OJAI, CA—Headache and migraine disorders research is underfunded but can be advanced through political advocacy, according to Robert Shapiro, MD, PhD, Professor of Neurology at the University of Vermont College of Medicine in Burlington. At the Fifth Annual Winter Conference of the Headache Cooperative of the Pacific, Dr. Shapiro called on the headache community to obtain greater funding and attention from members of Congress.
Headache’s prevalence and burden as a neurologic disorder are not reflected in the amount of federal funding awarded for research, Dr. Shapiro noted, citing a World Health Organization estimate that migraine results in more lost years of healthy life in the United States than epilepsy, multiple sclerosis (MS), tuberculosis, and ovarian cancer combined. “It’s really one of the most disabling neurologic conditions,” he said.
Yet epilepsy, MS, tuberculosis, and ovarian cancer collectively receive 45 times more funding than migraine receives from the NIH, a disparity that Dr. Shapiro believes should be addressed. Headache disorders are “extremely prevalent and … extremely costly,” he said, as 19% of all Americans will experience a form of migraine this year, and headache accounts for 9% of health-related lost labor productivity and more than $31 billion in total economic costs. Despite the impact of migraine on patients’ quality of life, only one NIH intramural investigator works on migraine research part-time, and no NIH branch, center, or permanent study section is completely devoted to pain. “It’s a lonely, underfunded disorder,” said Dr. Shapiro, adding that the NIH does not use disease burden as an important formal criterion when prioritizing funding.
According to Dr. Shapiro, the low level of federal funding contributes to a neglect of the profession. He cited data showing that high-impact journals are less likely to publish papers and that neurologists avoid headache as a specialty, with fewer than 5% of neurologists joining the American Headache Society.
At a recent Society for Neuroscience meeting, 22 of the total 14,229 presentations were about headache disorders. “And that’s discouraging,” said Dr. Shapiro. “It discourages people who have an interest in actually pursuing an investigative career from going into this field at all. There’s a message sent down that this is death to your career.”
Dr. Shapiro noted that the lack of public research funds contributes to an “excessive reliance” on the pharmaceutical industry to develop new treatment. He added, “There’s almost no money from private philanthropy at all, relative to the size of the problem.”
Ultimately, not enough innovative headache drugs are being developed, he said. Since 1992, the FDA has approved seven new molecular entities for migraine, all of them triptans, compared with 14 new drugs for epilepsy.
To ensure headache research receives enough funding, Dr. Shapiro founded the Alliance for Headache Disorders Advocacy (AHDA),
a national organization that advocates for the interests of headache patients as well as the field of headache medicine.
Since 2008, the AHDA has focused on personally meeting with members of Congress who have jurisdiction over the NIH. “Showing up makes a difference,” Dr. Shapiro said. “Sometimes you get validation and sometimes you don’t, but it’s really necessary to go. And we’ve been going.”
Through a yearly Washington advocacy program called Headache on the Hill, the AHDA has consistently met with members of Congress to seek equitable funding for headache disorders research. Dr. Shapiro emphasized the importance of expanding the number of people involved in the advocacy group, as senators and representatives will only make appointments with constituents from their own districts. Securing appointments with key committee members “requires a broad, national scope,” he said.
Thus far, the AHDA’s efforts have led to the inclusion of headache and migraine as annual NIH expenditure reporting categories. To improve the fairness of peer review, the NIH has appointed two headache disorders research scientists to three-year terms of a standing NIH study section. Furthermore, “Congress sent unambiguous language to the NIH about the need for a headache benchmarks process in the appropriations committee reports for the fiscal year 2009 budget and in the fiscal year 2010 budget,” Dr. Shapiro told Neurology Reviews.
He explained that the AHDA would like the headache community to have a benchmarks program similar to that of the epilepsy benchmarks program. Benchmarks would “guide investigators to write grants on research questions that would be more fundable, since they would already be vetted by both the NIH and a consensus of the field,” said Dr. Shapiro.
However, more than three years after the initial congressional request, the NIH issued a report that did not change the amount of projected funding and did not include benchmarks. Dr. Shapiro speculated that the NIH might be waiting for quality grant proposals to be submitted before increasing funding, while potential clinical investigators may be waiting for a promise of funding before submitting grant proposals. “The Society of Neuroscience has 42,000 members, and they’re all hungry for an NIH grant,” commented Dr. Shapiro. “If the NIH funds it, they will come.”