Increase Funding for MS Research: An Interview with Sarah Keitt

Sending a clear message to Congress, MS activists will request “robust funding for MS research” and at least $32B funding for the National Institutes of Health (NIH). You may be familiar with NIH, but do you know about the Congressionally Directed Medical Research Program (CDMRP) funded by the Department of Defense (DoD)?
Diagnosed with MS in 2000, Sarah Keitt volunteers with the National MS Society and serves as a consumer reviewer for the Multiple Sclerosis ResearchProgram (MSRP) which is part of the CDMRP. I spoke with Sarah about her role as a peer reviewer for the MSRP, a program that has received $20 million since 2008 to fund grants for cutting edge, “high risk” research.
How did you become a peer reviewer for the CDMRP?
“I have been involved with the MS society since 2000 when I was first diagnosed. I’ve volunteered in one way or another. I have a background in public health and worked on clinical research issues [in my career], so I have a strong familiarity with study design, clinical research, and bioethics. Then an opportunity came up that fit my professional interests along with my personal interest in MS.” 
Sarah was first appointed to the CDMRP in 2008 as a peer reviewer for the Clinical Research Program. In 2009, Sarah was invited to join the Stakeholders’ Committee and serve as a consumer reviewer on the Integration Panel for the newly established Multiple Sclerosis Research Program (MSRP). She “jumped at the chance.”
Please explain the research proposal and peer review process?
“At the beginning of the funding cycle – once Congress says, ‘here’s the money you are going to get this year’ – members of the Integration Panel sit down and have what we call a Vision Setting meeting. We decide: What are the research gaps? What types of studies do we want to fund?
From there, the Department of Defense (DoD) develops a Call for Proposals which goes out to researchers around the world [who in turn] submit study proposals back to the DoD. Depending upon the funding mechanisms – as there are different types of grants – those pre-proposals might come back to the Integration Panel for a pre-screening. We might get a couple of pages describing what they WANT to do.
We pick the best of the best to submit a full proposal. Those investigators develop a whole proposal, which is 20-30 pages long, and which gets sent to Peer Review, another panel consisting of MS researchers and consumer advocates. They read through the whole proposal and judge it based on study design, feasibility, what kind of impact it’s going to have on MS and innovation. Then the highest-scoring ones come back to the Integration Panel. 
We take all the proposals and see how they fit into a balanced research portfolio and how they fulfill the vision we set up at the beginning of the process. We narrow it down and select the finalists. When we do that, it goes back to the Department of Defense for final approval and negotiations on the contracts. Then the grants are awarded.”
Are consumers involved throughout the process and how long does that take?
“Consumers are there from the very beginning when we decide what kind of studies we want to fund. They’re there to review the studies when they come in to see which are the best. And we’re there to make the final recommendations as to what should be funded. It takes about a year.”
CDMRP ensures research they fund does not duplicate that being funded by NIH or the National MS Society. “We fund stuff nobody else really will fund because it is considered ‘high risk’ and there is often not a lot of preliminary data,” says Sarah. “So we might take the kernel of an idea that somebody has and fund it so they can get the preliminary data and they can do the feasibility studies, to then go on to a larger scale study” perhaps receiving NIH grants.
Results from the first round of research funding from 2008 are just beginning to come in. Complete studies will be published in peer review journals and MSRP will maintain a research clearing house. View the MSRP Program Booklet to see Grant recipients from 2009.
Sarah, do you have any final thoughts?
“If you don’t get involved with advocacy, no one else is going to do it for you. It’s up to us, as people with MS, to make sure that the funding for research is there, that services for people with MS and other disabilities are there. It’s really critical that we get involved in any way that we can!”
Policy Update:
MS Activists on the Frontline are asking lawmakers for $32B funding for the National Institutes of Health (NIH) and $10 million for MS research as part of the CDMRP. NIH has invested more money in MS research than any other agency in the United States, including many large-scale MS projects and clinical trials. Approximately $122 million of FY2011 NIH-appropriated funding was directed to MS-related research.
The National MS Society has spent $761 million in research since 1947, contributing to many of the FDA approved therapies. In 2011 alone, the Society invested $40 million in 325 new or ongoing research projects. However, “we need the National Institutes of Health (NIH) and the Congressionally Directed Medical Research Program (CDMRP) to help fill the gaps,” says Dr. Timothy Coetzee, Society Chief Research Officer.
Coetzee emphasizes that NIH spending is flat and CDMRP spending is down. “The uncertainty of funding streams is causing experienced researchers to leave the field and is making it harder to attract and retain the most promising researchers and doctors to MS.” But we still have so much more work to do, especially in the fields of progressive MS, myelin repair, symptom management and rehabilitation to improve quality of life, and the cause and prevention of multiple sclerosis.
Follow the National MS Society federal policy efforts on Twitter at @MSActivists
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