Headache on the Hill is an annual advocacy event organized by the Alliance for Headache Disorder Advocacy (AHDA) to ask for equitable policies for people living with headache diseases. Although the members of the AHDA work hard all year long, Headache on the Hill (#HOH2022) is a powerful day when patients and providers unite to advocate together. The most special part of Headache on the Hill: patients and providers working as a team towards the common goal of equity in headache care.

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Here's a summary of what was discussed at this year's event, held on February 15, 2022:

Identifying issues faced by American Indian and Alaskan Native communities

The main ask this year is to establish Indian Health Service (IHS) headache centers of excellence, based on a similar model as the successful VeteransHealth Administration Headache Disorders Centers of Excellence (VHA HCoE),which were also created thanks to AHDA efforts.

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Headache disorders are remarkably disabling. Migraine alone affects about 60 million Americans and is the second leading cause of disability and first leading cause of disability for women under 50 years old in the US. American Indian / Alaskan Native (AI/AN) communities have the highest prevalence of disabling headaches (22% compared to16% in the general population). We are not sure why there is this 39% discrepancy, but one suspicion is that American Indian / Alaskan Native communities have twice the national average rate of concussion, which is the highest amongst all groups. One of the most common complications of concussion is persistent headaches. About half of American Indian / Alaskan Native patients seek care through the IHS where there is only one neurologist per 125,000 and no headache-certified doctor.

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The AI/AN communities are also underrepresented in medicine. Although 1.7%of the US population self-identifies as AI/AN, only 0.5% of US Neurologists identifies as AI/AN. In addition to being understaffed, the Indian HealthService (IHS) is underfunded. Its health care budget allows $4,000 per patient per year compared to the national average of $9,409. IHS hospitals are much older: 40years old, compared to the national average of 10.6 years. If the budget remains the same, newly built IHS or tribal facility would not be replaced for 400 years.

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In summary, the AI/AN communities have the biggest prevalence and burden in terms of headache disease and yet the least resources for care. This is utterly unacceptable given the Trust Responsibility the government has towards AI/AN communities after cessation of land, neglect, marginalization, boarding schools, and relocation. The Trust Responsibility and hence responsibility of the government to provide healthcare to Tribes and tribal members extends beyond reservations. About 71% of AI/ANs live in the urban areas off-reservations.

The AHDA team discussed this issue with AI/ANs stakeholders and came up with a proposal to address this issue: building IHS Headache Centers of Excellence on a similar model as the VA headache disorders centers of excellence to provide both direct care and telehealth to the AI/AN communities, to provide education and training about headache diseases to IHS providers, to conduct research in order to continually improve the care delivered to AI/AN communities. This proposal is supported by the Association of American Indian Physicians; National Council of Urban Indian Health; and Dr Mike Stitzer, whois the IHS National Chief Clinical Consultant in Neurology. There will be an emphasis on training tribal IHS headache centers of excellence health care providers, and on telehealth to reach all communities. The Indian HealthcareImprovement Act (which was part of the Affordable Care Act) enables medical providers who provide care to IHS patients to have a medical license in any state.

The AI/AN communities have the biggest burden and need in terms of headache disease and yet the least resources for care. They are also underrepresented in medicine and research. The COVID-19 health emergency further highlighted the healthcare disparities in this country, it is our responsibility and the government’s responsibility to work toward correcting the injustices of a long legacy of discrimination, exclusion, neglect, and land cessation, isolation, and relocation. The hope is that both Congress and Senate will be a favor of this ask and a bill to allocate $5 million to create and run for the first year 6 IHS headache centers of excellence will pass for the fiscal year 2023.

Anyone can get involved and help with headache advocacy. You can amplify the @AHDAorg and #HOH2022 messages through social media. You can apply to participate in Headache on the Hill next year. The applications usually open around November. All the Headache on the Hill participants understand how disabling headache diseases can be and do their best to work as a team and be supportive of one another.

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