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$1 Billion Earmarked for Parkinson's Research

On March 20, 2000, capping several months of breakneck conferencing and policy-making involving government officials, university-based scientists, drug industry representatives and Parkinson's advocates, the National Institutes of Health sent to Congress a five-year plan to spend almost $1 billion in new funds for research to combat and conquer Parkinson's disease.

Two weeks thereafter, on April 4, Congressional leaders staged a day of hearings at which the plan was presented by Dr. Gerald Fischbach, director of the National Institute for Neurological Diseases and Stroke (NINDS), to staff members of the Senate (in the morning) and of the House of Representatives (in the afternoon).

The plan was prepared by Dr. Fischbach and his staff in response to Congressional language accompanying the fiscal-year 2000 appropriations for the U.S. Department of Health and Human Services. The language in question noted the intent of the Morris K. Udall Parkinson's Research and Education Act of 1997 (which authorized significantly increased funding for Parkinson's research) and called on NINDS "to develop a report to the Congress by March 1, 2000 outlining a research agenda for Parkinson's-focused research for the next five years, along with professional judgment funding projections."

The document, unprecedented in its focus on a single neurological condition and distinguished by its boldness of tone and comprehensiveness of vision, includes a crucial section, known in NIH language as "professional judgment," in which scientist-advisors give an estimate of the funds that would be required to get the recommended program accomplished. Their estimate: some $950 million between now and 2006. By some calculations, this would mean quintupling annual spending on Parkinson's research.

Captured in the investigative spotlight will be all of the principal areas of basic and applied research, including genetic and environmental studies of the causes of Parkinson's; the processes of cell death that seem to be implicated in Parkinson's; and the development of new therapies, pharmacological and surgical.

One innovative section of the report calls for increased attention to the development of new tools and techniques for use in the research process itself, including finding new cellular, molecular and animal "models" of Parkinson's disease and developing new biomarkers and neuro-imaging techniques. Another, spotlighting our understanding of Parkinson's disease, addresses such topics as genetics (that is, the study of the extent to which Parkinson's is inherited); epidemiology (that is, identifying the risk factors for Parkinson's); the "life and death" of neurons involved in Parkinson's disease; and the neural circuits (sometimes called the "brain architecture") involved in Parkinson's disease. A third focuses on treatment strategies for Parkinson's, including new drugs, deep-brain stimulation, cell implantation, gene therapy and rehabilitation.

At the April 4 briefing session for Congressional staff and news media, Parkinson's advocates generally welcomed the report as an important step in confronting and ultimately defeating Parkinson's disease but cautioned that the success of any long-range plan depends upon the commitment of the primary players - in this case, Congress, the NIH and the scientific and advocacy communities - to maintaining consistency and focus over the years in pursuit of the plan's objectives.

In remarks following the meeting, Robin Anthony Elliott, executive director of the Parkinson's Disease Foundation, singled out Dr. Fischbach for special recognition, noting especially the "quiet authority, commitment to inclusiveness and unswerving attention to the bottom line - that is, what each research initiative can accomplish, now" that the Director brought to this complex process. He also applauded the "creative and tenacious leadership" of Joan Samuelson, president of the Parkinson's Action Network, in mobilizing the Parkinson's community in support of the plan and the crucial last-minute contributions to the appropriations process by Michael J. Fox, the talented actor who has become the leading celebrity spokesman for the fight against Parkinson's disease.

Source Date: May 20 2000