We’re pleased to update you on the interim progress of 2010 AHDA legislative efforts.
As previously mentioned, 2009 AHDA efforts led to report language regarding headache disorders that was included in the fiscal year 2010 House appropriations bill (see report language). This report language specifically requested that NIH send a report on their progress towards defining Headache Disorders Research Benchmarks to the Committees on Appropriations. The NIH report that resulted from this congressional request outlined the NIH programs that have been available over the past several years for headache researchers, as well as the steps NIH has taken to organize the major research planning meeting which ultimately took place in Bethesda, MD on May 16th and 17th.
The May research planning meeting was attended by over 50 participants drawn from academia, industry, government, non-profit groups, and patient advocates. Clinicians, basic scientists, and patients were represented. Some researchers from outside of the headache research community were invited to participate to provide other useful perspectives. AHDA officers, Bob Shapiro, Teri Robert, and Bill Young, were among the participants.
The stated goal of the meeting was to “identify gaps and opportunities in the field and hopefully serve as a catalyst to encourage researchers to pursue studies in this area.” Five general areas were focused upon to be most promising for the near-term investment of NIH resources leading to the highest quality studies of the highest priority research questions. These areas had been chosen at a preliminary meeting held in Seattle in April 2009, and included
- Animal Models and Research,
- Academic Headache Centers,
- Translational Research and Drug Development in the Public and Private Sectors,
- Pediatric Headaches, and
- Clinical Research Partnerships and Resources.
The meeting opened with a keynote address by Dr. Story Landis, Director of the National Institute for Neurological Disorders and Stroke, the NIH institute most responsible for funding research on headache disorders. She confirmed that the current year estimate of total NIH funding directed towards headache disorders research constitutes only ~$9M, but that the Institute was eager to fund high quality headache research proposals and sought the guidance of the meeting participants towards identifying further areas for development. Other meeting plenary speakers included Drs Steven Silberstein, Peter Goadsby, Marcelo Bigal, and William Maixner. The meeting participants subsequently broke into study groups devoted to each of the five focus areas and then reported back to the assembled participants with overall recommendations for next steps to be implemented by NIH. These recommendations are currently being assembled and considered by NIH staff.
To ensure that the outcomes and recommendations of this important planning meeting remain prioritized by NIH, Senator Patrick Leahy and Representative Peter Welch sent a letter of support and concern to NIH Director, Dr. Francis Collins on April 30th. As a result of the congressional office contacts made by AHDA advocates during Headache on the Hill on February 23rd, as well as the 1900+ email messages sent through our website by AHDA activists to congressional offices, the Leahy-Welch letter was cosigned by eight US Senators and eleven US Representatives. The Leahy-Welch letter prompted a written response from Dr. Landis to each of the congressional co-signers that reviews the next steps that NIH anticipates in the process to increase headache research (see letter).
In addition to the planning meeting in May, another key consequence of AHDA advocacy this spring was the announcement that, for the first time, a migraine research scientist will become a member of a standing NIH Center of Scientific Review Study Section for a three-year term. Study sections are the pivotal committees that provide peer review of grant proposals submitted to NIH for funding. This development begins to level the playing field for migraine researchers by ensuring that their grant proposals are truly reviewed by a peer. AHDA will continue to press for further representation of headache disorders researchers on these crucial review panels.
Overall, we’re very pleased with the progress made this year to date towards increasing research on headache disorders. The NIH planning meeting looks to be a very good start. We eagerly anticipate the reporting and the implementation of the recommendations of the May meeting participants. We will post these recommendations at this site when they become available. Finally, starting next year we will track and report any changes in total funding for research in this field reported by NIH. This new transparency in NIH funding levels for headache research is also a direct consequence of AHDA advocacy.
Thanks once more for your efforts on behalf of patients with headache disorders. We are making real progress, but there is far more left to accomplish before acceptable therapies are available for disabling headache disorders.
Best regards,
Bob Shapiro
Alliance for Headache Disorders Advocacy 