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Advocating for the PD Community
By Robin Elliott
Since its founding in 1957, the Parkinson’s Disease Foundation (PDF) has been active in the areas of research, education and public advocacy for two overall purposes: to find the cause(s) of and a cure for Parkinson’s, and to provide support and services to people who live with the disease. To mark our 50th anniversary, we have devoted articles in the last two issues of News & Review to detailing our programs of research and education. Here we communicate our work in advocacy, the third component of our strategy.
For more than a decade, PDF has assumed the role of advocate on behalf of, and in collaboration with, people with Parkinson’s, their families and caregivers. Our advocacy efforts take on a variety of forms — such as creating a formal place at the table for people with Parkinson’s within PDF, supporting advocates in their efforts to influence change, facilitating conversations with researchers on clinical trial outcomes and placing the interests of the Parkinson’s community front and center with our government leaders.
People with Parkinson’s Advisory Council
In spring 2006, PDF launched the People with Parkinson’s Advisory Council (PPAC) to provide the perspective of the patient to our processes of program development and priority setting.
Of the 14 founding members of PPAC, 11 are people with Parkinson’s and three are caregivers, from many areas of the country. The professional backgrounds of these accomplished individuals include social research, medicine, law, technology and writing.
PPAC members provide PDF with perspectives on research-funding priorities and ways that we can better serve people living with Parkinson’s through our education and advocacy programs. PPAC members will also represent PDF within their local communities and attend relevant meetings.
The People with Parkinson’s Clinical Research Advocacy Initiative
In 2006, PDF created an initiative that provides technical consulting and financial support to clinical research advocacy projects that are led by people with Parkinson’s. In the inaugural year of this initiative, PDF selected the Parkinson Pipeline Project as its focus. This group of people with Parkinson’s disease is committed to addressing barriers to the acceleration of clinical research. In January 2007, PDF worked with Pipeline to create a roundtable on the rights and responsibilities of clinical trial participants.
The FDA Patient Consultant Program
PDF’s support of the Pipeline Project in earlier years was a major factor in the US Food and Drug Administration’s (FDA) creation of a model Patient Consultant Program for Parkinson’s Disease. The initiative represents an effort by the FDA to add patient perspectives to the regulatory process. The initial panel of three advisors includes Marshall Loeb, a PDF Board Member, and David Eger, a member of PPAC.
Securing federal funding for PD research
PDF recognizes that the Parkinson’s community is best served when represented by a single voice before policy makers — be it in Congress, federal agencies or the White House. For this reason, PDF was the first Parkinson’s organization to support the Parkinson’s Action Network (PAN), our unified advocacy voice on federal funding and public policy issues. PDF is one of PAN’s most reliable and generous supporters; in 2006 we contributed $150,000 towards the organization’s $2.1 million budget.
When PAN was created in the early 1990s, total NIH spending on Parkinson’s research was estimated at just $25 million, or about $25 per patient (compared with more than $300 per patient in the area of heart disease). By 2004, in significant part because of the work of dedicated advocates and organizations like PDF, NIH expenditures on PD had risen to $250 million, or about $250 per patient.
Another important focus for PAN has been identifying and expanding sources of support for Parkinson’s research in other agencies of the federal government, including the Department of Defense (DoD) and the Department of Veterans Affairs. One novel program is the Neurotoxin Exposure Treatment Research Program (NETRP), to which DoD allocates more than $25 million a year to support innovative Parkinson’s science.
Supporting research involving stem cells
Not all the federal issues in Parkinson’s have to do with money. One major issue for the Parkinson’s community has been challenging the Bush Administration’s partial ban in August 2001 on federal support of research involving embryonic stem cells.
To combat this policy, PDF and more than 80 other research advocacy organizations came together to create the Coalition for the Advancement of Medical Research (CAMR), an organization dedicated to lifting restrictions on federal funding for stem-cell research.
In 2002, PDF led the creation of New Yorkers for the Advancement of Medical Research (NYAMR), a coalition of New York State-based disease advocacy groups, university research centers and biotech industry leaders that have assembled to achieve legislation that would affirm and support scientific research involving embryonic stem cells and other DNA therapies.
These programs would not be possible without your support. We thank you, and ask you to join us in honoring our 50th year with the hope that we will not see another anniversary before Parkinson’s disease is cured.
Robin Elliott is Executive Director of the Parkinson's Disease Foundation.