National Plan for Epilepsy Act

[Congressional Bills 119th Congress]
[From the U.S. Government Publishing Office]
[S. 494 Introduced in Senate (IS)]

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119th CONGRESS
  1st 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, and Ms. Hassan)
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.''.
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