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[Congressional Bills 119th Congress]
[From the U.S. Government Publishing Office]
[H.R. 5536 Introduced in House (IH)]
<DOC>
119th CONGRESS
1st Session
H. R. 5536
To direct the Secretary of Health and Human Services to carry out a
National Headache Disorders Initiative, to establish an Advisory
Council on Headache Disorders Research, Care, and Services, and for
other purposes.
_______________________________________________________________________
IN THE HOUSE OF REPRESENTATIVES
September 19, 2025
Mrs. Trahan (for herself, Ms. Budzinski, Mr. Moulton, Ms. Kelly of
Illinois, and Mrs. Foushee) introduced the following bill; which was
referred to the Committee on Energy and Commerce
_______________________________________________________________________
A BILL
To direct the Secretary of Health and Human Services to carry out a
National Headache Disorders Initiative, to establish an Advisory
Council on Headache Disorders Research, Care, and Services, and for
other purposes.
Be it enacted by the Senate and House of Representatives of the
United States of America in Congress assembled,
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.
<all>
Introduced in House
Introduced in House
Referred to the House Committee on Energy and Commerce.
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