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[Congressional Bills 118th Congress]
[From the U.S. Government Publishing Office]
[S. 5353 Introduced in Senate (IS)]

<DOC>

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.

    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;
                    ``(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.''.
                                 <all>
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