S. 494 — what changed

removed 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:

removed “320C. Programs relating to epilepsy

removed “(a) National Plan for Epilepsy

removed “(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.

removed “(2) Activities—In carrying out the National Plan, the Secretary shall—

removed “(A) establish, maintain, and periodically update an integrated national plan to prevent, diagnose, treat, and cure epilepsy;

removed “(B) provide information, including an estimate of the level of Federal investment in preventing, diagnosing, treating, and curing epilepsy;

removed “(C) coordinate research and services related to epilepsy, across all Federal agencies;

removed “(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;

removed “(E) improve the—

removed “(i) early diagnosis of epilepsy; and

removed “(ii) coordination of the care and treatment of individuals living with epilepsy;

removed “(F) review the impact of epilepsy on the physical, mental, and social health of individuals living with epilepsy and their caregivers;

removed “(G) solicit public comments and consider consensus recommendations from collaborations in the epilepsy community;

removed “(H) carry out an annual assessment on progress of the activities described in this subsection;

removed “(I) coordinate with international bodies, to the degree possible, to integrate and inform the global mission to prevent, diagnose, treat, and cure epilepsy; and

removed “(J) carry out other such activities as the Secretary determines appropriate.

removed “(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—

removed “(1) recommendations for priority actions;

removed “(2) a description of the steps that have been, or should be, taken to implement such recommendations; and

removed “(3) such other items as the Secretary determines appropriate.

removed “(c) Advisory Council

removed “(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.

removed “(2) Membership—The Advisory Council shall be comprised of—

removed “(A) representatives appointed by the Secretary from relevant Federal departments and agencies, including—

removed “(i) the National Institutes of Health;

removed “(ii) the Centers for Medicare & Medicaid Services;

removed “(iii) the Centers for Disease Control and Prevention;

removed “(iv) the Food and Drug Administration;

removed “(v) the Health Resources and Services Administration;

removed “(vi) the Department of Defense; and

removed “(vii) the Department of Veterans Affairs; and

removed “(B) expert non-Federal members appointed by the Secretary that reflect the diversity of epilepsy, including—

removed “(i) 4 individuals, each of whom is living with a different type of epilepsy;

removed “(ii) 2 family caregivers for individuals with epilepsy;

removed “(iii) 2 licensed or accredited health care providers supported by a relevant professional medical society, including at least 1 epileptologist or neurologist;

removed “(iv) 2 biomedical researchers with epilepsy-related expertise in basic, translational, or clinical population science or drug development science; and

removed “(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.

removed “(3) Meetings

removed “(A) In general—The Advisory Council shall meet at least once each quarter.

removed “(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.

removed “(C) Public meetings—All meetings of the Advisory Council shall be open to the public.

removed “(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—

removed “(A) an evaluation of all federally funded efforts in preventing, diagnosing, treating, and curing epilepsy, and the outcomes of such efforts;

removed “(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;

removed “(C) recommendations to—

removed “(i) provide effective, timely, and responsive diagnosis treatment and care to improve health outcomes and quality of life;

removed “(ii) foster research and innovation leading to more effective treatments and potential cures for epilepsy;

removed “(iii) strengthen data and information systems including better surveillance of epilepsy;

removed “(iv) increase public awareness about epilepsy and reduce stigma and discrimination;

removed “(v) increase access to expert and specialized care for people with epilepsy;

removed “(vi) eliminate access to care disparities experienced by individuals with epilepsy;

removed “(vii) prevent sudden unexpected death in epilepsy and other epilepsy-related mortalities;

removed “(viii) reduce the financial impact of epilepsy on families living with epilepsy;

removed “(ix) prevent epilepsy and promote healthy behaviors; and

removed “(x) an evaluation of the implementation of the National Plan, and its outcomes.

removed “(d) Annual reports—The Secretary shall annually submit to Congress a report that includes—

removed “(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;

removed “(2) recommendations for—

removed “(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);

removed “(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

removed “(C) implementation steps to address priority actions described in subparagraphs (A) and (B); and

removed “(3) a description of the progress made in carrying out the National Plan.

removed “(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).

removed “(f) Sunset—This section shall cease to be effective on December 31, 2035.”