[Congressional Bills 119th Congress]
[From the U.S. Government Publishing Office]
[S. 494 Reported in Senate (RS)]
<DOC>
Calendar No. 526
119th CONGRESS
2d Session
S. 494
To establish a national plan to coordinate research on epilepsy, and
for other purposes.
_______________________________________________________________________
IN THE SENATE OF THE UNITED STATES
February 10, 2025
Mr. Schmitt (for himself, Ms. Klobuchar, Mr. Boozman, Ms. Hassan, Mr.
Husted, Mr. Markey, Mr. Booker, Ms. Ernst, Mr. Padilla, Mrs. Capito,
Mrs. Shaheen, Mr. Coons, Mr. Warnock, Mr. Kaine, Mr. Warner, Ms.
Alsobrooks, Mr. Heinrich, Mr. Schiff, Mrs. Gillibrand, Ms. Collins, Mr.
Justice, Ms. Blunt Rochester, Ms. Duckworth, Mr. Kennedy, Mr. Marshall,
Mr. Durbin, Ms. Rosen, and Mr. Bennet) introduced the following bill;
which was read twice and referred to the Committee on Health,
Education, Labor, and Pensions
July 28, 2026
Reported by Mr. Cassidy, with an amendment
[Strike out all after the enacting clause and insert the part printed
in italic]
_______________________________________________________________________
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,
<DELETED>SECTION 1. SHORT TITLE.</DELETED>
<DELETED> This Act may be cited as the ``National Plan for Epilepsy
Act''.</DELETED>
<DELETED>SEC. 2. FINDINGS.</DELETED>
<DELETED> Congress finds as follows:</DELETED>
<DELETED> (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.</DELETED>
<DELETED> (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.</DELETED>
<DELETED> (3) In approximately half of all cases of
epilepsy, the underlying cause of the disease is
unknown.</DELETED>
<DELETED> (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.</DELETED>
<DELETED> (5) Over 30 percent of people with epilepsy live
with uncontrolled seizures.</DELETED>
<DELETED> (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.</DELETED>
<DELETED> (7) Thirty-two percent of adults with epilepsy are
unable to work.</DELETED>
<DELETED> (8) Fifty-three percent of individuals with
uncontrolled seizures live in households earning less than
$25,000 per year.</DELETED>
<DELETED> (9) Health care costs associated with epilepsy and
seizures exceed $54,000,000,000 per year in the United
States.</DELETED>
<DELETED>SEC. 3. ESTABLISHING A NATIONAL PLAN FOR EPILEPSY.</DELETED>
<DELETED> 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:</DELETED>
<DELETED>``SEC. 320C. PROGRAMS RELATING TO EPILEPSY.</DELETED>
<DELETED> ``(a) National Plan for Epilepsy.--</DELETED>
<DELETED> ``(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.</DELETED>
<DELETED> ``(2) Activities.--In carrying out the National
Plan, the Secretary shall--</DELETED>
<DELETED> ``(A) establish, maintain, and
periodically update an integrated national plan to
prevent, diagnose, treat, and cure epilepsy;</DELETED>
<DELETED> ``(B) provide information, including an
estimate of the level of Federal investment in
preventing, diagnosing, treating, and curing
epilepsy;</DELETED>
<DELETED> ``(C) coordinate research and services
related to epilepsy, across all Federal
agencies;</DELETED>
<DELETED> ``(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;</DELETED>
<DELETED> ``(E) improve the--</DELETED>
<DELETED> ``(i) early diagnosis of epilepsy;
and</DELETED>
<DELETED> ``(ii) coordination of the care
and treatment of individuals living with
epilepsy;</DELETED>
<DELETED> ``(F) review the impact of epilepsy on the
physical, mental, and social health of individuals
living with epilepsy and their caregivers;</DELETED>
<DELETED> ``(G) solicit public comments and consider
consensus recommendations from collaborations in the
epilepsy community;</DELETED>
<DELETED> ``(H) carry out an annual assessment on
progress of the activities described in this
subsection;</DELETED>
<DELETED> ``(I) coordinate with international
bodies, to the degree possible, to integrate and inform
the global mission to prevent, diagnose, treat, and
cure epilepsy; and</DELETED>
<DELETED> ``(J) carry out other such activities as
the Secretary determines appropriate.</DELETED>
<DELETED> ``(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--</DELETED>
<DELETED> ``(1) recommendations for priority
actions;</DELETED>
<DELETED> ``(2) a description of the steps that have been,
or should be, taken to implement such recommendations;
and</DELETED>
<DELETED> ``(3) such other items as the Secretary determines
appropriate.</DELETED>
<DELETED> ``(c) Advisory Council.--</DELETED>
<DELETED> ``(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.</DELETED>
<DELETED> ``(2) Membership.--The Advisory Council shall be
comprised of--</DELETED>
<DELETED> ``(A) representatives appointed by the
Secretary from relevant Federal departments and
agencies, including--</DELETED>
<DELETED> ``(i) the National Institutes of
Health;</DELETED>
<DELETED> ``(ii) the Centers for Medicare &
Medicaid Services;</DELETED>
<DELETED> ``(iii) the Centers for Disease
Control and Prevention;</DELETED>
<DELETED> ``(iv) the Food and Drug
Administration;</DELETED>
<DELETED> ``(v) the Health Resources and
Services Administration;</DELETED>
<DELETED> ``(vi) the Department of Defense;
and</DELETED>
<DELETED> ``(vii) the Department of Veterans
Affairs; and</DELETED>
<DELETED> ``(B) expert non-Federal members appointed
by the Secretary that reflect the diversity of
epilepsy, including--</DELETED>
<DELETED> ``(i) 4 individuals, each of whom
is living with a different type of
epilepsy;</DELETED>
<DELETED> ``(ii) 2 family caregivers for
individuals with epilepsy;</DELETED>
<DELETED> ``(iii) 2 licensed or accredited
health care providers supported by a relevant
professional medical society, including at
least 1 epileptologist or
neurologist;</DELETED>
<DELETED> ``(iv) 2 biomedical researchers
with epilepsy-related expertise in basic,
translational, or clinical population science
or drug development science; and</DELETED>
<DELETED> ``(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.</DELETED>
<DELETED> ``(3) Meetings.--</DELETED>
<DELETED> ``(A) In general.--The Advisory Council
shall meet at least once each quarter.</DELETED>
<DELETED> ``(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.</DELETED>
<DELETED> ``(C) Public meetings.--All meetings of
the Advisory Council shall be open to the
public.</DELETED>
<DELETED> ``(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--
</DELETED>
<DELETED> ``(A) an evaluation of all federally
funded efforts in preventing, diagnosing, treating, and
curing epilepsy, and the outcomes of such
efforts;</DELETED>
<DELETED> ``(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;</DELETED>
<DELETED> ``(C) recommendations to--</DELETED>
<DELETED> ``(i) provide effective, timely,
and responsive diagnosis treatment and care to
improve health outcomes and quality of
life;</DELETED>
<DELETED> ``(ii) foster research and
innovation leading to more effective treatments
and potential cures for epilepsy;</DELETED>
<DELETED> ``(iii) strengthen data and
information systems including better
surveillance of epilepsy;</DELETED>
<DELETED> ``(iv) increase public awareness
about epilepsy and reduce stigma and
discrimination;</DELETED>
<DELETED> ``(v) increase access to expert
and specialized care for people with
epilepsy;</DELETED>
<DELETED> ``(vi) eliminate access to care
disparities experienced by individuals with
epilepsy;</DELETED>
<DELETED> ``(vii) prevent sudden unexpected
death in epilepsy and other epilepsy-related
mortalities;</DELETED>
<DELETED> ``(viii) reduce the financial
impact of epilepsy on families living with
epilepsy;</DELETED>
<DELETED> ``(ix) prevent epilepsy and
promote healthy behaviors; and</DELETED>
<DELETED> ``(x) an evaluation of the
implementation of the National Plan, and its
outcomes.</DELETED>
<DELETED> ``(d) Annual Reports.--The Secretary shall annually submit
to Congress a report that includes--</DELETED>
<DELETED> ``(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;</DELETED>
<DELETED> ``(2) recommendations for--</DELETED>
<DELETED> ``(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);</DELETED>
<DELETED> ``(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</DELETED>
<DELETED> ``(C) implementation steps to address
priority actions described in subparagraphs (A) and
(B); and</DELETED>
<DELETED> ``(3) a description of the progress made in
carrying out the National Plan.</DELETED>
<DELETED> ``(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).</DELETED>
<DELETED> ``(f) Sunset.--This section shall cease to be effective on
December 31, 2035.''.</DELETED>
SECTION 1. SHORT TITLE.
This Act may be cited as the ``National Plan for Epilepsy Act''.
SEC. 2. REVIEW TO IMPROVE EPILEPSY PROGRAMS, RESEARCH, PREVENTION, AND
CARE.
(a) In General.--The Secretary of Health and Human Services
(referred to in this section as the ``Secretary'') shall review and, as
necessary and appropriate, provide recommendations to Congress
regarding, and update existing Federal programs, activities, and
strategic plans related to, epilepsy research, prevention, early
identification, diagnosis, and treatment for purposes of identifying
and addressing knowledge gaps and improving health outcomes related to
epilepsy.
(b) Content.--The review under subsection (a) shall include--
(1) a review of findings from evidence-based research on
epilepsy, the status of ongoing, federally-funded research on
epilepsy, knowledge gaps related to epilepsy, and disparities
in populations with epilepsy;
(2) a review of Federal programs related to epilepsy
research, prevention, early identification, diagnosis, and
treatment, which shall include consideration of--
(A) gaps in, and opportunities for, coordination
among such programs;
(B) opportunities to inform global efforts to
prevent, diagnose, treat, and cure epilepsy, as
appropriate;
(C) near- and long-term goals of such programs to
improve research, prevention, early identification,
diagnosis, and treatment of epilepsy; and
(D) the level of Federal investment in preventing,
diagnosing, treating, and curing epilepsy;
(3) consideration of opportunities to--
(A) improve collaboration between Federal agencies
and relevant stakeholders to address gaps in programs,
research, and services;
(B) eliminate knowledge gaps in research on
epilepsy, including a review of the impact of epilepsy
on the health and well-being of individuals with
epilepsy and their caregivers;
(C) improve early diagnosis and coordination of the
care and treatment of individuals with epilepsy;
(D) better prevent sudden unexpected death in
epilepsy and other epilepsy-related mortalities;
(E) improve surveillance of epilepsy; and
(F) support the development of new 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; and
(4) a review of current public health strategies, and
consideration of additional evidence-based strategies, related
to epilepsy.
(c) External Input.--To inform the review under subsection (a), the
Secretary shall regularly convene and solicit input from other Federal
agencies, as appropriate, and relevant stakeholders, including patient
advocates and non-Federal subject matter experts.
(d) Report.--Not later than 2 years after the date of the enactment
of this Act, the Secretary shall submit to the Committee on Health,
Education, Labor, and Pensions of the Senate and the Committee on
Energy and Commerce of the House of Representatives a report on the
findings of the review conducted under subsection (a), including--
(1) a description of steps the Secretary took to solicit
stakeholder input pursuant to subsection (c) and a summary of
feedback received from, and needs identified by, such
stakeholders;
(2) recommendations to improve coordination and support of
Federal programs in order to better support people with
epilepsy, epilepsy research, and data collection, and proposals
for implementation of such recommendations, as appropriate; and
(3) any changes to Federal programs, activities, or
strategic plans recommended by the Secretary based on the
review, and any statutory or other barriers that impede
implementation of such changes.
Calendar No. 526
119th CONGRESS
2d Session
S. 494
_______________________________________________________________________
A BILL
To establish a national plan to coordinate research on epilepsy, and
for other purposes.
_______________________________________________________________________
July 28, 2026
Reported with an amendment