WASHINGTON, DC—The Alliance for Headache Disorders Advocacy (AHDA) is talking to legislators to stress the need for more research that ultimately could benefit patients. Members of the organization are following up with 132 lawmakers whom they visited on Capitol Hill on February 11, 2014. Approximately 85 people, including neurologists and advocates for patients with cluster headache and migraine, took part in this annual event known as Headache on the Hill.
The AHDA went to Washington this year with three goals. The first was to ensure that the NIH includes at least three members with expertise in headache on a permanent peer review study section panel that reviews grant proposals for headache research. The second goal was to persuade the Centers for Medicare and Medicaid Services to reimburse patients who receive oxygen as a treatment for cluster headache. The AHDA’s final goal was for the Senate to make research on chronic migraine and postconcussive headache eligible for federal funding from the Congressionally Directed Medical Research Program.
Previous visits to Capitol Hill have resulted in several accomplishments, said William Young, MD, Professor of Neurology at Thomas Jefferson University in Philadelphia and a member of the AHDA’s executive committee. At the group’s urging, NIH began tracking its funding of migraine and headache research, Dr. Young told Neurology Reviews. On five occasions, the AHDA persuaded Congress to include report language in the congressional record that supported increasing NIH funding for research on headache disorders.
Members of the AHDA include professional organizations such as the American Academy of Neurology, the American Headache Society, the Headache Cooperative of New England, and the Headache Cooperative of the Pacific. The AHDA’s membership also includes patient advocacy groups such as Clusterbusters and the National Headache Foundation.
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| William Young, MD | Alan Rapoport, MD | Story Landis, PhD | Linda Porter, PhD |
Increased NIH Funding for Headache Research May Be Inadequate
One of the AHDA’s principal contentions is that the amount of NIH funding spent on headache research is disproportionally small in light of headache disorders’ burden on patients. Members cite the Global Burden of Disease Study 2010, which found that migraine causes 30% of the total disease burden and more than half of the disability burden attributed to neurologic diseases. “While the mission of the NINDS is to seek knowledge ‘to reduce the burden of neurological disease,’ NINDS spent less than 1% of its budget (ie, $15.4 million) on research related to headache disorders in 2013,” Robert Shapiro, MD, PhD, Professor of Neurological Sciences at the University of Vermont in Burlington, and past president of the AHDA, told Neurology Reviews. The total NIH funding for research on headache disorders was $25 million in 2013, which amounted to less than 0.09% of the NIH budget.
Nevertheless, “at a time when the NIH budget has been dropping in real dollars, … there’s been a substantial increase in migraine funding and headache funding,” Story Landis, PhD, Director of NINDS in Bethesda, Maryland, told Neurology Reviews. In 2010, NIH spent $18 million on headache research, compared with $25 million in 2013. “It’s still a very small amount of money,” added Dr. Landis, “but I think there has been a significant increase.”
The 2013 figure “represents a 31.6% rise in funding since 2010, while the total NIH budget was actually cut 6.7% during the same interval,” said Dr. Shapiro. “The increase in headache research funding is encouraging, welcome, and may partly reflect AHDA advocacy efforts, but realistically, NIH funding for migraine research alone would be expected to exceed $250 million annually when compared to the median funding of diseases with similar measured burden,” he added.
NINDS does not allocate specific funds for particular diseases. Instead, the institute invites investigators to submit grant applications, which undergo peer review. NINDS funds grant requests according to the review panels’ determinations about the submissions’ scientific excellence.
“One of the things that we’re finding difficult about increasing our spending for headache research is that the community of researchers in headache is relatively small, [compared with] a lot of the other neurologic disorders that we fund,” Linda Porter, PhD, Program Director of the Extramural Research Program at NINDS, told Neurology Reviews. “With a small community, we get a small number of grant applications.”
To increase the number of grant applications it receives, NIH supports career development programs for junior physician scientists, who are guided by mentors. At scientific meetings about headache and pain, NIH staff host workshops that teach investigators about the institute’s funding mechanisms and how to write and submit a successful grant application. The workshops are intended to explain the NIH process and to encourage investigators to request grants.