The Voice from Washington

PD Capital Campaigns in 2002

As 2002 and the final “lame-duck” session of an old Congress draw to a close, we thought it would be useful to summarize some of the highpoints of Parkinson’s activity in Washington over the past several months.

Parkinson’s Disease Research Funding
The summer of 2002 began on a high note when on May 22, advocates from across the country packed the hearing room of the Senate Appropriations Subcommittee on Labor, Health and Human Services and Education to listen intently as Michael J. Fox, Muhammad and Lonnie Ali, Joan Sam-uelson, and others testified about the effects of Parkinson’s disease and the need for greater federal funding for research. The hearing garnered national media attention and underscored the urgency for increased federal funding.

During the hearing, many witnesses expressed concern that the National Institutes of Health (NIH) was not fully implementing the Parkinson’s Disease Research Agenda, which NIH developed in 2000 at the request of Congress. The five-year Agenda called for $1 billion in spending to advance Parkinson’s research and eventually cure the disease.

The Subcommittee seems to have shared these concerns. As a result, very strong language appeared in the Senate report that accompanied the Labor, Health and Human Services and Education Appropriations bill. The language, in part, reads, “Parkinson’s disease: The Committee is aware that the Parkinson’s Disease Research Agenda developed by the NIH in 2000 included professional judgment funding projections that totaled an additional $1,000,000,000 over 5 years. It is the clear intent of the Committee that the NIH, which has received substantial funding increases in recent years, come as close as possible to fulfilling that Agenda while maintaining the standards of peer review. The Committee strongly urges the NIH to devote additional resources to Parkinson’s research using all available mechanisms, including requests for applications (RFAs), and further support of National Institute for Environmental Health Sciences (NIEHS) initiatives. The Committee expects the NIH to report to Congress by April 1, 2003, on the steps it is taking to fulfill the Parkinson’s Disease Research Agenda.”

The House of Representatives has yet to act on a Labor-Health and Human Services Appropriations bill, but is expected to include similar language in its version. In fact, Parkinson’s received unprecedented support in September when a record 107 Members of Congress signed a “Dear Colleague” letter supporting the Parkinson’s Disease Research Agenda.

Another program of great importance to the Parkinson’s community is the Department of Defense Neurotoxin Exposure Treatment Research Program (NETRP). The NETRP was funded at $25 million in this year’s House Defense Appropriations bill—$8 million more than last year. This unique program provides funding to scientists working on research to determine both the cause and treatment of Parkinson’s. Again, this bill has not received final approval, but with the perseverance of the community, Parkinson’s funding is expected to fare well.

Another exciting development occurred this summer when NIEHS announced a $20 million grant to be distributed among three top research facilities for work to unravel the environmental links to Parkinson’s (Read story). More encouraging research news is sure to come from this initiative over the next year.

New Director at the NIH
More good news for the Parkinson’s community came with the appointment of Dr. Elias Zerhouni to the long-vacant position of NIH Director. Shortly after his appointment in May, representatives from the Parkinson’s community were among the first groups to meet with the new Director. During the meeting, Dr. Zerhouni committed to forming a “Parkinson’s initiative” which will focus on streamlining the research process. This level of commitment to Parkinson’s and the speed with which he is carrying out his promise are very encouraging. In early August, Dr. Zerhouni convened a meeting with top Parkinson’s researchers from across the world and key members of the Parkinson’s community to understand the current state of Parkinson’s research and how best to fund new research.

Stem Cell Research
Stem cell research is once again making headlines. There have been numerous media reports recently about the fact that researchers do not have access to enough cell lines. Researchers report that the President’s stem cell policy is inadequate to allow this promising research to move forward. In addition, former First Lady Nancy Reagan has quietly made known her support of stem cell research and her frustration with the Bush Administration’s policy on this.

On September 25, Senator Arlen Specter (R-PA) chaired a hearing of the Senate Appropriations Subcommittee on Labor, Health and Human Services and Education at which senators received a progress report from researchers and the NIH on the implementation of the President’s stem cell policy. Several of the stem cell researchers told their personal stories about the lack of access to stem cell lines. One scientist summed up the sentiment of all of the researchers when he said, “embryonic stem cell research is crawling like a caterpillar.”

Overall, this has been an exciting few months filled with promise for the Parkinson’s community. Many significant events have occurred to increase Parkinson’s awareness in Washington and across the country. However, our mission is far from over. Whenever your representatives and senators are at home, make a point to visit with them at their local offices or at other events they are attending in your area. Schedule an appointment, and bring your friends and family with you to tell your personal story about Parkinson’s. The more people who make their voices heard, the more effective we can be in Washington and the closer we will be to a cure. And if you would like to receive regular Washington Updates and Action Alerts from the Parkinson’s Action Network (PAN) — or if you simply want to become more involved in advocacy—call us at 800-850-4726 or email us at info@parkinsonsaction.org.

From Parkinson’s Action Network, the Washington-based advocacy arm of the Parkinson's community.