119-hr1189

[Congressional Bills 119th Congress]
[From the U.S. Government Publishing Office]
[H.R. 1189 Introduced in House

    (IH) ]

<DOC>

119th CONGRESS
 1st Session
 H. R. 1189

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

_______________________________________________________________________

 IN THE HOUSE OF REPRESENTATIVES

 February 11, 2025

 Mr. Costa (for himself and Mr. Murphy) introduced the following bill; 
 which was referred to the Committee on Energy and Commerce

_______________________________________________________________________

 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; and
 ``
            (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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