II
119THCONGRESS
1
STSESSION S. 494
To establish a national plan to coordinate research on epilepsy, and for
other purposes.
IN THE SENATE OF THE UNITED STATES
FEBRUARY10, 2025
Mr. S
CHMITT(for himself, Ms. KLOBUCHAR, Mr. BOOZMAN, and Ms. HAS-
SAN) introduced the following bill; which was read twice and referred to
the Committee on Health, Education, Labor, and Pensions
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 Representa-1
tives of the United States of America in Congress assembled, 2
SECTION 1. SHORT TITLE. 3
This Act may be cited as the ‘‘National Plan for Epi-4
lepsy Act’’. 5
SEC. 2. FINDINGS. 6
Congress finds as follows: 7
(1) Epilepsy is a brain disorder that causes re-8
curring and unprovoked seizures and affects people 9
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of all ages, affecting nearly 3,000,000 adults and 1
456,000 children in the United States. 2
(2) Epilepsy and seizures can develop in any 3
person at any age. One in 26 people will develop a 4
form of epilepsy in their lifetime, with people from 5
all demographic groups and walks of life being im-6
pacted. 7
(3) In approximately half of all cases of epi-8
lepsy, the underlying cause of the disease is un-9
known. 10
(4) Epilepsy is a spectrum disease comprised of 11
many diagnoses and an ever-growing number of rare 12
epilepsies. There are many different types of sei-13
zures and varying levels of seizure control. 14
(5) Over 30 percent of people with epilepsy live 15
with uncontrolled seizures. 16
(6) Individuals with epilepsy have a 3-times 17
higher risk of early death than the general popu-18
lation and that risk is even higher for individuals 19
with uncontrolled seizures. 20
(7) Thirty-two percent of adults with epilepsy 21
are unable to work. 22
(8) Fifty-three percent of individuals with un-23
controlled seizures live in households earning less 24
than $25,000 per year. 25
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(9) Health care costs associated with epilepsy 1
and seizures exceed $54,000,000,000 per year in the 2
United States. 3
SEC. 3. ESTABLISHING A NATIONAL PLAN FOR EPILEPSY. 4
Part B of title III of the Public Health Service Act 5
(42 U.S.C. 243 et seq.) is amended by adding at the end 6
the following: 7
‘‘SEC. 320C. PROGRAMS RELATING TO EPILEPSY. 8
‘‘(a) N
ATIONALPLAN FOREPILEPSY.— 9
‘‘(1) I
N GENERAL.—The Secretary shall carry 10
out a national project, to be known as the ‘National 11
Plan for Epilepsy’ (referred to in this section as the 12
‘National Plan’), to prevent, diagnose, treat, and 13
cure epilepsy. 14
‘‘(2) A
CTIVITIES.—In carrying out the National 15
Plan, the Secretary shall— 16
‘‘(A) establish, maintain, and periodically 17
update an integrated national plan to prevent, 18
diagnose, treat, and cure epilepsy; 19
‘‘(B) provide information, including an es-20
timate of the level of Federal investment in pre-21
venting, diagnosing, treating, and curing epi-22
lepsy; 23
‘‘(C) coordinate research and services re-24
lated to epilepsy, across all Federal agencies; 25
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‘‘(D) encourage the development of safe 1
and effective treatments, strategies, and other 2
approaches to prevent, diagnose, treat, and cure 3
epilepsy or to enhance functioning and improve 4
quality of life for individuals with epilepsy and 5
their caregivers; 6
‘‘(E) improve the— 7
‘‘(i) early diagnosis of epilepsy; and 8
‘‘(ii) coordination of the care and 9
treatment of individuals living with epi-10
lepsy; 11
‘‘(F) review the impact of epilepsy on the 12
physical, mental, and social health of individ-13
uals living with epilepsy and their caregivers; 14
‘‘(G) solicit public comments and consider 15
consensus recommendations from collaborations 16
in the epilepsy community; 17
‘‘(H) carry out an annual assessment on 18
progress of the activities described in this sub-19
section; 20
‘‘(I) coordinate with international bodies, 21
to the degree possible, to integrate and inform 22
the global mission to prevent, diagnose, treat, 23
and cure epilepsy; and 24
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‘‘(J) carry out other such activities as the 1
Secretary determines appropriate. 2
‘‘(b) A
NNUALASSESSMENT.—Not later than 2 years 3
after the date of enactment of the National Plan for Epi-4
lepsy Act, and annually thereafter, the Secretary shall 5
carry out an assessment of the Nation’s progress in pre-6
paring for and responding to the escalating burden of epi-7
lepsy. Such assessment shall include— 8
‘‘(1) recommendations for priority actions; 9
‘‘(2) a description of the steps that have been, 10
or should be, taken to implement such recommenda-11
tions; and 12
‘‘(3) such other items as the Secretary deter-13
mines appropriate. 14
‘‘(c) A
DVISORYCOUNCIL.— 15
‘‘(1) I
N GENERAL.—The Secretary shall estab-16
lish and maintain an Advisory Council on Epilepsy 17
Research, Care, and Services (referred to in this sec-18
tion as the ‘Advisory Council’) to advise the Sec-19
retary on epilepsy-related issues. 20
‘‘(2) M
EMBERSHIP.—The Advisory Council 21
shall be comprised of— 22
‘‘(A) representatives appointed by the Sec-23
retary from relevant Federal departments and 24
agencies, including— 25
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‘‘(i) the National Institutes of Health; 1
‘‘(ii) the Centers for Medicare & Med-2
icaid Services; 3
‘‘(iii) the Centers for Disease Control 4
and Prevention; 5
‘‘(iv) the Food and Drug Administra-6
tion; 7
‘‘(v) the Health Resources and Serv-8
ices Administration; 9
‘‘(vi) the Department of Defense; and 10
‘‘(vii) the Department of Veterans Af-11
fairs; and 12
‘‘(B) expert non-Federal members ap-13
pointed by the Secretary that reflect the diver-14
sity of epilepsy, including— 15
‘‘(i) 4 individuals, each of whom is liv-16
ing with a different type of epilepsy; 17
‘‘(ii) 2 family caregivers for individ-18
uals with epilepsy; 19
‘‘(iii) 2 licensed or accredited health 20
care providers supported by a relevant pro-21
fessional medical society, including at least 22
1 epileptologist or neurologist; 23
‘‘(iv) 2 biomedical researchers with 24
epilepsy-related expertise in basic, 25
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translational, or clinical population science 1
or drug development science; and 2
‘‘(v) 3 representatives from 3 separate 3
nonprofit organizations directly connected 4
with epilepsy that have demonstrated expe-5
rience in epilepsy research or epilepsy pa-6
tient care and other services. 7
‘‘(3) M
EETINGS.— 8
‘‘(A) I
N GENERAL.—The Advisory Council 9
shall meet at least once each quarter. 10
‘‘(B) M
EETINGS WITH OTHER EXPERTS .— 11
Not later than 2 years after the date of enact-12
ment of the National Plan for Epilepsy Act, 13
and every 2 years thereafter, the Advisory 14
Council shall convene a meeting of Federal and 15
non-Federal organizations to discuss epilepsy 16
research. 17
‘‘(C) P
UBLIC MEETINGS.—All meetings of 18
the Advisory Council shall be open to the pub-19
lic. 20
‘‘(4) R
EPORTING.—Not later than 18 months 21
after the date of enactment of the National Plan for 22
Epilepsy Act, and every 2 years thereafter, the Advi-23
sory Council shall provide to the Secretary and Con-24
gress a report containing— 25
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‘‘(A) an evaluation of all federally funded 1
efforts in preventing, diagnosing, treating, and 2
curing epilepsy, and the outcomes of such ef-3
forts; 4
‘‘(B) recommendations for priority actions 5
to better coordinate, expand, and better support 6
Federal programs in order to better support 7
people with epilepsy, epilepsy research, and 8
data collection; 9
‘‘(C) recommendations to— 10
‘‘(i) provide effective, timely, and re-11
sponsive diagnosis treatment and care to 12
improve health outcomes and quality of 13
life; 14
‘‘(ii) foster research and innovation 15
leading to more effective treatments and 16
potential cures for epilepsy; 17
‘‘(iii) strengthen data and information 18
systems including better surveillance of 19
epilepsy; 20
‘‘(iv) increase public awareness about 21
epilepsy and reduce stigma and discrimina-22
tion; 23
‘‘(v) increase access to expert and spe-24
cialized care for people with epilepsy; 25
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‘‘(vi) eliminate access to care dispari-1
ties experienced by individuals with epi-2
lepsy; 3
‘‘(vii) prevent sudden unexpected 4
death in epilepsy and other epilepsy-related 5
mortalities; 6
‘‘(viii) reduce the financial impact of 7
epilepsy on families living with epilepsy; 8
‘‘(ix) prevent epilepsy and promote 9
healthy behaviors; and 10
‘‘(x) an evaluation of the implementa-11
tion of the National Plan, and its out-12
comes. 13
‘‘(d) A
NNUALREPORTS.—The Secretary shall annu-14
ally submit to Congress a report that includes— 15
‘‘(1) an evaluation of all federally funded efforts 16
in epilepsy research, prevention, diagnosis, treat-17
ment, clinical care, and institutional-, home-, and 18
community-based programs, and the outcomes of 19
such efforts; 20
‘‘(2) recommendations for— 21
‘‘(A) priority actions based on the most re-22
cent assessment submitted by the Secretary 23
under subsection (b) and the recommendations 24
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contained in the most recent report of the Advi-1
sory Council under subsection (c)(4); 2
‘‘(B) priority actions to improve all feder-3
ally funded efforts in epilepsy research, preven-4
tion, diagnosis, treatment, clinical care, and in-5
stitutional-, home-, and community-based pro-6
grams; and 7
‘‘(C) implementation steps to address pri-8
ority actions described in subparagraphs (A) 9
and (B); and 10
‘‘(3) a description of the progress made in car-11
rying out the National Plan. 12
‘‘(e) D
ATASHARING.—Agencies both within the De-13
partment of Health and Human Services and outside of 14
such Department that have data relating to epilepsy shall 15
share such data with the Secretary as necessary to enable 16
the Secretary to complete the reports described in sub-17
section (d). 18
‘‘(f) S
UNSET.—This section shall cease to be effective 19
on December 31, 2035.’’. 20
Æ
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