Migraine Research Funding - An Important Step
One of the most difficult issues for those of us with problem Migraines and headaches is the lack of effective treatments. Although there are over 100 medications and supplements in use for Migraine and headache prevention, not one of them was actually developed for that purpose. All were originally developed to treat other conditions. Four of these medications were eventually tested and approved by the FDA for Migraine prevention; the others are prescribed off-label.
Perhaps the biggest obstacle in developing new treatments is the lack of research funding, particularly funding from the National Institutes of Health (NIH). Migraine alone impacts 12% of our population, yet less than one-tenth of one percent of the NIH budget currently goes to Migraine and headache research. Over the last few years, I've asked you to write to your Senators and members of the House when the Alliance for Headache Disorders Advocacy has been active in asking Congress to help us get more NIH research funding.
Today, instead of asking you to send another email, I have good news to report. Last week, a group of researchers, representatives of the National Headache Foundation and Migraine Research Foundation, and I were invited to an NIH headache* research planning meeting. The meeting was co-chaired by Stephen Silberstein, MD, Director, Jefferson Headache Center, Thomas Jefferson University, and Linda Porter, PhD, Program Director, National Institute of Neurological Disorders and Stroke. Story Landis, PhD, Director of the NINDS (National Institute of Neurological Disorders and Stroke) was in attendance to make opening remarks.
The NIH is working to develop and coordinate a long-term strategy to support and promote Migraine and headache research. This effort will require the efforts of the NIH Institutes with interests in headache research, private and public organizations, health care providers, headache researchers, and patient advocates. An initial meeting was held in April, 2009. Recommendations from that meeting helped to establish an agenda, format, and participant list for the last week's meeting to engage a much broader representation of key players in the field of headache research, experts in relevant fields who can help to broaden the scope of headache research, educators, patient advocates, health care providers, and representatives from the pharmaceutical industry and government agencies.
On Sunday, May 15, we began the meeting at 3 p.m. Dr. Landis and Dr. Silberstein offered opening remarks followed by three speakers:
- Peter Goadsby, M.D., Ph.D., Director of the Headache Center, University of California at San Francisco spoke on "Current Opportunities and Needs in Headache Research."
- Marcelo E. Bigal, M.D., Ph.D , Head of the Merck Investigator Studies Program and Scientific Education Group, Merck Research Laboratories talked about "Optimizing Resources Through Leverage and Partnerships."
- William Maixner, D.D.S., Ph.D., Director, Center for Neurosensory Disorders, University of North Carolina at Chapel Hill, presented on "Academic Centers: A Model for Development and Implementation."
Those presentations prepared us for breaking down into working groups on Monday to develop a plan of action to addresses the needs and opportunities of our topic area, identify partnerships to best implement the groups’ recommendations, and draft a set of outcome measures to serve as benchmarks for the future successes in headache research. Those working groups were:
- Animal Models and Research Resources
- Academic Headache Centers
- Translational Research and Drug Development in the Public and Private Sectors
- Pediatric Headaches
- Clinical Research Partnerships and Resources
I was assigned to the Clinical Research Partnerships and Resources working group. Our discussion focused on how partnerships can be formed and resources shared to both increase research funding and share resources to enhance the research. Such partnerships would involve:
- government agencies such as the NIH and institutes such as the NINDS
- industry such as pharmaceutical companies
- academia such as universities with research centers
- patient groups
In our discussion, it became obvious that we don't have a strong patient organization for Migraines and headaches as are often seen for other diseases. These organizations offers education and support resources. Their members also help raise funds for research. Examples:
- Breast cancer: Susan G. Komen for the Cure.
- Epilepsy: The Epilepsy Foundation.
- Multiple Sclerosis: The National Multiple Sclerosis Society.
You'll hear more about this as time goes on. I'm hoping to see an organization formed that will sponsor an annual conference for patients with educational opportunities, support workshops, and more.
Research funding will not increase overnight, but the work accomplished in this meeting should serve as a basis for:
- clearer understanding within the NIH of the needs of Migraine and headache patients,
- better understanding of the NIH research grant process,
- a mentoring process for new researchers applying for research grants, and
- partnerships that will increase funding and facilitate better use of existing resources.
The working groups formed at this meeting will continue working together to accomplish our goals. I'll keep you posted on both this work and the formation of a new patient group.
* The NIH and the participants in this meeting do indeed distinguish between Migraine and headache. In the context of this meeting, "headache" is an area of research that includes Migraine disease and other headache disorders.
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