II 

118TH CONGRESS 

2D SESSION S. 5353 

To establish a national plan to coordinate research on epilepsy, and for 

other purposes. 

IN THE SENATE OF THE UNITED STATES 

NOVEMBER 20, 2024 

Mr. SCHMITT (for himself and Ms. KLOBUCHAR) 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. 

1 Be it enacted by the Senate and House of Representa2 tives of the United States of America in Congress assembled, 

3 SECTION 1. SHORT TITLE. 

4 This Act may be cited as the ‘‘National Plan for Epi5 lepsy Act’’. 

6 SEC. 2. FINDINGS. 

7 Congress finds as follows: 

8 (1) Epilepsy is a brain disorder that causes re9 curring and unprovoked seizures and affects people 


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1 of all ages, affecting nearly 3,000,000 adults and 

2 456,000 children in the United States. 

3 (2) Epilepsy and seizures can develop in any 

4 person at any age. One in 26 people will develop a 

5 form of epilepsy in their lifetime, with people from 

6 all demographic groups and walks of life being im7 pacted. 

8 (3) In approximately half of all cases of epi9 lepsy, the underlying cause of the disease is un10 known. 

11 (4) Epilepsy is a spectrum disease comprised of 

12 many diagnoses and an ever-growing number of rare 

13 epilepsies. There are many different types of sei14 zures and varying levels of seizure control. 

15 (5) Over 30 percent of people with epilepsy live 

16 with uncontrolled seizures. 

17 (6) Individuals with epilepsy have a 3-times 

18 higher risk of early death than the general popu19 lation and that risk is even higher for individuals 

20 with uncontrolled seizures. 

21 (7) Thirty-two percent of adults with epilepsy 

22 are unable to work. 

23 (8) Fifty-three percent of individuals with un24 controlled seizures live in households earning less 

25 than $25,000 per year. 


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1 (9) Health care costs associated with epilepsy 

2 and seizures exceed $54,000,000,000 per year in the 

3 United States. 

4 SEC. 3. ESTABLISHING A NATIONAL PLAN FOR EPILEPSY. 

5 Part B of title III of the Public Health Service Act 

6 (42 U.S.C. 243 et seq.) is amended by adding at the end 

7 the following: 

8 ‘‘SEC. 320C. PROGRAMS RELATING TO EPILEPSY. 

9 ‘‘(a) NATIONAL PLAN FOR EPILEPSY.— 

10 ‘‘(1) IN GENERAL.—The Secretary shall carry 

11 out a national project, to be known as the ‘National 

12 Plan for Epilepsy’ (referred to in this section as the 

13 ‘National Plan’), to prevent, diagnose, treat, and 

14 cure epilepsy. 

15 ‘‘(2) ACTIVITIES.—In carrying out the National 

16 Plan, the Secretary shall— 

17 ‘‘(A) establish, maintain, and periodically 

18 update an integrated national plan to prevent, 

19 diagnose, treat, and cure epilepsy; 

20 ‘‘(B) provide information, including an es21 timate of the level of Federal investment in pre22 venting, diagnosing, treating, and curing epi23 lepsy; 

24 ‘‘(C) coordinate research and services re25 lated to epilepsy, across all Federal agencies; 


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1 ‘‘(D) encourage the development of safe 

2 and effective treatments, strategies, and other 

3 approaches to prevent, diagnose, treat, and cure 

4 epilepsy or to enhance functioning and improve 

5 quality of life for individuals with epilepsy and 

6 their caregivers; 

7 ‘‘(E) improve the— 

8 ‘‘(i) early diagnosis of epilepsy; and 

9 ‘‘(ii) coordination of the care and 

10 treatment of individuals living with epi11 lepsy; 

12 ‘‘(F) review the impact of epilepsy on the 

13 physical, mental, and social health of individ14 uals living with epilepsy and their caregivers; 

15 ‘‘(G) solicit public comments and consider 

16 consensus recommendations from collaborations 

17 in the epilepsy community; 

18 ‘‘(H) carry out an annual assessment on 

19 progress of the activities described in this sub20 section; 

21 ‘‘(I) coordinate with international bodies, 

22 to the degree possible, to integrate and inform 

23 the global mission to prevent, diagnose, treat, 

24 and cure epilepsy; and 


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1 ‘‘(J) carry out other such activities as the 

2 Secretary determines appropriate. 

3 ‘‘(b) ANNUAL ASSESSMENT.—Not later than 2 years 

4 after the date of enactment of the National Plan for Epi5 lepsy Act, and annually thereafter, the Secretary shall 

6 carry out an assessment of the Nation’s progress in pre7 paring for and responding to the escalating burden of epi8 lepsy. Such assessment shall include— 

9 ‘‘(1) recommendations for priority actions; 

10 ‘‘(2) a description of the steps that have been, 

11 or should be, taken to implement such recommenda12 tions; and 

13 ‘‘(3) such other items as the Secretary deter14 mines appropriate. 

15 ‘‘(c) ADVISORY COUNCIL.— 

16 ‘‘(1) IN GENERAL.—The Secretary shall estab17 lish and maintain an Advisory Council on Epilepsy 

18 Research, Care, and Services (referred to in this sec19 tion as the ‘Advisory Council’) to advise the Sec20 retary on epilepsy-related issues. 

21 ‘‘(2) MEMBERSHIP.—The Advisory Council 

22 shall be comprised of— 

23 ‘‘(A) representatives appointed by the Sec24 retary from relevant Federal departments and 

25 agencies, including— 


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1 ‘‘(i) the National Institutes of Health; 

2 ‘‘(ii) the Centers for Medicare & Med3 icaid Services; 

4 ‘‘(iii) the Centers for Disease Control 

5 and Prevention; 

6 ‘‘(iv) the Food and Drug Administra7 tion; 

8 ‘‘(v) the Health Resources and Serv9 ices Administration; 

10 ‘‘(vi) the Department of Defense; and 

11 ‘‘(vii) the Department of Veterans Af12 fairs; and 

13 ‘‘(B) expert non-Federal members ap14 pointed by the Secretary that reflect the diver15 sity of epilepsy, including— 

16 ‘‘(i) 4 individuals, each of whom is liv17 ing with a different type of epilepsy; 

18 ‘‘(ii) 2 family caregivers for individ19 uals with epilepsy; 

20 ‘‘(iii) 2 licensed or accredited health 

21 care providers supported by a relevant pro22 fessional medical society, including at least 

23 1 epileptologist or neurologist; 

24 ‘‘(iv) 2 biomedical researchers with 

25 epilepsy-related expertise in basic, 


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1 translational, or clinical population science 

2 or drug development science; and 

3 ‘‘(v) 3 representatives from 3 separate 

4 nonprofit organizations directly connected 

5 with epilepsy that have demonstrated expe6 rience in epilepsy research or epilepsy pa7 tient care and other services. 

8 ‘‘(3) MEETINGS.— 

9 ‘‘(A) IN GENERAL.—The Advisory Council 

10 shall meet at least once each quarter. 

11 ‘‘(B) MEETINGS WITH OTHER EXPERTS.— 

12 Not later than 2 years after the date of enact13 ment of the National Plan for Epilepsy Act, 

14 and every 2 years thereafter, the Advisory 

15 Council shall convene a meeting of Federal and 

16 non-Federal organizations to discuss epilepsy 

17 research. 

18 ‘‘(C) PUBLIC MEETINGS.—All meetings of 

19 the Advisory Council shall be open to the pub20 lic. 

21 ‘‘(4) REPORTING.—Not later than 18 months 

22 after the date of enactment of the National Plan for 

23 Epilepsy Act, and every 2 years thereafter, the Advi24 sory Council shall provide to the Secretary and Con25 gress a report containing— 


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1 ‘‘(A) an evaluation of all federally funded 

2 efforts in preventing, diagnosing, treating, and 

3 curing epilepsy, and the outcomes of such ef4 forts; 

5 ‘‘(B) recommendations for priority actions 

6 to better coordinate, expand, and better support 

7 Federal programs in order to better support 

8 people with epilepsy, epilepsy research, and 

9 data collection; 

10 ‘‘(C) recommendations to— 

11 ‘‘(i) provide effective, timely, and re12 sponsive diagnosis treatment and care to 

13 improve health outcomes and quality of 

14 life; 

15 ‘‘(ii) foster research and innovation 

16 leading to more effective treatments and 

17 potential cures for epilepsy; 

18 ‘‘(iii) strengthen data and information 

19 systems including better surveillance of 

20 epilepsy; 

21 ‘‘(iv) increase public awareness about 

22 epilepsy and reduce stigma and discrimina23 tion; 

24 ‘‘(v) increase access to expert and spe25 cialized care for people with epilepsy; 


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1 ‘‘(vi) eliminate access to care dispari2 ties experienced by individuals with epi3 lepsy; 

4 ‘‘(vii) prevent sudden unexpected 

5 death in epilepsy and other epilepsy-related 

6 mortalities; 

7 ‘‘(viii) reduce the financial impact of 

8 epilepsy on families living with epilepsy; 

9 ‘‘(ix) prevent epilepsy and promote 

10 healthy behaviors; and 

11 ‘‘(x) an evaluation of the implementa12 tion of the National Plan, and its out13 comes. 

14 ‘‘(d) ANNUAL REPORTS.—The Secretary shall annu15 ally submit to Congress a report that includes— 

16 ‘‘(1) an evaluation of all federally-funded efforts 

17 in epilepsy research, prevention, diagnosis, treat18 ment, clinical care, and institutional-, home-, and 

19 community-based programs, and the outcomes of 

20 such efforts; 

21 ‘‘(2) recommendations for— 

22 ‘‘(A) priority actions based on the most re23 cent assessment submitted by the Secretary 

24 under subsection (b) and the recommendations 


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1 contained in the most recent report of the Advi2 sory Council under subsection (c)(4); 

3 ‘‘(B) priority actions to improve all feder4 ally-funded efforts in epilepsy research, preven5 tion, diagnosis, treatment, clinical care, and in6 stitutional-, home-, and community-based pro7 grams; and 

8 ‘‘(C) implementation steps to address pri9 ority actions described in subparagraphs (A) 

10 and (B); and 

11 ‘‘(3) a description of the progress made in car12 rying out the National Plan. 

13 ‘‘(e) DATA SHARING.—Agencies both within the De14 partment of Health and Human Services and outside of 

15 such Department that have data relating to epilepsy shall 

16 share such data with the Secretary as necessary to enable 

17 the Secretary to complete the reports described in sub18 section (d). 

19 ‘‘(f) SUNSET.—This section shall cease to be effective 

20 on December 31, 2035.’’. 

Æ 


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