Advocates Visit Capitol Hill to Encourage Greater NIH-funded Research

March 10, 2009

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Headache disorders exact more than $31 billion in economic costs in the US annually, including nine percent of all lost labor productivity. Current National Institutes of Health (NIH) expenditures for research on headache disorders are less than $13 million annually, comprising less than 0.05 percent of the NIH budget. Federal research funds are the key to fundamental discoveries that accelerate drug development and expand the field of headache medicine. As a consequence of insufficient research, only one innovative drug has received FDA approval for migraine treatment in the past forty years. The 37 million Americans with migraine and 12 million Americans with chronic daily headache have been left to manage their disabling conditions with a very short list of variably effective therapies.

Braving the cold on the Supreme Court steps, the 2009 Headache on the Hill
Advocates pause before visiting Congressional offices on February 24.

In response to this glaring disparity, a group of 35 neurologists, clinicians, research scientists, and concerned advocates visited Capitol Hill February 24 to educate legislators about the need for greater NIH funded research. The group, including 22 Academy members, visited 127 congressional offices from 27 states. These visits included more than 60 percent of the offices with members on the House and Senate committees that authorize or appropriate funding for NIH. The two primary legislative goals of the event were:

  1. Inclusion of language in the fiscal 2010 appropriations bill that requests specific measures to prioritize headache research at NIH
  2. Requesting co-sponsorship of the National Pain Care Policy Act of 2009, which provides for improvements in pain care and increased research on pain

February 24 marked the second Headache on the Hill (HOH). The first event, in September 2007, ultimately led to inclusion of congressional report language expressing a strong interest in increased NIH attention to headache disorders research.

"It's very encouraging to see physicians and advocates who are so committed to a cause that they are willing to use their own resources to travel to Washington and voice their concerns to Congress," said Academy staff member Melissa Larson.

Headache on the Hill was conceived as an action plan by Robert E. Shapiro, MD, PhD (University of Vermont), and Kathy L. Gardner, MD (University of Pittsburgh), at the 2007 Palatucci Advocacy Leadership Forum. HOH is modeled on the Academy's highly successful Neurology on the Hill, and is a primary vehicle of the new organization, the Alliance for Headache Disorders Advocacy (AHDA). The AHDA is comprised of nine national and regional organizations that share a common interest in supporting the needs of patients with headache disorders and the clinical field of headache medicine. The Academy is a member organization of the AHDA and Academy staff, Melissa Larson and Mike Amery, Esq., were involved in both Headache on the Hill events.

"As a patient and a patient advocate, I believe it is essential not only that headache disorders research funding be increased, but also that patients participate in the action alerts to email their members of Congress. In addition to encouraging more research funding, this helps patients to take ownership of and responsibility for getting appropriate diagnosis and treatment," adds Teri Robert, Webmaster of the AHDA's website and participant in both HOH events.

For more information, and to contact your members of Congress, please visit the Alliance for Headache Disorders Advocacy website.