The Voice from Washington

by John Rogers

Today, I am writing to you about what counts in Washington … the people. Before I do that however, I want to talk with you about why Washington is important to all of us in the Parkinson’s community. For me, the answer is simple: there is no potential greater source of funding for Parkinson’s disease research than the federal government. Therefore, it is imperative we do all that we can to make sure that the federal government spends the money it has allocated for PD as aggressively as possible. What many of you who have been involved in advocacy know is that the majority of funds for medical research come from the National Institutes of Health (NIH). Thus, it is largely on the NIH budget that we concentrate our efforts.

This is not to say that private resources are unimportant, quite the contrary. Research funds provided by the Parkinson’s Disease Foundation are invaluable and are frequently the catalyst for cutting edge science. Many of the same researchers who receive PDF funding also receive funds from NIH, allowing PDF to leverage funds from the government to expand its research efforts.

While there are many reasons for advocacy, such as increasing awareness, promoting policies that allow research to move forward, and fighting policies that would deter future research, I would argue that advocacy for funding is at the top of the list. None of this happens by accident. I believe that the groups who speak the loudest and most frequently, receive the most attention in Washington. As the saying goes, “The squeaky wheel gets the grease,” and my goal is for our community to be very, very squeaky.

When one looks at successful advocacy campaigns in the patients’ rights communities such as PD, they all have one key ingredient in common — THE PEOPLE, YOU, YOUR FAMILY, AND YOUR FRIENDS. You are the reason that we have and can make a difference, and we need your help!

For those of you who have reached out to your elected officials, a heartfelt thank you. Your letters, phone calls, and meetings with Members of Congress, yielded tremendous dividends last year when Congress passed and the President signed a FY2002 Labor-HHS Appropriations bill containing unprecedented language urging the NIH to fully fund the Parkinson’s Disease Research Agenda. This language, coupled with the increase in funding for NIH and the Department of Defense “Neurotoxin Exposure Treatment Research Program,” represents a great victory for the Parkinson’s community.

2002 poses its own set of challenges and opportunities. One of our greatest challenges will be to keep the pressure on NIH to fund the PD Research Agenda aggressively.

The Parkinson’s Action Network, along with PDF, the Michael J. Fox Foundation and the Parkinson’s Alliance, to name but a few, have been working closely with NIH to figure out how the agency should spend its funding. In January of this year, NIH held a consortium meeting in Washington that Robin Elliott, Executive Director of PDF; PAN officials, such as Jeff Martin, Elisabeth Bresee-Brittin and myself; and other leaders from the PD community attended along with leading scientists from across the country to refine the PD Agenda.

While we are poised to build on our momentum from last year, Congress and the President are facing a shrinking budget. In light of last year’s terrorist attacks, funds that are not directly related to fighting terrorism will be even more limited than in years past. For example, the President has requested over one billion dollars of the NIH budget for FY2003 be applied toward bio-terrorism research and infrastructure.

Given these changes in Washington, the importance of grass-roots efforts have risen and Congress needs to hear from you. They need to know that while we as Americans all share in our desire to make America safer and stronger, the fact is that we in the Parkinson’s community realize that we are on the precipice of real breakthroughs if sufficient resources are applied. For us, we cannot let up. The Parkinson’s Disease Foundation in its support of the Parkinson’s Action Network is a key part of this effort. We have tried to make advocacy for the grass-roots easier than ever before.

For instance, on PAN’s website (www.parkinsonsaction.org) we have changed the format to instantly tell you who your national elected officials are and how they voted, when you enter your zip code. The site will also provide sample letters to your Members of Congress, talking points if you want to call your Congressional offices, sample “Letters to the Editor” to help educate the public on PD, and legislative alerts so you can stay tuned into what is occurring in Washington.

PAN’s Eighth Annual Public Policy Forum which was held in Washington, DC, took place May 19–21, 2002 at the Holiday Inn on Capitol Hill (see www.parkinsonsaction.org for more details). The Forum focused heavily on advocacy training to help you recruit, organize, and train new advocates in your home community. We held interactive sessions with officials from NIH and other agencies, workshops about the legislative process and building a local grass-roots advocacy network, as well as role-playing exercises and other training on how to interact with Congressional officials to make the best case for the Parkinson’s Agenda. In addition, leading members of the Parkinson’s research community participated in a scientific briefing on the state of Parkinson’s research and the latest breakthroughs. Attendees also had the opportunity to meet with their members of Congress.

As a part of PDF we cannot overemphasize the importance of your role in advocacy. Former Speaker of the House, Tip O’Neil said, “All politics is local.” The backbone of our grass-roots campaign is for your elected officials to hear from you, to talk to you, to meet you, to see you. These are the efforts that will help to ensure that the great strides made in working toward a cure for this devastating disease are funded as aggressively as possible.

John Rogers is the Education and Advocacy Director of the Parkinson’s Action Network, the Washington, DC-based Advocacy Arm of the Parkinson’s Community.