Learn how advocates called for new Headache Centers of Excellence and look to hold the National Institutes of Health accountable for prioritizing funding.
On Feb. 15, 2022, migraine advocates and American Migraine Foundation moderators, ambassadors, advocates attended the 15th annual Headache on the Hill, the advocacy event hosted by our partner, the Alliance for Headache Disorder Advocacy (AHDA). The annual event unites patients, healthcare providers and researchers as they present requests or “asks” to lawmakers. While asks can vary from year to year, all of them push for increased migraine awareness and better care for the 39 million Americans affected by this disabling disease. This year’s event was entirely virtual with over 200 advocates from 48 states. The following nine AMF leadership members and ambassadors attended:
- Kelly Amspacher
- Sarah Arndt
- Christy Chafe
- Christine Cottrell
- Rachel Koh
- Heather Phillips
- Marley Robertson
- Ronetta Stokes
- JP Summers
“This year’s success at Headache on the Hill was possible because of the resilient advocates, patients and 65 AHS providers who showed up ready to make a difference. This work takes every voice, in person and at home,” says AMF Executive Director Nim Lalvani.
Thank you to the offices of @RepJaredGolden and staffer Will Woodworth for meeting with Team NH/ME #HOH2022. I am thankful to @AHDAorg for the opportunity to represent our team and advocate for justice & equity in #migraine and #headache @amfmigraine pic.twitter.com/1PP2nZnXSU
— Heather M Phillips (@Health_Mama) February 15, 2022
This year, advocates presented lawmakers with two requests:
1. Indian Health Service Headache Disorders Centers of Excellence
U.S. Native American and Alaskan Native communities experience the highest prevalence of disabling headaches. More than 560,000 people, or 22.1% of 2.56 million, under the care of the Indian Health Service (IHS) experience migraine or severe headaches. Advocates proposed establishing a new Headache Disorders Centers of Excellence program that would include direct care, telehealth, consultation, education, training and research.
An infographic created by the AHDA highlights how migraine among Native American and Alaskan Native populations is currently addressed by the IHS. Two key takeaways from the report found:
- The IHS doesn’t have a single doctor with a United Council for Neurologic Subspecialties certification in headache medicine
- The IHS has only one neurologist for every 125,000 people in the Phoenix/Navajo service areas
Indigenous people have highest prevalence of disabling headache disorders of any racial or ethnic group in US. We're asking Congress to establish Headache Centers of Excellence (HCoE) in the Indian Health Service to improve equity in care. #HOH2022 #Migraine #HeadacheDisorders
— Diana Lee (she/her) (@dianaelee) February 15, 2022
2. U.S. Government Accountability Office report on National Institutes of Health funding relative to disease burden, especially for headache disorders
At the direction of Congress, the National Institutes of Health (NIH) has been asked to consider disease burden in their funding decisions, and the NIH has committed to doing so. The House Committee on Appropriations expects the NIH to take the burden of a disease into consideration when setting priorities. However, the NIH hasn’t practiced this.
The AHDA called on Congress to issue a nonpartisan Government Accountability Office (GAO) report on the NIH’s funding priorities. This AHDA report shows the NIH’s funding priorities. Specifically, the report indicated:
- Migraine is the least-funded research area relative to its very high burden.
- Congressional Appropriators have issued 17 report language statements since 2009 that would support the increased funding for the research of migraine and headache disorders but the NIH has not made any specific programs for this.
- The GAO has not reviewed the NIH’s funding priorities, including disease burden, in more than 5 years.
- Migraine research is mandated to be prioritized as an under-funded pain disorder.
Yet, @NIH consistently fails to prioritize its funding relative to disease burden for some diseases it has repeatedly identified as under-funded relative to burden (most extremely #migraine & #headaches).
— Robert Shapiro (@headachedoc) February 15, 2022
Thank you to all of the advocates who attended this year’s Headache on the Hill. We are delighted that the migraine community showed up in numbers, raised their voices and advocated for change. We are excited to see what comes of this year’s event and the impact we are able to make. Together, we are as relentless as migraine.
The American Migraine Foundation is committed to improving the lives of those living with this debilitating disease. For more of the latest news and information on migraine, visit the AMF Resource Library. For help finding a healthcare provider, check out our Find a Doctor tool. Together, we are as relentless as migraine.