Our Work

BACKGROUND: 

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.

ACTION:

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

BACKGROUND:

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.

ACTION:

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. 

BACKGROUND:

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. 

ACTION:

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.

BACKGROUND:

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.

ACTION: 

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

BACKGROUND:

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. 

ACTION:

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.

BACKGROUND:

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. 

ACTION:

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

BACKGROUND:

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.

ACTION: 

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

BACKGROUND:

The Government Accountability Office (GAO) produces fact-based, non-partisan information for use by Congress. 

ACTION: 

AHDA has asked Congress to request a GAO Report into the disparity between NIH funding and the disease burden for migraine and headache disorders.

BACKGROUND:

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%). 

ACTION: 

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.

BACKGROUND

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. 

ACTION:

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. 

BACKGROUND:

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. 

ACTION:

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

BACKGROUND:

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.

ACTION:

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

BACKGROUND:

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.

ACTION:

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

BACKGROUND:

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.

ACTION:

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

Establish Headache Centers of Excellence within the Indian Health Service to treat headache disorders, which disproportionately impact the US American Indian / Alaskan Native (AI/AN) communities.

AI/AN communities have the highest prevalence of disabling headaches. Over 560,000 people (22.1% of 2.56 million) under Indian Health Service care have migraine or severe headaches. The IHS doesn’t have a single doctor with a United Council for Neurologic Subspecialties certification in headache medicine. There is only one neurologist for every 125,000 people in the Phoenix/Navajo service areas. AHDA proposes a new Headache Disorders Centers of Excellence program to include direct care, telehealth, consultation, education, training, and research.

Issue a nonpartisan Government Accountability Office (GAO) report on National Institutes of Health (NIH) funding relative to disease burden in particular for headache disorders. 

The request, directed to the House Energy and Commerce Health Subcommittee, cited the following: 

• 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.

Request a $50,000,000 line item for headache disorders research from FY2022 Helping to End Addiction Long-term (HEAL) appropriations.

The NIH HEAL Initiative must focus on headache disorders to reduce disease burden and opioid prescribing.

Provide $25,000,000 appropriation to fund expansion of VA Headache Disorders Headache Centers (HCoEs) to ensure equitable access to care for disabled veterans.

Currently 1,633,052 VHA veterans are diagnosed with a headache disorder, and 621,000 are diagnosed with migraine. Expansion would increase the number of headache disorder centers from 14 to 28, allowing access to specialty headache care for all VHA veterans in need.

Amend title XVIII of the Social Security Act to provide for the distribution of additional residency positions to help combat the opioid crisis.

Few physicians receive adequate training to effectively diagnose and treat migraine and other headache disorders. This lack of knowledge is due to (1) Most medical schools do not have a curriculum in headache medicine; (2) The majority of primary care physicians who provide first line headache evaluation and treatment recommendations never receive formal training in headache medicine, and (3) While neurologists are the specialists most likely to care for patients with headache, their training in this field is inadequate.

Request “HEAL Headache” RFAs focused on fundamental, translational, and clinical research on headache disorders, and comparable to the scope and magnitude of the BACPAC HEAL RFAs for research on back / neck pain.

Reform Social Security Administration evaluation of Americans disabled by migraine and headache disorders

The Veterans Health Administration established 19 Headache Disorders Centers of Excellence to treat more than two million veterans living with migraine and other headache disorders. This number is expected to grow to 28 due to the AHDA’s continued advocacy. 

The Centers for Medicare and Medicaid (CMS) changed their policy to cover high-flow oxygen for patients with cluster headaches. 

The Social Security Administration issued its first-ever guidance around headache disorders in the Blue Book, the set of policies that determines who is eligible for Social Security Disability Insurance.