109th Congress

Parkinson's Disease

H.R. 3550/S. 2115

Background

Included in the fiscal year (FY) 1998 Departments of Labor, Health and Human Services, and Education, and Related Agencies appropriations bill (P.L. 105-78, signed on November 13, 1997) was the Morris K. Udall bill, a measure aimed at honoring Representative Morris K. Udall, who was elected to his seat in the 87th Congress (1961–1962) and served in each successive Congress until his resignation on May 4, 1991. He died on December 12, 1998, from complications due to Parkinson’s disease (PD). The Udall bill amended the Public Health Service Act to authorize $100 million to enhance Parkinson’s research programs at the National Institutes of Health (NIH). Specifically, it called for research and training, inter-Institute coordination, up to 10 Morris K. Udall Centers, a data system and information clearinghouse, Morris K. Udall Awards for Excellence in Parkinson’s Disease Research, and a National Parkinson’s Disease Education Program. Since then, numerous reports have been prepared for congressional committees, detailing action on each of the provisions contained in the bill as well as the development of a Parkinson’s Disease Research Agenda. Most recently, NIH submitted a report to the House and Senate Appropriations Committees in February 2006 that summarized the results of the PD summit held in June 2005, which included an analysis of the PD portfolio and recommendations for future research. Language in the FY 2007 House and Senate Appropriations Report encourages “NIH to develop a strategic plan for future investments in PD research, based on the findings of a planning conference tasked with identifying the current shortcomings and future opportunities for more effective treatments and potential cures for the disease, and with a clearly defined budget for achieving those objectives.”

Provisions of the Legislation/Impact on NIH

The Morris K. Udall Parkinson’s Disease Research Act Amendments of 2005 would amend the Public Health Service Act to revise provisions regarding a research planning conference required to be convened by NIH. The legislation would require such a conference to 1) investigate Parkinson’s research funded by NIH and 2) identify shortcomings and opportunities for more effective treatments and a cure for PD.

The identical bills would also require that:

• The results of each conference be included in a research investment plan that would also 1) provide for measurable results, with the goals of better treatments and a cure for PD determining the allocation of research dollars, 2) include an outline of how to fully utilize the Udall Center program, and 3) include a budget and implementation strategy
• The Secretary of Health and Human Services ensure adequate funding to carry out activities described in the investment plan
• NIH ensure funding for an additional Morris K. Udall research center to coordinate activities conducted by, and manage the interdisciplinary efforts of, the other centers; that each research center ensure that there is a significant clinical component and ongoing basic research; that there is an application review process for grants to fund such research centers; and that awards are made to support qualified investigators with potential for significant future PD breakthroughs
• NIH investigate and report to Congress on the incidence of PD

Status and Outlook

H.R. 3550 was introduced by Representative Lane Evans (D-IL) on July 28, 2005, and was referred to the House Energy and Commerce Subcommittee on Health. The companion measure, S. 2115, was introduced by Senator Debbie A. Stabenow (D-MI) on December 15, 2005, and was referred to the Senate Committee on Health, Education, Labor and Pensions. In March 2006, Representative Evans announced that he would not seek reelection at the end of this term, due to the difficulties of his struggle with PD. No further action has occurred on this legislation.