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Date: Mon, 26 Oct 1998 14:05:18 -0500
From: Kelly Abbett <[log in to unmask]>
To: [log in to unmask]
Cc: [log in to unmask]
Subject: Action Update from the Parkinson's Action Network
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Action Update
October 23, 1998
From the Parkinson's Action Network
e-mail: [log in to unmask]
**********************************************************************
Appropriations:
The 105th Congress adjourned on October 21 after voting to
approve the fiscal year 1999 omnibus appropriations package - a
massive spending bill encompassing eight separate appropriations bills
and other federal funding provisions. President Clinton signed the bill into
law the same day. Included in the omnibus package is the Labor, Health
and Human Services, and Education (Labor-HHS) Appropriations bill,
which funds medical research, including Parkinson's research, through
the National Institutes of Health (NIH). The final bill provides the NIH
budget with a significant $2 billion (14.7%) increase from 1998. This
increase will allow additional funds for many important areas of medical
research, including Parkinson's disease.
The conference report accompanying the Labor-HHS bill contains
additional Parkinson's research language intended to clarify and
strengthen the language already adopted in the Senate Labor-HHS
Appropriations bill. The new language, in the Office of the Director
section of the report, reads:
The conference agreement supports the fiscal year 1999 funding level
proposed in NIH budget documents for Parkinson's disease.
Consistent with the enactment of the Morris K. Udall Parkinson's
Research Act of 1997, NIH is expected to utilize resources for research
focused on Parkinson's disease such as where the principal focus of
the research is the cause, pathogenesis, and/or potential therapies or
treatment for Parkinson's disease.
A strong bipartisan group of 11 Senators sent a letter to
Labor-HHS Appropriations Subcommittee Chairman Arlen Specter (R-PA)
asking that clear language directing the NIH to carry out the intent of the
Udall Act be included in the Labor-HHS Appropriations bill [please contact
the Parkinson's Action Network for a copy of the letter]. Since the
timeframe for sending this letter to the Chairman was very tight, key
members of the full Appropriations Committee and the Labor-HHS
Appropriations Subcommittee were targeted rather than the entire
Senate. In addition to this group, Senators Paul Wellstone (D-MN) and
Frank Lautenberg (D-NJ) also sent similar letters to Chairman Specter.
With the support of so many of his colleagues, Senator Specter agreed
to the additional language.
In addition, Senators Specter, Wellstone, Thad Cochran (R-MS),
Larry Craig (R-ID), and John McCain (R-AZ) participated in a joint written
conversation - known as a "colloquy" - which was added to the
Congressional Record accompanying the final Labor-HHS conference
report. The colloquy is intended to state the Members' understanding of
Parkinson's research funding issues and their desire to fulfill the mandate
of the Udall Act in 1999. The colloquy expresses concern that the NIH
has been padding the Parkinson's research funding totals with research
not focused on Parkinson's disease, and suggests that Congressional
hearings may be needed to further examine these funding matters. The
colloquy represents another step forward in terms of visibility and
Congressional support for the Parkinson's community.
The conference report language is a significant and important
step in our fight to increase federal funding for Parkinson's-focused
research and is the result of an intense, coordinated effort by all facets
of the Parkinson's community. First and foremost, credit goes to the
grassroots activists for the sustained flow of calls, letters and contacts
with Members of Congress educating them about Parkinson's disease
and supporting full funding of the Udall Act. The scientific community
also made a major contribution to this achievement. Parkinson's
researchers from around the country reviewed hundreds of abstracts
detailing the 1997 NIH Parkinson's research program, and their analysis
provided further evidence of the NIH's failure to devote sufficient
resources to research truly focused on Parkinson's. This information
helped persuade Members of Congress that stronger language is
necessary to fulfill the promise of the Udall Act.
Our work is not yet done, however. We have to continue striving
towards the goal of eradicating Parkinson's disease. At this time it is
important to thank your Members of Congress, particularly the Senators
mentioned in this Update, and Representatives Fred Upton, Joseph
McDade (R-PA) and others, who were especially supportive during this
year's efforts. Inform them of our progress, thank them for their support,
remind them there is still more to do and that we will work together in the
future to continue the fight to conquer Parkinson's disease. By doing
these things, you will be fostering and improving your relationships with
Members of Congress in preparation for the important work that must
begin when Congress returns in January of 1999.
Thanks to each of you who worked so hard this year! You
should take pride in the accomplishments of 1998, and know that the
momentum of the Parkinson's community will continue to grow as we
enter 1999.
October 23, 1998
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