H.R. 5536 (Introduced in House) — Headache Education, Access, Diagnosis, and Care Health Equity Act

Section 1 Short title

This Act may be cited as the “Headache Education, Access, Diagnosis, and Care Health Equity Act” or the “HEADACHE Act”.

Sec. 2 Definition

In this Act:

(1)

Headache disorder—

(A)

In general— The term “headache disorder” means a primary or secondary medical condition for which headache is a principal symptom.

(B)

Inclusion of certain medical conditions— The medical conditions referred to in subparagraph (A) include migraine, cluster headache, tension-type headache, spinal cerebrospinal fluid (CSF) leak, idiopathic intracranial hypertension, new daily persistent headache, headache secondary to long COVID, orofacial pain disorders, post-traumatic headache secondary to traumatic brain injury, and headache disorders affecting vulnerable populations such as children, pregnant women, and older adults.

(2)

Secretary— The term “Secretary” means the Secretary of Health and Human Services, except as otherwise specifically provided.

Sec. 3 National Headache Disorders Initiative

(a)

In general— The Secretary shall carry out an initiative, to be known as the National Headache Disorders Initiative (in this section referred to as the “NHDI”), in accordance with the requirements of this section.

(b)

Components— In carrying out the NHDI, the Secretary shall—

(1)

establish and implement a comprehensive program to address the medical, societal, and economic impacts of headache disorders;

(2)

take such actions as may be necessary to increase the clinical and research workforce focused on the care of patients with headache disorders;

(3)

coordinate with other Federal initiatives with missions that overlap with NHDI, including the Helping End Addiction Long-Term (HEAL) Initiative, the NIH Pain Consortium, the Interagency Pain Research Coordinating Committee, and the Centers of Excellence in Pain Education;

(4)

ensure that Federal resources available to support headache disorders research and services across all agencies are commensurate with the high disease burden exacted by these conditions;

(5)

ensure prioritization of fundamental, translational, and clinical research to improve the speed, accuracy, and cost of diagnosis of headache disorders, and the development of innovative therapeutics to prevent and ameliorate the symptoms of headache disorders;

(6)

improve protocols for the diagnosis and the coordination of care of headache disorders, including care pathways that address comorbid medical conditions;

(7)

enhance the epidemiological database of headache disorders to ensure comprehensive and inclusive data collection that improves clinical care, research, and public health efforts while addressing disparities in diagnosis, treatment, and access to care;

(8)

enhance social research of headache disorders and coordinate public awareness campaigns to reduce stigma associated with such disorders; and

(9)

coordinate with international bodies to integrate and inform global efforts surrounding headache disorders.

(c)

Duties— The Secretary shall—

(1)

oversee the establishment and updating of the NHDI; and

(2)

evaluate all Federal programs related to headache disorders, including budget requests and approvals.

Sec. 4 Advisory Council on Headache Disorders Research, Care, and Services

(a)

Establishment— The Secretary shall establish and maintain an Advisory Council on Headache Disorders Research, Care, and Services (referred to in this section as the “Advisory Council”) for the purpose of advising the Secretary on matters relating to headache disorders.

(b)

Membership—

(1)

Federal members— The Advisory Council shall be comprised of experts, to be appointed by the Secretary, who collectively are from various backgrounds and perspectives, including at least one member from each of the following:

(A)

The National Institutes of Health.

(B)

The Office of Research on Women’s Health.

(C)

The Food and Drug Administration.

(D)

The Centers for Medicare & Medicaid Services.

(E)

The Indian Health Service.

(F)

The Department of Veterans Affairs.

(G)

The Department of Defense.

(H)

The Centers for Disease Control and Prevention.

(I)

The Agency for Healthcare Research and Quality.

(J)

The Patient-Centered Outcomes Research Institute.

(K)

The Advanced Research Projects Agency for Health.

(L)

The National Center for Complementary and Integrative Health.

(M)

The Department of Education.

(N)

Other Federal departments and agencies.

(2)

Non-Federal members— In addition to the members specified in paragraph (1), the Advisory Council shall include 12 members, to be appointed by the Secretary, who shall include representatives of minority communities, communities disproportionately affected by headache disorders, and communities underrepresented in headache disorders research, who shall each be from outside the Federal Government, and who shall include the following:

(A)

Two individuals who are patient advocates, including one individual who is living with migraine and one individual with a non-migraine headache disorder.

(B)

An individual who is a caregiver of a child or adolescent with a headache disorder.

(C)

Individuals who are healthcare providers specializing in headache (those with a patient base where greater than 80 percent are headache patients), including—

(i)

at least one individual who is Doctor of Medicine or Doctor of Osteopathic Medicine;

(ii)

at least one individual who is an Advanced Practice Provider;

(iii)

at least one individual who is a behavioral health specialist;

(iv)

at least one individual who is an orofacial pain specialist;

(v)

at least one individual who is a front-line provider (such as a primary care physician or emergency care provider); and

(vi)

at least one individual who is a researcher with expertise in headache disorders.

(D)

At least one individual who is a representative of a non-profit patient advocacy organization focused exclusively on headache disorders.

(c)

Meetings—

(1)

Frequency— The Advisory Council shall meet—

(A)

at least once each quarter during the 2-year period beginning on the date on which the Advisory Council is established; and

(B)

at the Secretary’s discretion after the expiration of such period.

(2)

Annual research meeting— Not later than two years after the date of enactment of this Act, and every year thereafter, the Advisory Council shall convene a meeting of Federal and non-Federal organizations to discuss headache disorders research.

(d)

Termination— The Advisory Council shall terminate on the sunset date specified in section 7.

Sec. 5 Data sharing

(a)

In general— The heads of Federal agencies, within and outside the Department of Health and Human Services, that have data relating to headache disorders shall, at the request of the Secretary, share such data with the Secretary to enable the Secretary to complete the report required under section 6.

(b)

Included data— The data-sharing requirement under subsection (a) includes standardized data collection across agencies and integration with non-Federal sources, such as electronic health records, patient registries, and population health surveys.

Sec. 6 Annual report to Congress

(a)

In general— The Secretary shall submit to Congress an annual report containing information relating to headache disorders, as specified in subsection (b).

(b)

Contents— The annual report shall include the following:

(1)

An evaluation of all federally funded efforts relating to headache disorders research, clinical care, and other treatment programs and their outcomes.

(2)

An evaluation of program performance, mission, and purpose, including data on headache disparities across racial, ethnic, socioeconomic, and geographic lines.

(3)

Recommendations for priority actions, including—

(A)

reducing the financial impact of headache disorders on Medicare and other federally funded programs;

(B)

improving health outcomes by updating diagnostic protocols, improving access to care, and advancing therapeutic research; and

(C)

strategies to increase public awareness and reduce stigma.

(4)

An annually updated national plan that addresses both short-term and long-term objectives for addressing headache disorders.

Sec. 7 Sunset date

This Act shall cease to be effective on the date that is 5 years after the date of enactment of this Act.

Headache Education, Access, Diagnosis, and Care Health Equity Act