Monday, September 10, 2007

Summary of MS Activism in Support of MS Research Funding

Where We Are and Where We're Headed

Throughout the past year, MS activists and the National MS Society have been aggressively pursuing a new avenue of federal funding for multiple sclerosis research. We have focused on a $15 million appropriation through the Congressionally Directed Medical Research Programs (CDMRP) at the Department of Defense (DoD) in the FY 2008 Defense Appropriations bill. This would serve as a new source of funding for MS research, and complement existing efforts at the National Institutes of Health.

As this issue has danced through the legislative process this year, you have probably received many MS Action Alerts asking for you to encourage support from your Representative and Senators. You might have even sent a letter to the editor of your local newspaper. MS activists like you have worked hard to advance this issue on many levels. As promised, we want to keep you updated on the progress. The Federal Focus this month is dedicated to outlining where we are on this issue, how far we have come, and what you can do now.

First created in 1992, the Congressionally Directed Medical Research Programs (CDMRP) is housed in the Department of Defense. Congress first created the program, at the behest of grassroots advocacy organizations, to fund research on the screening and diagnosis of breast cancer among military woman. Since then, CDMRP's focus has expanded to incorporate research on nearly 20 diseases and conditions, such as ALS, post traumatic stress disorder, and tuberous sclerosis. CDMRP is a unique and nimble program that funds high-risk, high-reward research that complements the work conducted at the NIH. It only makes sense that CDMRP also explore multiple sclerosis research.

Why MS Research?
Preliminary evidence suggests that combat veterans could have an increased risk of developing MS. A recent study in the Annals of Neurology identified 5,345 cases of MS among U.S. veterans that were deemed "service-connected," and more than 25,000 veterans currently receiving treatment through the VHA have a diagnosis of MS. In addition, an epidemiological study found an unexpected, two-fold increase in MS between 1993 and 2000 among residents of Kuwait, which suggests an environmental trigger for MS.

"MS is a disease that is most likely triggered by one or several environmental insults ... Exposures unique to [Gulf War] theater may have increased GW veterans' risk
for developing MS."
- research hypothesis from Dr. Mitch Wallin,
neurologist who treats veterans with MS at the
Department of Veterans Affairs' MS Center of Excellence in Baltimore

The Society is basing the request for MS research funding in the CDMRP on this and other compelling evidence. Funding MS research at DoD should be a priority for serving those who served us. But the work could benefit all Americans who live with multiple sclerosis. Read more background on this issue.

MS Activists in Action
At the end of 2006, the National MS Society began a petition drive to help urge Congress to support funding for MS research through the CDMRP. It was our first step in pursuing this new avenue of research. The goal was to collect as many signatures as possible to demonstrate the overwhelming support for MS research across the country. With your help, the petition successfully garnered more than 100,000 signatures nationwide.

In March 2007, MS activists who attended the annual MS Public Policy Conference in Washington, DC, brought this issue to Capitol Hill. They met with Representatives and Senators, and asked them to show their support by signing a House and Senate version of a "Dear Colleague" letter, respectively. The letters were directed at each chamber's Appropriations Subcommittee on Defense. MS activists gave their legislators a CD of all 100,000 petition signatures to show the nationwide attention to this issue. The visits resulted in 20 Representatives and 21 Senators signing their respective letters.

Since then, the MS Action Network has been alive with calls for action. Each time the issue has changed course in Congress, it has needed your emails, telephone calls, and in-person visits with legislators. So far, MS activists have taken action more than 19,000 times on this issue alone.

Congressional Activity
The Defense appropriation for MS research funding has seen a lot of Congressional movement since its inception. Following is a summary of activity in the House of Representatives and in the Senate...

House Status
Congressman Russ Carnahan (MO) and Congressman Rick Renzi (AZ) spearheaded efforts in support of this issue in the House back in March by sponsoring a "Dear Colleague" letter. Twenty Representatives signed the bi-partisan letter that was then sent to Chairman John Murtha (PA) and Ranking Member C.W. Bill Young (FL) of the House Appropriations Subcommittee on Defense. This letter made the official request for a $15 million appropriation for MS research through CDMRP at DoD in the FY 2008 Defense Appropriations bill. The Subcommittee and full Appropriations Committee reported out their Appropriations bill (H.R. 3222), and the House passed this bill on August 5.

"Supplementing current MS research with additional money from the Department of Defense would be a significant step toward providing hope for people with MS."
- Congressman Russ Carnahan (MO)

Unfortunately, H.R. 3222 did not include any funding for MS research. But the MS champions in Congress did not give up. Chairman Murtha finally agreed to work to incorporate at least $10 million in funding during the conference committee, where the House and Senate differences would be worked out. On August 29, Congressman Carnahan began circulating another "Dear Colleague" letter thanking Chairman Murtha for his commitment. Currently, the House is waiting for the Senate to act.

Senate Status
On the Senate side, Senator Barack Obama (IL) and Senator Norm Coleman (MN) spearheaded the MS funding request through their own "Dear Colleague" letter. Twenty-one Senators joined their colleagues in sending the appropriation request to Chairman Daniel Inouye (HI) and Ranking Member Ted Stevens (AK) of the Senate Appropriations Subcommittee on Defense. This Subcommittee currently is crafting their version of the FY 2008 Defense Appropriations bill. It is anticipated that the Subcommittee will vote on the bill in the second week in September with a full Senate vote scheduled for the end of September.

Once the Senate passes their bill, the House and Senate versions will be conferenced together. We will continue to keep you updated. We are hopeful that through your advocacy efforts and hard work, the Senate will choose to include an appropriation for MS research.

Now What?
You can do two things right now to help keep this issue moving forward in both the House and the Senate:

  • Send an email to your Representative asking them to: sign the "Dear Colleague" letter that Congressman Carnahan is circulating. Click here and enter your ZIP code to take action. The letter calls for support of funding for MS research during the DoD Appropriations conference between the House and the Senate. This letter, being sent to Congressman Murtha, chair of the House Appropriations Subcommittee on Defense, will help encourage him to keep his commitment to fight and include at least $10 million for MS research in the conference report.

  • Send an email to your Senators asking them to: encourage the Senate Appropriations Subcommittee on Defense to include the full $15 million for MS research in their version of the DoD Appropriations bill. Click here and enter your ZIP code to take action. This is a critical time to influence the Subcommittee's decisions because they are currently working on crafting the bill.

Thank you for being an MS activist. Join the movement at


Diana de Avila - "gkygrl" said...

Hi, I am one of those 5000+ veterans with service-connected MS (but I served in 1983). I appreciate your blog and wanted to share mine too:

I'll make sure to add yours and be a bit more active in my role as a retired soldier & MS'er.



Daniel Kirkdorffer said...

I contacted my congressman, Dave Reichert (R-WA), and he replied indicating he was a member of the MS Caucus. However he is not listed in your sidebar.

Can you please confirm he is a member of the MS Caucus and update your information?

MS Activist said...

Daniel - Thank you for your comment. We did not know that Congressman Reichert had accepted our invitation to join the MS Caucus.

After receiving your note, we contacted his office to confirm.

Thank you for letting us know. That's what MS activism is all about. We've added his name to the list.

Daniel Kirkdorffer said...

No problem.