Hope. Equity. Justice. Action.

Tuesday, February 15, 2022 marks the 15th Annual Headache on the Hill (HOH) advocacy event sponsored by the Alliance for Headache Disorders Advocacy (AHDA). Since 2007, healthcare professionals, caregivers, and patients stand together to advocate for more equitable federal policies towards Americans with disabling headache disorders. Led by AHDA leaders, Dr. Bob Shapiro and Katie MacDonald, we, as constituents, speak with Congress about selected concerns from the headache medicine community. This initiative has expanded exponentially over the years and American Headache Society (AHS) members have been instrumental in the growth. In 2007, there were 45 advocates, representing 29 states, who visited 136 Congressional offices. This year, we have 208 advocates, representing 48 states, who will be virtually visiting 265 Congressional offices! Of the 70 healthcare professionals, 65 are AHS members! AHS members embody the mission to improve the lives of people living with headache disorders. Our AHS members give me HOPE as a headache specialist and a person living with migraine.

HOH has 2 Asks this year. The first centers on EQUITY. US American Indian and Alaskan Native (AI/AN) communities have the highest prevalence of disabling headache disorders. Yet, access to neurologic care is extremely limited in the Indian Health Services (IHS), with less than 20% of the overall US neurologists per capita. In addition, there are no IHS doctors that are certified in the specialty of Headache Medicine. Extrapolating from the success of the Veterans Health Administration Headache Disorders Centers of Excellence (HCoEs), we propose the development of IHS HCoEs to participate in direct care, telehealth, consultation, education, training, and research in headache disorders in the AI/AN community. We are requesting for Congress to support Interior, Environment, and Related Agencies Appropriations to establish IHS HCoEs. We stand together for EQUITY.

The second Ask is about JUSTICE. Congress has long demanded that the NIH consider disease burden in funding decisions. The NIH has even committed to doing so. However, year after year, migraine is the least-funded area of research relative to its very high burden of disease with a 14-fold disparity in 2017. Meaning that migraine was funded $22 million, when per disease burden, it should have been funded $310 million! The NIH knows how to address this disparity because they have done it for other under-researched diseases. The NIH can issue disease-specific funding opportunity announcements (FOAs) with set-aside funds. The NIH can make disease-specific payline shifts. These tried and true actions by the NIH can incentivize the best and brightest to study migraine and other headache disorders. Regardless of Congressional requests or mandates, the NIH has chosen to ignore this disparity with action. We are asking for Congress to request the US Government Accountability Office to review and report NIH research funding relative to disease burden, with a focus on headache disorders. We stand together for JUSTICE.

This is advocacy in ACTION. You can take action too! We need you to amplify our voice through social media. Please follow the hashtag #HOH2022 and engage with likes, retweets, and quote tweets. Consider adding the handles of your Congresspersons (https://www.house.gov/representatives/find-your-representative). Create content about #healthcaredisparities in #AIAN communities. Or about exciting headache disorders research to emphasize how much more can be done with more equitable funding. We are stronger together – healthcare professionals, caregivers, and patients. Together, we can transform today’s barriers into tomorrow’s solutions through HOPE, EQUITY, JUSTICE, and ACTION.

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