Standing Up for Children with Headache Disorders: Our Coalition Urges Federal Action
This week, the Alliance for Headache Disorders Advocacy (AHDA) led a coalition of 14 other organizations in sending a powerful message to the White House and the U.S. Department of Health and Human Services: children living with migraine and other headache disorders deserve urgent attention, investment, and support.
Our organizational sign-on letter, addressed to President Trump and Secretary Robert F. Kennedy Jr., calls on the newly formed Make America Healthy Again Commission to prioritize pediatric migraine and headache disorders—an area long overlooked in public health policy despite its devastating impact on children and adolescents across the country.
A Silent Public Health Crisis
More than 14 million children and adolescents in the U.S. experience headache disorders, including but not limited to, migraine, cluster headache, tension-type headache, and post-traumatic headache. Of these, nearly a million live with chronic migraine, enduring pain 15 or more days per month. These conditions interfere with school, sleep, emotional well-being, and the overall quality of childhood—and yet they remain grossly underfunded, under-researched, and misunderstood.
As we noted in the letter, these disorders not only cause tremendous suffering but also pose a long-term risk for lifelong disability, depression, and even suicidality. Migraine and chronic headache are not just adult issues—they often start in childhood, and early intervention is critical.
Our Specific Policy Recommendations
In alignment with the Commission’s focus on reducing chronic illness in children, we urged the administration to take the following actions:
- Invest in pediatric headache research, including translational and clinical research, especially through NIH’s HEAL Initiative.
- Develop pediatric-specific clinical trials and treatment guidelines, recognizing the gaps in FDA-approved therapies for children.
- Expand research into and access to non-pharmacological and device-based treatments like neuromodulation and behavioral therapies.
- Ensure migraine is included in all future discussions of pediatric chronic disease.
- Protect educational rights under Section 504 and IDEA for students living with disabling headache disorders.
We also formally requested that AHDA be included in the Make America Healthy Again Commission’s future discussions to ensure that migraine and other headache disorders are appropriately addressed in pediatric health policy.
A Unified Advocacy Effort
We are proud to have led this letter and grateful for the partnership of the following co-signing organizations, representing the breadth and depth of the headache, neurology, and chronic illness communities:
- Alliance for Women’s Health and Prevention
- American Academy of Neurology
- American Headache Society
- Chronic Migraine Awareness, Inc.
- Cyclic Vomiting Syndrome Association
- Danielle Byron Henry Migraine Foundation
- Headache Cooperative of the Pacific
- Migraine at School
- Miles for Migraine
- MigraineNation
- National Headache Foundation
- NDPHaware, Inc.
- The Headache & Migraine Policy Forum
- US Pain Foundation
Together, we are amplifying the voices of millions of children and families who have long been left behind.
What’s Next
We hope this letter will serve as a catalyst for change. In the weeks ahead, we will continue engaging with federal partners to elevate the needs of the pediatric headache community and ensure these conditions are no longer ignored in national public health efforts.
If your organization would like to collaborate or learn more about our advocacy, please reach out—we welcome partnerships that center equity, lived experience, and the health of our children.