[Congressional Bills 119th Congress]
[From the U.S. Government Publishing Office]
[H.R. 1189 Introduced in House (IH)]
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119th CONGRESS
1st Session
H. R. 1189
To establish a national plan to coordinate research on epilepsy, and
for other purposes.
_______________________________________________________________________
IN THE HOUSE OF REPRESENTATIVES
February 11, 2025
Mr. Costa (for himself and Mr. Murphy) introduced the following bill;
which was referred to the Committee on Energy and Commerce
_______________________________________________________________________
A BILL
To establish a national plan to coordinate research on epilepsy, 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 ``National Plan for Epilepsy Act''.
SEC. 2. FINDINGS.
Congress finds as follows:
(1) Epilepsy is a brain disorder that causes recurring and
unprovoked seizures and affects people of all ages, affecting
nearly 3,000,000 adults and 456,000 children in the United
States.
(2) Epilepsy and seizures can develop in any person at any
age. One in 26 people will develop a form of epilepsy in their
lifetime, with people from all demographic groups and walks of
life being impacted.
(3) In approximately half of all cases of epilepsy, the
underlying cause of the disease is unknown.
(4) Epilepsy is a spectrum disease comprised of many
diagnoses and an ever-growing number of rare epilepsies. There
are many different types of seizures and varying levels of
seizure control.
(5) Over 30 percent of people with epilepsy live with
uncontrolled seizures.
(6) Individuals with epilepsy have a 3-times higher risk of
early death than the general population and that risk is even
higher for individuals with uncontrolled seizures.
(7) Thirty-two percent of adults with epilepsy are unable
to work.
(8) Fifty-three percent of individuals with uncontrolled
seizures live in households earning less than $25,000 per year.
(9) Health care costs associated with epilepsy and seizures
exceed $54,000,000,000 per year in the United States.
SEC. 3. ESTABLISHING A NATIONAL PLAN FOR EPILEPSY.
Part B of title III of the Public Health Service Act (42 U.S.C. 243
et seq.) is amended by adding at the end the following:
``SEC. 320C. PROGRAMS RELATING TO EPILEPSY.
``(a) National Plan for Epilepsy.--
``(1) In general.--The Secretary shall carry out a national
project, to be known as the `National Plan for Epilepsy'
(referred to in this section as the `National Plan'), to
prevent, diagnose, treat, and cure epilepsy.
``(2) Activities.--In carrying out the National Plan, the
Secretary shall--
``(A) establish, maintain, and periodically update
an integrated national plan to prevent, diagnose,
treat, and cure epilepsy;
``(B) provide information, including an estimate of
the level of Federal investment in preventing,
diagnosing, treating, and curing epilepsy;
``(C) coordinate research and services related to
epilepsy, across all Federal agencies;
``(D) encourage the development of safe and
effective treatments, strategies, and other approaches
to prevent, diagnose, treat, and cure epilepsy or to
enhance functioning and improve quality of life for
individuals with epilepsy and their caregivers;
``(E) improve the--
``(i) early diagnosis of epilepsy; and
``(ii) coordination of the care and
treatment of individuals living with epilepsy;
``(F) review the impact of epilepsy on the
physical, mental, and social health of individuals
living with epilepsy and their caregivers;
``(G) solicit public comments and consider
consensus recommendations from collaborations in the
epilepsy community;
``(H) carry out an annual assessment on progress of
the activities described in this subsection;
``(I) coordinate with international bodies, to the
degree possible, to integrate and inform the global
mission to prevent, diagnose, treat, and cure epilepsy;
and
``(J) carry out other such activities as the
Secretary determines appropriate.
``(b) Annual Assessment.--Not later than 2 years after the date of
enactment of the National Plan for Epilepsy Act, and annually
thereafter, the Secretary shall carry out an assessment of the Nation's
progress in preparing for and responding to the escalating burden of
epilepsy. Such assessment shall include--
``(1) recommendations for priority actions;
``(2) a description of the steps that have been, or should
be, taken to implement such recommendations; and
``(3) such other items as the Secretary determines
appropriate.
``(c) Advisory Council.--
``(1) In general.--The Secretary shall establish and
maintain an Advisory Council on Epilepsy Research, Care, and
Services (referred to in this section as the `Advisory
Council') to advise the Secretary on epilepsy-related issues.
``(2) Membership.--The Advisory Council shall be comprised
of--
``(A) representatives appointed by the Secretary
from relevant Federal departments and agencies,
including--
``(i) the National Institutes of Health;
``(ii) the Centers for Medicare & Medicaid
Services;
``(iii) the Centers for Disease Control and
Prevention;
``(iv) the Food and Drug Administration;
``(v) the Health Resources and Services
Administration;
``(vi) the Department of Defense; and
``(vii) the Department of Veterans Affairs;
and
``(B) expert non-Federal members appointed by the
Secretary that reflect the diversity of epilepsy,
including--
``(i) 4 individuals, each of whom is living
with a different type of epilepsy;
``(ii) 2 family caregivers for individuals
with epilepsy;
``(iii) 2 licensed or accredited health
care providers supported by a relevant
professional medical society, including at
least 1 epileptologist or neurologist;
``(iv) 2 biomedical researchers with
epilepsy-related expertise in basic,
translational, or clinical population science
or drug development science; and
``(v) 3 representatives from 3 separate
nonprofit organizations directly connected with
epilepsy that have demonstrated experience in
epilepsy research or epilepsy patient care and
other services.
``(3) Meetings.--
``(A) In general.--The Advisory Council shall meet
at least once each quarter.
``(B) Meetings with other experts.--Not later than
2 years after the date of enactment of the National
Plan for Epilepsy Act, and every 2 years thereafter,
the Advisory Council shall convene a meeting of Federal
and non-Federal organizations to discuss epilepsy
research.
``(C) Public meetings.--All meetings of the
Advisory Council shall be open to the public.
``(4) Reporting.--Not later than 18 months after the date
of enactment of the National Plan for Epilepsy Act, and every 2
years thereafter, the Advisory Council shall provide to the
Secretary and Congress a report containing--
``(A) an evaluation of all federally funded efforts
in preventing, diagnosing, treating, and curing
epilepsy, and the outcomes of such efforts;
``(B) recommendations for priority actions to
better coordinate, expand, and better support Federal
programs in order to better support people with
epilepsy, epilepsy research, and data collection; and
``(C) recommendations to--
``(i) provide effective, timely, and
responsive diagnosis treatment and care to
improve health outcomes and quality of life;
``(ii) foster research and innovation
leading to more effective treatments and
potential cures for epilepsy;
``(iii) strengthen data and information
systems including better surveillance of
epilepsy;
``(iv) increase public awareness about
epilepsy and reduce stigma and discrimination;
``(v) increase access to expert and
specialized care for people with epilepsy;
``(vi) eliminate access to care disparities
experienced by individuals with epilepsy;
``(vii) prevent sudden unexpected death in
epilepsy and other epilepsy-related
mortalities;
``(viii) reduce the financial impact of
epilepsy on families living with epilepsy;
``(ix) prevent epilepsy and promote healthy
behaviors; and
``(x) an evaluation of the implementation
of the National Plan, and its outcomes.
``(d) Annual Reports.--The Secretary shall annually submit to
Congress a report that includes--
``(1) an evaluation of all federally funded efforts in
epilepsy research, prevention, diagnosis, treatment, clinical
care, and institutional-, home-, and community-based programs,
and the outcomes of such efforts;
``(2) recommendations for--
``(A) priority actions based on the most recent
assessment submitted by the Secretary under subsection
(b) and the recommendations contained in the most
recent report of the Advisory Council under subsection
(c)(4);
``(B) priority actions to improve all federally
funded efforts in epilepsy research, prevention,
diagnosis, treatment, clinical care, and institutional-
, home-, and community-based programs; and
``(C) implementation steps to address priority
actions described in subparagraphs (A) and (B); and
``(3) a description of the progress made in carrying out
the National Plan.
``(e) Data Sharing.--Agencies both within the Department of Health
and Human Services and outside of such Department that have data
relating to epilepsy shall share such data with the Secretary as
necessary to enable the Secretary to complete the reports described in
subsection (d).
``(f) Sunset.--This section shall cease to be effective on December
31, 2035.''.
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