More than 40 million Americans live with headache disorders, yet many still struggle to receive timely diagnoses, access specialists or afford effective treatments. These challenges were front and center at the tenth annual Capitol Hill Policy Forum, where advocates, clinicians and policymakers gathered to discuss how federal policy can help close the persistent gaps in headache care.
Hosted by the Headache & Migraine Policy Forum, in partnership with the Alliance for Headache Disorders Advocacy (AHDA) during the AHDA’s annual Headache on the Hill, the briefing explored why the health care system continues to fall short for people living with migraine and other headache disorders, as well as what Congress can do to change that.
Why Headache and Migraine Care Deserve National Attention
Migraine is not simply a “bad headache”. It is a disabling neurological condition that affects millions and carries enormous personal, as well as economic costs:
· Underdiagnosis and undertreatment lead to $12 billion lost in productivity1.
· Each year, migraine costs patients around $13,000 in medical bills1.
· Migraine and headache disorders account for $78 billion lost in the national economy in the form of presenteeism and absenteeism1.
Despite these staggering numbers, headache disorders remain widely underdiagnosed, underfunded and misunderstood.
That reality is exactly why advocates and policymakers are pushing for solutions like the Headache Education, Access, Diagnosis, and Care Health Equity, or HEADACHE Act and the Safe Step Act, two federal policy proposals aimed at improving access to care and removing barriers that prevent patients from receiving the treatment they need.
A Congressional Call to Action
As a leading sponsor of the HEADACHE Act (H.R. 5536), introduced in September 2025, Congresswoman Lori Trahan (D-MA) called attention to the names and faces of migraine. The HEADACHE Act aims to improve early diagnosis, expand access to headache specialists, and increase funding for federal research to better understand and treat migraine and other headache disorders.
Congresswoman Trahan pointed to a critical workforce challenge within this disease state: too few physicians receive meaningful training in headache and migraine care. This training gap contributes to frequent misdiagnosis, delayed treatment and widespread mismanagement of migraine care.
She emphasized the disproportionate burden of migraine on women and shared stories from constituents living with chronic migraine – one of whom reflected on how earlier policy action could have changed her care journey.
“The experiences of my constituents put a human impact to the lived experience of the millions who live with migraine and headache,” said Congresswoman Trahan. “I believe no one should be left behind simply because their pain is invisible.”
The System is Failing Patients
Following the Congressional keynote, a panel of experts explored the real-world barriers patients face when trying to receive care for their headache or migraine.
Moderated by Annika Ehrlich, DNP, FNP-C, AQH, CNRN, a certified family nurse practitioner at the University of California, San Francisco, the panel brought together perspectives from clinical care, policy and lived patient experience.
· Nan Cheng, MD, Assistant Professor of Neurology at the University of California, Irvine
· Hanna Ahmaripour, MPA, Senior Congressional Affairs Manager, American Academy of Neurology
· Shay Hill, Patient Advocate and Project Coordinator
The discussion painted a clear picture of the structural barriers that continue to stand between patients and effective care:
· Patients’ migraine symptoms are overlooked. Shay Hill shared that after a serious car accident, her care team treated her broken neck but failed to address her migraine symptoms. Her story highlights how headache disorders are frequently underrecognized even in complex medical settings, delaying appropriate treatment.
· High treatment costs remain a major barrier. Hill noted that one of her prescribed migraine medications comes with a $1,900 copay, despite having insurance. Such steep out-of-pocket costs limit access to effective treatments.
· Prior authorization delays care and burdens providers. Dr. Cheng emphasized that prior authorization and step therapy requirements often slow clinical decision-making and reduce the time clinicians can spend with patients. These administrative hurdles shift focus away from medical need and contribute to treatment delays.
· Step therapy policies overlook clinical nuance. Panelists stressed that step therapy policies often force patients to “fail first” on treatments not recommended by their clinician. Combined with prior authorization and formulary barriers, these policies can prolong disability as patients wait for approvals or navigate lengthy appeals processes.
· Workforce challenges among headache specialists. Migraine remains widely underdiagnosed, in part due to limited headache training in medical education—often only one hour of education across an entire medical school curriculum are dedicated to headache and migraine. Dr. Cheng noted that this knowledge gap, paired with a nationwide shortage of headache specialists, leaves many patients traveling long distances or waiting months for care.
· Underfunding slows progress by shrinking the pipeline of new specialists and limiting essential research. Panelists shared that without stronger federal support, fewer clinicians pursue this specialty and progress stalls. Hanna Ahmaripour pointed to the HEADACHE Act as a key policy solution, proposing a National Headache Disorders Initiative to expand research, strengthen provider education and improve coordinated national response.
· Without federal action, gaps in care will continue to widen. Stronger federal investment, workforce development and targeted policy reforms are essential to improving diagnosis, expanding specialist access and enhancing quality of life for people with headache disorders.
Meaningful policy solutions are urgently needed to close the gap between what patients need and what the current health care system delivers. Events like the Capitol Hill Policy Forum help ensure that policymakers hear directly from the people most affected – patients, clinicians and advocates working every day to improve headache care.
1Headache & Migraine Policy Forum. (2025). The price of pain: Economic burden of migraine report. View report