Apr 28, 2009
Moving Forward: Change happens through MS Activism
Liz Vinson
David and Kit Borden are two of the 300-plus people who were part of an orange wave of activists on Capitol Hill on March 11. Sporting MS orange neckties and silky orange scarves, participants in the Society’s annual MS Public Policy Conference disembarked at the new Capitol Visitors Center with minds focused on their mission-- bringing MS issues to the attention of their elected federal representatives. David and Kit were accompanied by Guia, Kit’s two-and-a-half year old lab/shepherd assistance animal. She wore orange too.
By the end of MS Day on the Hill, the activists collectively had visited 340 Congressional offices. They successfully recruited new sponsors for the House legislation to create national MS and Parkinson’s Disease Registries (HR 1362), and received indications that a matching Senate bill will be introduced this year. The MS Caucus gained new members on both sides of the aisle, thanks to strong support from Congressmen Russ Carnahan (Missouri) and Michael Burgess, MD (Texas) and Senators Byron Dorgan (North Dakota) and Orrin Hatch (Utah).
Keeping the MS message alive nationwide
The orange wave of March 11 will continue to have effects on federal legislators in the crucial coming months. Everyone in the MS movement, not just the MS activists who visited, can feel confident that federal lawmakers have heard the words “multiple sclerosis” and most have gotten a good look at just how much our community cares about what they do.
David Borden admitted to being a little bleary eyed the morning of March 11. He’d spent the night hunkered down in front of his computer to digest pages on health care reform posted on the Senate Finance Committee’s Web site by the chair, Senator Max Baucus of Montana. Like most MS activists, the Bordens have health care reform on their minds. Kit has been living with MS for years and David is a scooter repairman — an occupation that puts him in touch with many neighbors living with chronic disabilities in their part of western North Carolina.
Down to the nitty-gritty
The day before the Hill visits, everyone at the Conference honed their talking points after hearing a day’s worth of presentations on the big three:
1. Health care reform
The activists listened intently while John McDonough, health reform adviser to Senator Ted Kennedy, outlined the problems. Today, while housing and credit card debt take center stage as factors triggering the recession, McDonough informed the audience that health care cost is the number one reason for personal bankruptcy in the United States. This in a nation where 85% of the population has health insurance of some kind. Medical bankruptcy is almost unknown in other developed nations where chronic disease is handled more rationally.
Solutions are seen in reform of insurance regulations and reimbursement standards – so that medical risk is universally shared, prevention and rehabilitation are supported, and long term services and supports are provided to make the care of people with chronic diseases humane and cost effective.
Legislation is expected to be presented this spring. To be in the loop, sign up for email updates.
2. Federal funds for MS research
Last year, thanks to MS activists, $5 million was obtained for peer-reviewed MS research through a Department of Defense program called the Congressionally Directed Medical Research Programs or CDMRP.
This year, MS activists are asking for a $15 million CDMRP appropriation.
Emerging evidence suggests that combat veterans who served in the Middle East might be at increased risk of MS. This hypothesis was given impetus by a recent study showing a two-fold increase in MS in Kuwaiti civilians between 1993 and 2000, when the first Gulf War potentially exposed that nation to combat-related neurotoxins.
CDMRP funds, together with support for MS research from the Department of Defense’s Peer Reviewed Medical Research Program, complement existing funding from the National Institutes of Health. All sources help ensure that funding keeps pace with important MS research ideas. Add your support!
3. A national registry for MS
Health care policy advisor Dr. Nicholas LaRocca put it bluntly: We don’t really know how many people have MS in the United States.
The figure the Society uses (400,000) is widely acknowledged to need updating. It is based on extrapolations from studies done as far back as the 1970s. Other numbers are clearly wide of the mark: a Zogby Poll claimed 2,900,000 Americans have MS, while the NIH offered 266,000 as an estimate.
The Parkinson’s disease community suffers a similar lack of credible information. This is the data needed for rigorous research on causes, clusters, environmental triggers and impact and to guide program development. A collaboration between the two disease groups has created a new bill (HR 1362). Add your support by visiting our advocacy web page.
Keep the momentum going
The Bordens and their fellow activists are back home now, but work on these big issues is moving ahead. As MS Public Policy Conference guest speaker, the consummate Washington insider Charlie Cook said at lunch, “You gotta scramble for what you want!”
- Create change. Be an MS activist.
- Sign up now to receive news and updates by email.
- Weigh in. When your voice is particularly needed on behalf of something pending, we’ll send you a clickable form.
- Visit the Society home page every week.
- Join the action by posting comments on the MS Activist Blog.