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Government Relations: Introduction to Government Relations
The Need For Grassroots Advocacy
The best hope for curing PKD is through medical research. PKD research remains heavily underfunded, however, compared to other less prevalent diseases. For example, the National Institutes of Health (NIH) spends more than twice as much money on Lyme disease as it does for PKD, even though Lyme disease is 45 times less prevalent than PKD and can readily be treated.
A second example is cystic fibrosis, another genetic disease that is estimated to receive $131 million in research funding in Fiscal Year (FY) 2006 from the NIH while PKD is expected to receive just $35 million in funding. PKD affects 20 times more Americans (600,000) than cystic fibrosis (30,000).
When the PKD Foundation was established in 1982, the NIH wasn’t allocating any money for PKD research. When we began to aggressively advocate for PKD research funding in the 1990s, the NIH funded a little more than $1 million. By 1997, that small number had increased to more than $7 million in funding. During 1998, the PKD Foundation successfully petitioned Congress to direct the NIH to establish four PKD research centers at $1 million each in its 1999 budget. More recently, the PKD Foundation was successful in getting PKD included as a candidate for research funding under the Department of Defense Peer-Reviewed Medical Research Program for FY 2006.
The PKD Foundation’s active advocacy efforts before Congress have resulted in significant increases in research funding from the NIH, as well as opened up new options for funding through the Department of Defense. The amount of scientific progress in PKD research has been remarkable. In just 12 years, scientists have gone from discovering the genes that cause PKD to launching seven clinical drug trials in humans.
More work needs to be done, however, to ensure a cure for PKD.
What can you do to help with our mission?
Efforts by the PKD Foundation are on-going and lead to positive results, but the very best advocates for our mission are our members and friends around the country just like you. The PKD Foundation has 60 chapters and thousands of members in communities across the country.
Sharing your personal stories of PKD and your support for PKD research with our elected officials in Washington, D.C., can make a significant difference in the PKD Foundation’s advocacy efforts. If you can raise PKD awareness among your Senators and Representatives and persuade them, in turn, to talk about PKD to their fellow Members of Congress, you’ve helped us go a long way toward ensuring continued funding for research, which brings us closer to a cure.
There are different ways you can directly influence how successful the PKD Foundation is in increasing PKD research funding and supporting other related issues in Washington:
- Sign up to receive Action Alerts, which will notify you when PKD related issues are before Congress and what you need to do to make your voice heard.
- Travel to Washington and participate in our annual conference, which is held every other year in Washington. The first day of the conference is spent visiting the Capitol Hill offices of your Senators and Representatives to share personal stories about PKD and to call on your elected officials to support PKD related issues.
- Participate in the public awareness events your local PKD Foundation chapter holds each year, including Walk for PKD, the only fundraiser in the world committed to PKD research.
- Contact your Senators and Representatives by calling them, writing a letter or sending them an electronic message. Read these helpful tips on the best way to reach them.
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