(Washington, DC) February 15, 2022. The Alliance for Headache Disorders Advocacy (ADHA) unveiled a plan to improve health care access for the American Indian/Native Alaskan (AI/AN) communities at its 15th Annual Headache on the Hill Advocacy Day on Tuesday. The plan, if enacted, would establish Headache Centers of Excellence within the Indian Health Service to treat headache disorders, which disproportionately impact the AI/AN communities. Over two hundred advocates from forty-eight states across the country participated in well over two hundred and fifty meetings with lawmakers on the Hill to urge them to support the new appropriations item in the FY23 budget. Headache on the Hill advocates included headache disorders patients, caregivers, medical professionals and researchers with an acute understanding of the impact of headache disorders on a person’s life.
Disabling headache disorders are a major under-recognized health problem, especially within AI/AN communities, with broad negative impacts on quality of life. Migraine in particular, is the second leading cause of global disability, and AI/AN communities experience the highest prevalence of chronic migraine and severe headache disorders of any other racial or ethnic group in the United States. This increased prevalence particularly effects AI/AN men and children, and may be related to many factors, including the fact that the incidence of traumatic brain injury and concussion among the community is twice the national average. Unfortunately, existing resources within the Indian Health Service to address this problem are minimal. Access to care by a Neurologist within the Indian Health Service is less than one seventh that of the US national average, and there are no doctors at all within the Indian Health Service with specialty UCNS-certification in the field of Headache Medicine.
This problem is in many ways comparable to that which existed, until recently, among US veterans with post-traumatic headache disorders. However, the Alliance for Headache Disorders worked closely with Congress over the past decade to ensure that access to this specialty care is available for all veterans who need it. In FY2018, Senator Schatz(HI-D) secured appropriations to establish a system of Veterans Health Administration Headache Disorders Centers of Excellence (VA HCoEs). The expansion of the VA HCoEs was a central ask from the Alliance for Headache Disorders Advocacy at last year’s Headache on the Hill and resulted in sending strongly bipartisan supportive Dear Colleague letters to the Appropriations Committees signed by 51 Representatives and 14 Senators. It is anticipated that thanks to that effort the VA HcOE system will expand from 14 to 28 national sites in the coming year. The Alliance for Headache Disorders Advocacy hopes to build upon these successes at this year’s Headache on the Hill.
To address these health disparities within the AI/AN communities, the Alliance for Headache Disorders Advocacy has proposed a relatively inexpensive federal solution, creating Indian Health Service Headache Disorders Centers of Excellence. These Centers would be modeled on the existing VA Headache Centers, and would also build on the precedent of existing IHS Centers of Excellence for Telebehavioral Medicine. The Alliance estimates that the Centers could be created with just a $5 million dollar per year budget allocation. The organization is insistent that the $5 million dollar allocation be in addition to the Indian Health Service’s existing budget and be used to establish six new sites across the twelve Indian Health Service service areas, acknowledging that the Indian Health Service has been historically and persistently underfunded. The Indian Health Services serves approximately 2.56 million American Indian/Alaska Natives. Eligibility is based on enrollment in one of the 574 federally recognized sovereign Tribal Nations. Headache Centers of Excellence would provide direct patient care, as well as research to improve care that is AI/AN centered. There would also be an emphasis on training and hiring tribal providers and staff.
“Headache disorders disproportionately impact the American Indian and Alaskan Native communities and yet, these same communities currently have shockingly low access to high quality treatment options. Our proposal would provide much needed additional funding to the underfunded Indian Health Services system and begin to achieve equity in headache medicine care for these communities. Our Indigenous communities deserve better and the Alliance for Headache Disorders Advocacy will continue to work tirelessly to ensure every American living with headache disorders can receive timely, quality, affordable healthcare,” said Julienne Verdi, Executive Director of the Alliance for Headache Disorders Advocacy.
“Despite American Indians and Alaska Natives being disproportionately affected by disabling headache disorders, access to specialty care for this chronic condition is extremely limited within the Indian health care system. Creating the IHS Headache Disorders Centers of Excellence will ensure that Indian country is not left behind, and we are grateful for the advocacy of ADHA in ensuring that our communities have access to the care they deserve.” Francys Crevier (Algonquin), CEO of the National Council of Urban Indian Health (NCUIH).
In addition to advocating for the establishment of Headache Centers of Excellence within the Indian Health Service, Headache on the Hill Advocates also presented a legislative ask that the House Energy and Commerce Health Subcommittee request a Government Accountability Office report on NIH funding relative to disease burden in particular for headache disorders. Despite seventeen Report Language statements issued by Congressional Appropriations since FY2009, urging increased NIH funding for migraine and headache disorder research, little has changed. According to the analysis done by NIH, migraine and headache disorders continue to be the least funded research area relative to its very high disease burden. Advocates shared their experiences during their meetings on social media using the hashtags #HOH2022 and #HeadacheOnTheHill.
“We are thrilled to have so many advocates from across the country standing together today from all over the country at our 15th Annual Headache on the Hill event to make the case for equitable policies for people with headache disorders. This year’s advocates represent a record number of states for us and we know with their help and the continued support of our champions in Congress, we will reduce the stigma associated with headache disorders and increase access to care and funding to improve the quality of life for our community,” added Verdi.
The Alliance for Headache Disorders Advocacy is a 501(c)(6) nonprofit organization that advocates for equitable policies for people with headache disorders. Its member organizations include the Alliance for Patient Access, American Academy of Neurology, American Headache Society, Chronic Migraine Awareness, Clusterbusters, Cluster Headache Support Group, Coalition for Headache and Migraine Patients (CHAMP), Headache Cooperative of New England, Headache Cooperative of the Pacific, Miles for Migraine, National Headache Foundation, Southern Headache Society, Spinal CSF Leak Foundation. Each year the organization hosts its annual Headache on the Hill Advocacy Day. The Alliance for Headache Disorders Advocacy unites health professionals, migraine & cluster headache advocates and patients to present its requests or “asks” of Congress. These asks are typically focused on improving awareness about the impact of headache disorders and the need for research funding. Headache on the Hill began in 2007 and included 45 participants. The event has grown to over 200 participants in 2022.