February 20, 1999 12:13 AM
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The Parkinson's Action Network The Parkinson's Action Network (PAN) was founded in 1991 with a mission to provide a voice for the Parkinson's community in the Congressional effort to lift the ban on federal support for fetal tissue transplant research. With the successful completion of this campaign in 1993, the mission expanded. Since that time, PAN's central objective continues to be to promote a level of research support sufficient to produce an effective treatment or cure before the end of the decade. Until this is accomplished, PAN's secondary mission is to provide an informed and organized public voice for Parkinson's-afflicted Americans. Accomplishing this mission has required: Developing an informed and effective grassroots network, involving individuals throughout the afflicted community, Parkinson's foundations, support organizations and scientists. Increasing public awareness of Parkinson's disease through the media. This includes focusing on the impact of Parkinson's on individuals, on health costs, and on the country as a whole; the potential for a scientific breakthrough; the need for greater support for research and the effect of government actions on the Parkinson's community. Working to strengthen the Parkinson's research program funded by the National Institutes of Health (NIH), through monitoring of the program and developing relationships with key officials and staff of NIH and the several Parkinson's related institutes. Working with Congress, the Clinton Administration and federal agencies to increase their awareness of the needs of the Parkinson's community and the impact of their decision-making on that community. Laying the Foundation The Network's efforts have included the following: Data development: Through extensive efforts by PAN volunteers, the Network has developed data on the impact of Parkinson's and the nature and extent of Parkinson's research performed. In addition, PAN has developed informative comparisons of the degree of funding provided for Parkinson's research, as compared to that of other disorders. Scientific advisor development: Through a series of "advisories" and follow-up correspondence and calls with over 50 Parkinson's specialists nationwide, PAN has solicited input from scientists, government officials and NIH as to the greatest needs for funding of scientific research. Parkinson's community coordination and development: A strong national presence on public policy issues affecting the Parkinson's community requires coordination of the community's efforts. PAN has worked to develop a communications network including Parkinson's-affected individuals, local and regional support groups, and national foundations such as the Parkinson's Disease Foundation, the Parkinson's Institute, the United Parkinson's Foundation, the National Parkinson Foundation and the American Parkinson's Disease Association. Advocacy efforts: On several fronts, the Network has worked to identify. educate and influence the key participants in governmental decision-making on issues affecting the community. Focus on Parkinson's research in federal appropriations: Working with the appropriations committees in the House and Senate, PAN has encouraged Congressional support for increases in research funding and efforts to improve and strengthen the existing research programs. This work began when PAN drafted language included in the 1994 NIH Appropriations and continued through Congressional-NIH contact in hearings, additional directives in the 1995 Appropriations and questions in 1996 hearings to date. Despite a very difficult climate for increased funding, the impact of this emphasis is beginning to be seen at the NIH. Increased funding of biomedical research in general: Since Parkinson's research is tied to the strength of the overall biomedical research program, PAN has worked in coalition with other neurological groups, such as End Neurological Disorders ("END") and the Alzheimer's Association, on initiatives to increase overall biomedical research support. Development of Parkinson's research legislation: The successes of other disease groups to strengthen their research programs have been tied to targeted legislation authorizing expanded research. In 1993, PAN launched a campaign to 'lump-start" federally-funded Parkinson's research through Congressional legislation. This required an extensive effort to collect input from Parkinson's researchers throughout the country and develop the support of the many Parkinson's foundations and individuals, It also involved extensive work with the family of former Congressman Mo Udall and the staffs of Senator Mark Hatfield and Congressman Henry Waxman to develop the actual legislation. The Morris K. Udall Parkinson's Research and Education Act, originally introduced on July 19, 1994 and reintroduced on April 6, 1995, is named after the former Arizona Congressman who was forced to retire in 1991 due to advanced Parkinson's. This bill will authorize an expanded research program funded at $100 million, and creation of several programs designed to promote expanded and aggressive Parkinson's research programs. They include: a "center" system to fund key research/clinical facilities nationwide; "excellence" awards to support demonstrated scientific leadership in Parkinson's research; strengthening of the investigator-initiated grant system; a brain bank and patient registry. · Improvement or NIH Programs: PAN has developed contacts with the National Institutes of Health and its parent Department of Health and Human Services to encourage expansion and strengthening of the Parkinson's research program. PAN is working with several institutes involved in Parkinson's related research, including the National Institute for Neurological Disorders and Stroke (NINDS), the National Institute for Environmental Health Sciences (NEHS), and the National Institute on Aging (NIA). Other Issues: While PAN's primary focus has been to strengthen Parkinson's research programs, the Network has been involved in other areas: Medicare approval of breakthrough therapies: In 1995 the federal agency running the federal Medicare system announced a tentative recommendation to deny coverage of pallidotomy on the basis of its "experimental" status. The Network responded by alerting the Parkinson's community and scientists, and by providing a conduit of information about the decision-making process. At this time, it appears Medicare will continue to provide coverage, but further monitoring is needed. * Disability benefits and insurance issues: In response to requests for help with denials of applications for Social Security disability and other disability benefits and insurance, PAN established a clearinghouse, working with individuals and groups such as the Central Ohio Parkinson's Society and the Parkinson's Disease Foundation. With this information, PAN volunteer Barry Latham-Ponneck drafted a guide specific to Parkinson's-related claims. (He discovered, for example, that documented evidence of specific loss of function is needed.) After receiving the information, some previously unsuccessful applicants reported success. * Other disability-related issues: The Network also has responded to calls on other disability issues, They include: problems with employer reluctance to accommodate a Parkinson's-related disability; help in concluding employment through a negotiated disability-related retirement; and assistance in obtaining other Parkinson's-related benefits. As the task force grows and is able to take on such issues, greater assistance in such areas is contemplated. * Fetal tissue research: PAN continues to provide information to neurologists and community advocates (e.g. in Arizona), who are battling state prohibitions on fetal tissue transplant research, as well as educate the general public on the subject. PAN also monitors the research to ensure compliance with the Research Freedom Act enacted in 1993 to lift the ban on federal support for research using tissue from elective abortions and protecting against possible interference with abortion decisions and procedures. * Approval of drugs and therapeutic products: The Network has met with researchers, pharmaceutical and biotech companies on the difficulties of obtaining FDA approval for new Parkinson's drugs. PAN also monitors pending FDA legislation and has begun to make contact with the FDA to ensure the best working relationship as biotechnical or pharmaceutical breakthroughs approach the state of clinical trials or approvals. Environmental concerns: Following findings of a link between manganese and Parkinson's, the Network joined 40 health and environmental organizations in opposing the Ethyl Corporation's use of a manganese-based fuel additive, MMT. The EPA has criticized the corporation's refusal to thoroughly test MMT. * Health care reform: PAN monitors health care reform developments and reviews the major issues affecting the Parkinson's community through the PAN newsletter Other issues: As Parkinson's advocacy increases, PAN and other organizations should tackle the great need for respite care and related patient services. The Network also monitors other issues affecting the community, including drug pricing and restrictions in the use of animals in research. |
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