119 S494 RS: National Plan for Epilepsy Act
U.S. Senate
2026-07-28
text/xml
EN
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1.This Act may be cited as the National Plan for Epilepsy Act
.2.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.3.Establishing a National Plan for EpilepsyPart 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:320C.Programs relating to epilepsy(a)National Plan for Epilepsy(1)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)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)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)(1)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)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)(A)The Advisory Council shall meet at least once each quarter. (B)Meetings with other expertsNot 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)All meetings of the Advisory Council shall be open to the public.(4)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)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)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)This section shall cease to be effective on December 31, 2035..1.This Act may be cited as the National Plan for Epilepsy Act
.2.Review to improve epilepsy programs, research, prevention, and care(a)The Secretary of Health and Human Services (referred to in this section as the Secretary
) shall review and, as necessary and appropriate, provide recommendations to Congress regarding, and update existing Federal programs, activities, and strategic plans related to, epilepsy research, prevention, early identification, diagnosis, and treatment for purposes of identifying and addressing knowledge gaps and improving health outcomes related to epilepsy.(b)The review under subsection (a) shall include—(1)a review of findings from evidence-based research on epilepsy, the status of ongoing, federally-funded research on epilepsy, knowledge gaps related to epilepsy, and disparities in populations with epilepsy;(2)a review of Federal programs related to epilepsy research, prevention, early identification, diagnosis, and treatment, which shall include consideration of—(A)gaps in, and opportunities for, coordination among such programs;(B)opportunities to inform global efforts to prevent, diagnose, treat, and cure epilepsy, as appropriate;(C)near- and long-term goals of such programs to improve research, prevention, early identification, diagnosis, and treatment of epilepsy; and(D)the level of Federal investment in preventing, diagnosing, treating, and curing epilepsy;(3)consideration of opportunities to—(A)improve collaboration between Federal agencies and relevant stakeholders to address gaps in programs, research, and services;(B)eliminate knowledge gaps in research on epilepsy, including a review of the impact of epilepsy on the health and well-being of individuals with epilepsy and their caregivers;(C)improve early diagnosis and coordination of the care and treatment of individuals with epilepsy;(D)better prevent sudden unexpected death in epilepsy and other epilepsy-related mortalities;(E)improve surveillance of epilepsy; and(F)support the development of new 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; and(4)a review of current public health strategies, and consideration of additional evidence-based strategies, related to epilepsy.(c)To inform the review under subsection (a), the Secretary shall regularly convene and solicit input from other Federal agencies, as appropriate, and relevant stakeholders, including patient advocates and non-Federal subject matter experts.(d)Not later than 2 years after the date of the enactment of this Act, the Secretary shall submit to the Committee on Health, Education, Labor, and Pensions of the Senate and the Committee on Energy and Commerce of the House of Representatives a report on the findings of the review conducted under subsection (a), including—(1)a description of steps the Secretary took to solicit stakeholder input pursuant to subsection (c) and a summary of feedback received from, and needs identified by, such stakeholders;(2)recommendations to improve coordination and support of Federal programs in order to better support people with epilepsy, epilepsy research, and data collection, and proposals for implementation of such recommendations, as appropriate; and(3)any changes to Federal programs, activities, or strategic plans recommended by the Secretary based on the review, and any statutory or other barriers that impede implementation of such changes. July 28, 2026Reported with an amendment