Let’s change the status quo.

Headache disorders affect 90% of the US population. Their impact takes a staggering economic toll. Doctors are inadequately trained to treat them. Research into effective treatments is lacking. And yet, discriminatory policies remain unchanged. Chief among them is the long-standing need for more funding from the National Institutes of Health (NIH). America deserves better.

2024 Headache on the Hill Agenda

The AHDA places a national spotlight on government policies affecting the headache community. Our 2024 cohort of Headache on the Hill advocates represent all 50 states.

These are our current requests or asks: 




How Legislators Can Help


  • Establish a Congressional Caucus for Headache Disorders.


    Many health conditions are represented on Capitol Hill by a Congressional Caucus. Creating a bipartisan caucus for headache disorders could significantly raise awareness of AHDA initiatives. Members could introduce headache-specific legislation, support federal funding for research, and champion other legislative priorities of importance to our community.


    AHDA is actively pursuing the creation of a Congressional Caucus on Headache Disorders. Read more here.

  • Enable children with disabling headache disorders to receive special educational services


    Public school students with disabilities are entitled to special education services under the Individuals with Disabilities Education Act (IDEA). Currently, migraine and other headache disorders are not qualifying conditions.


    AHDA is seeking to have the federal government formally recognize “migraine or headache disorders” as a disabling condition that could qualify children in public schools for special education services and protections.  Read more here

  • Ensure headache patients affected by Long COVID are eligible for services under the CARE for Long COVID Act.


    AHDA is a member of the Long COVID Alliance. Long COVID has contributed to a marked increase in new headache cases and has worsened symptoms for existing patients. The Comprehensive Access to Resources and Education (CARE) for Long COVID Act supports expanding research, education, resources, and services for people with this illness. 


    AHDA seeks the recognition of “headache” as a post-virus condition in the CARE for Long COVID Act and urges the passage of this important bill. Read more here


  • Add “migraine screening” to the guidelines issued to clinicians by the Women’s Preventive Services Initiative (WPSI).


    The WPSI is a federally supported collaborative program led by the American College of Obstetricians and Gynecologists (ACOG). Its purpose is to recommend updates to the current Women’s Preventive Services Guidelines.


    The AHDA has submitted a recommendation supporting the inclusion of “migraines” to the WPSI Multidisciplinary Steering Committee.

  • Prioritize migraine and headache disorders funding when addressing women’s health funding gaps.


    The National Academies of Sciences, Engineering and Medicine have convened an Ad Hoc Committee to explore under-researched areas for women’s health and ultimately make funding priority recommendations. 


    The AHDA has submitted a comment supporting the inclusion of migraine and headache disorders as an area of priority for the Committee. Read AHDA’s comment here: AHDA NASEM Women’s Research Comment.

  • Establish dedicated headache clinics for underserved Native American populations.


    Native Americans bear the highest burden of headache disorders of any racial or ethnic group in the US. Currently, the Indian Health Service (IHS) does not have a single headache specialist or dedicated clinic to address their needs. 

    As a solution, AHDA has proposed the creation of Headache Centers of Excellence (HCoE) for the IHS. This program is modeled on a successful AHDA initiative implemented for the Veterans Health Administration (VHA). Currently, 28 HCoEs are planned for the VHA. 


    AHDA has accomplished the first step of this initiative by obtaining appropriations report language. Now, we seek a firm commitment to the program and funding.

    • FY23 Bill Report language: “The Committee recognizes that over 560,000 people under IHS care are living with migraine or severe headache disorders and that American Indian and Alaskan Native [AI/AN] communities have the highest prevalence of both disabling headache disorders and concussion/mild traumatic brain injuries among any racial or ethnic group in the United States. The Committee is concerned that AI/AN patients with these and other disabling headache disorders often do not receive necessary specialty care. There are currently no IHS-affiliated physicians certified with training in the specialty field of Headache, and there is an insufficient number of IHS neurologists overall. The Committee encourages IHS to consider the feasibility of establishing Headache Centers of Excellence in future fiscal years.”
  • Improve access to specialized headache care in underserved rural communities.


    Rural Americans face many barriers to quality healthcare. Over the last 15 years, the Conrad 30 program has enlisted more than 15,000 physicians to work in rural, inner city, and other medically underserved areas. Program participants are international physicians who completed their residency in the US. 

    The Conrad State 30 and Physician Access Reauthorization Act would allow international doctors to remain in the US if they practice in areas experiencing doctor shortages. Among international medical graduates, 32% are active neurologists. 


    AHDA has signed on to multiple letters of support for the Conrad State 30 and Physician Access Reauthorization Act. 


  • Increase diversity among participants in clinical drug and treatment trials.


    Communities of color are underrepresented in clinical trials. The disproportionate impact of COVID-19 on minority communities demonstrates the need to include all ethnic/racial backgrounds in these tests.


    AHDA supports the Diversifying Investigations Via Equitable Research Studies for Everyone (DIVERSE) Trials Act



  • Ensure fair disability evaluations for Social Security Disability Insurance (SSDI) claimants living with headache disorders.


    Many disabling diseases, such as migraine, have no physical signs or lab findings to confirm a diagnosis or quantify their impact. Symptoms may be the only way to know if someone has an “invisible” disease. It is unfair and a violation of federal statutes for Americans disabled by any “invisible” illness to be less eligible to qualify for SSDI/SSI benefits.

    SSDI claimants for migraine have among the lowest participation rates relative to migraine disability burden. Further, among those few individuals who file claims for SSDI due to migraine, the initial allowance rates are exceptionally low (23%) relative to all claimants (46%). 


    AHDA has drafted the Patient-Centered Disability Evaluation Act (PCDE) to address deficiencies in the SSA disability evaluation process. PCDE will require evaluations to consider a patient’s needs, experiences, point of view, and priorities.


  • Ensure Veterans with toxic exposure-related headache disorders receive the same benefits? as other disabled Veterans covered under the PACT ACT.


    The PACT Act expanded VA health care and benefits to Veterans exposed to burn pits, Agent Orange, and other toxic substances. The law added 23 toxic exposure-related conditions to the list of service presumptions. 

    While the AHDA applauds the passage of the PACT Act, we are disheartened at the exclusion of headache disorders. 


    AHDA is advocating for necessary changes to federal policies to ensure Veterans experiencing headache disorders as a result of service related exposure to these substances are deemed eligible for the care and benefits they deserve. 

  • Safeguard and expand funding for Headache Disorders Centers of Excellence (HCoEs) within the Veterans Health Administration (VHA).


    Studies show Veterans are more likely than civilians to develop migraines and chronic headaches than civilians. 

    In 2018, AHDA succeeded in getting Congress to fund Headache Disorders Centers of Excellence (HCoEs) within the VHA. HCoEs provide specialized headache care for Veterans, conduct research, and train physicians in headache treatments. The initial funding was for at least five centers. In 2019, 2020, 2021, and 2022, AHDA persisted with its advocacy work, and the number of centers grew to 28. Currently, plans are underway to expand to a total of 28 more VHA HCoEs nationwide to serve Veterans living with disabling headache disorders. Read more. 


    AHDA will continue advocating for additional funding, research, and recognition for Veterans with headache disorders.


  • Preserve life-changing telehealth services for Medicare recipients.


    Telehealth services launched during the COVID-19 pandemic have provided life-changing services to more vulnerable populations. The Telehealth Extension and Evaluation Act would allow the Centers for Medicare & Medicaid Services to extend existing telehealth services for an additional two years. The bill would also commission a study to inform Congress’ plans to make telehealth flexibilities permanent.


    AHDA has signed letters of support for the Telehealth Extension and Evaluation Act.

  • Improve step therapy protocols and ensure patients can access their recommended treatment plan in a timely manner.


    Health plans use step therapy to control medical costs. When a doctor prescribes a specific medication, the patient’s insurance company may require different drugs/treatments to be tried first before the original prescribed drug.

    While step therapy can reduce spending, it can also harm patients. These dangers include delayed access to the best treatment, severe side effects, and faster disease progression.

    The Safe Step Act would require insurance companies to set up a clear process for a patient or doctor to ask for an exception to a step therapy protocol.


    AHDA has signed letters of support for the Safe Step Act.

  • Modernize Medicare Advantage to better serve America’s seniors.


    Medical procedures and testing require prior authorization in many Medicare Advantage programs. Often, documentation must be submitted by fax. The Improving Seniors’ Timely Access to Service Act proposes an electronic permission process to cut red tape and speed up care.


    AHDA has signed letters of support for the Improving Seniors’ Timely Access to Care Act.