the Udall Act last year
we had begun to change a sad history of chronic
underfunding of Parkinson's by the NIH.  It was a
very personal victory for me--and for all those
who fought so hard to see the Udall Act enacted
into law.  I am here today, along with my
colleagues, in an effort to fulfill the promise of
the Udall Act and the commitment we in Congress
made to people with Parkinson's, their families
and those researchers dedicated to curing this
disease.  I find it very disheartening to learn
that so little of the research NIH claims to
devote to Parkinson's is actually
Parkinson's-focused as called for by the Utall
Act.  It was our intent and it is our obligation
to ensure that at least $100 million in research
specifically focused on Parkinson's is allocated.
And if it takes stronger language, more oversight,
or congressional hearings to guarantee it gets
done, then that's what we must do.

Members of the Senate have expressed their
interest in seeing the Udall Act fully funded in
fiscal year 1999, and we have taken some positive
steps this year to accomplish that goal. But our
work is not done.  The ultimate goal is not
legislative accomplishments. It is not adding more
dollars to this account or that one.  The ultimate
goal is to find a cure for this horrible,
debilitating disease so that more people don't
have to suffer the way my parents and our family
did, or the way Mo Udall and his family does, or
the way countless families do every day in this
country.  By passing the Udall Act we made a
promise to put the necessary resources into the
skilled hands of researchers dedicated to finding
that cure.  I intend, as I know my colleagues and
those in the Parkinson's community intend, to do
everything I can to fulfill that promise.

Mr. SPECTER.  I thank the Senator from Minnesota
and all of my colleagues for their remarks today
about Parkinson's research funding through the
NIH.  I look forward to working closely to address
the concerns expressed here today.




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