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National Institutes of Health (NIH)

PAN Supports an Increase in NIH Budget

PAN continues to be active in supporting increases in funding for the National Institutes of Health (NIH). Along with the Ad Hoc Group for Medical Research, a coalition of over 100 patient advocacy groups, academic institutions, and scientific communities, PAN supports a $1.9 billion, or 6.6 percent, increase for NIH’s budget in Fiscal Year 2009. In order for NIH to implement the reforms recently passed by Congress, with the strong support of PAN, appropriations for NIH must, at a minimum, keep pace with biomedical inflation. Without appropriate funding, NIH does not have the resources to engage in the clinical and translational research needed to hasten better treatments and cures for Parkinson’s disease and many others.

In 2007, PAN weighed in with both the House and Senate in favor of the strongest increases possible for NIH. As you know, PAN strongly preferred the NIH funding level in the FY (FY) 2008 Labor, Health and Human Services, and Education Appropriations Conference bill, which provided a 3.1 percent increase over the past year’s funding, but was vetoed by the President in November of 2007. The FY 2008 Senate bill provided a 2.8 percent increase and the House-passed version of the bill provided NIH with an increase of 1.9 percent.

Unfortunately, the enacted Fiscal Year 2008 omnibus bill, which included funding for NIH as well as all non-defense spending bills, only provided $28.94 billion in program funding for NIH -- which equates to 0.46% increase or $133 million over the previous year. This de facto funding cut harms the Parkinson’s community’s on-going efforts to enhance patient-oriented outcomes at NIH, as well as NIH Reform implementation efforts that would benefit the patient community.

We are sincerely disappointed at this lack of funding for NIH. This is the fifth consecutive year that federal funding for biomedical research will not keep pace with inflation, which jeopardizes available funding for Parkinson’s-specific, translational, and clinical research at NIH.

PAN thanks its advocates for weighing in with their Members of Congress about critical NIH funding in 2007. Unfortunately, this issue has become an uphill battle. We must re-double our efforts in 2008 and insist on a return to reasonable funding for biomedical research.

Please read additional PAN supported coalition letters regarding NIH funding:

Letter to Senate Chairman Byrd and House Chairman Obey urging that at least $14 billion be allocated to the Labor-HHS-Education Subcommittees on Appropriations.

Letter to the Senate in support of the proposed 4.8% funding increase for select federal agencies including the National Institutes of Health.

Please read the PAN coalition letter, signed by 850 organizations, that was sent to the entire Senate urging passage of the FY08 Labor-HHS-Education Appropriations Bill that increases overall funding above the FY 2007 levels for critical programs.

Please read the PAN coalition letters to the Senate and House in support of the Senate provided increase in funding for the NIH.

Udall Centers Evaluation
Exactly ten years ago, PAN advocates successfully worked to enact legislation that created the Morris K. Udall Centers of Excellence for Parkinson's Disease Research (Udall Centers). On November 13, 1997, the President signed the Morris K. Udall Parkinson’s Disease Research Act of 1997 into law (P.L. 105-78), which created the Udall Centers among other initiatives. Although not every aspect of the legislation was ultimately implemented, the creation of the Udall Centers was an essential component of both the Morris K. Udall Parkinson's Disease Research Act of 1997 as well as overall PAN’s advocacy efforts.

In late 2005, NINDS commissioned the formal evaluation to objectively review the Udall Centers Program. The evaluation of the Centers was sparked by Jeff Martin, as both Chair of the PAN Board of Directors and a member of the National Advisory Neurological Disorders and Stroke Council, when he encouraged NINDS to assess the progress of the Udall Centers Program. PAN continued to be involved in the Udall Centers evaluation as Amy Comstock Rick participated on the Center Program Evaluation Working Group.

The evaluation has been completed and the Working Group found that the Udall Centers Program significantly impacted the Parkinson’s disease research field and recommended that NINDS should continue to support the program. The formal evaluation process also included a Data Report developed by Booz Allen Hamilton, which was utilized by the Working Group to aid in the development of Udall Center program recommendations.

Please download the final Data Report to read background information on the project, study questions and design, and data and analyses on the Udall Centers and a comparison group of Parkinson’s disease researchers. Staff from Booz Allen Hamilton, contracted by the NINDS, developed the study methodology and conducted the data collection and analysis.
Download the Data Report (pdf, 3 MB)

Please download the final Recommendations Report to read the findings and recommendations made by the Working Group.
Download the Recommendations Report (pdf, 353 KB)

Udall Centers
In 1998 and 1999, NINDS funded the first 11 Udall Centers. Ten of the original Udall Centers are still in existence today along with an additional four Centers, including the Parkinson’s disease – Data Organizing Center (PD-DOC).

Brigham and Women’s Hospital	original center
Columbia University of the Health Sciences	original center
Duke University	original center
Emory University	former center
Harvard University Medical School and McLean Hospital	original center
Johns Hopkins University	original center
Massachusetts General Hospital with Massachusetts Institute of Technology	original center
Mayo Clinic at Jacksonville	original center
Northwestern University	new center
University of California, Los Angeles	original center
University of Kentucky	original center
University of Miami	new center
University of Pennsylvania	new center
University of Pittsburgh	new center
University of Virginia (UVA)	original center
University of Rochester - Parkinson's Disease - Data Organizing Center	new center

NIH Small Business Innovative Research Program

PAN’s CEO, Amy Comstock Rick, testified before the House Small Business Committee on February 13, 2008 regarding the NIH Small Business Innovative Research program. This program provides grants to small businesses to conduct research in the early stages of biomedical product development. This important translational and clinical research program must be reauthorized by September 30, 2008. To read the testimony click here.