| 1 | 1 | | II |
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| 2 | 2 | | 119THCONGRESS |
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| 3 | 3 | | 1 |
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| 4 | 4 | | STSESSION S. 494 |
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| 5 | 5 | | To establish a national plan to coordinate research on epilepsy, and for |
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| 6 | 6 | | other purposes. |
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| 7 | 7 | | IN THE SENATE OF THE UNITED STATES |
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| 8 | 8 | | FEBRUARY10, 2025 |
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| 9 | 9 | | Mr. S |
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| 10 | 10 | | CHMITT(for himself, Ms. KLOBUCHAR, Mr. BOOZMAN, and Ms. HAS- |
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| 11 | 11 | | SAN) introduced the following bill; which was read twice and referred to |
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| 12 | 12 | | the Committee on Health, Education, Labor, and Pensions |
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| 13 | 13 | | A BILL |
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| 14 | 14 | | To establish a national plan to coordinate research on |
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| 15 | 15 | | epilepsy, and for other purposes. |
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| 16 | 16 | | Be it enacted by the Senate and House of Representa-1 |
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| 17 | 17 | | tives of the United States of America in Congress assembled, 2 |
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| 18 | 18 | | SECTION 1. SHORT TITLE. 3 |
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| 19 | 19 | | This Act may be cited as the ‘‘National Plan for Epi-4 |
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| 20 | 20 | | lepsy Act’’. 5 |
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| 21 | 21 | | SEC. 2. FINDINGS. 6 |
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| 22 | 22 | | Congress finds as follows: 7 |
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| 23 | 23 | | (1) Epilepsy is a brain disorder that causes re-8 |
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| 24 | 24 | | curring and unprovoked seizures and affects people 9 |
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| 28 | 28 | | of all ages, affecting nearly 3,000,000 adults and 1 |
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| 29 | 29 | | 456,000 children in the United States. 2 |
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| 30 | 30 | | (2) Epilepsy and seizures can develop in any 3 |
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| 31 | 31 | | person at any age. One in 26 people will develop a 4 |
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| 32 | 32 | | form of epilepsy in their lifetime, with people from 5 |
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| 33 | 33 | | all demographic groups and walks of life being im-6 |
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| 34 | 34 | | pacted. 7 |
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| 35 | 35 | | (3) In approximately half of all cases of epi-8 |
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| 36 | 36 | | lepsy, the underlying cause of the disease is un-9 |
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| 37 | 37 | | known. 10 |
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| 38 | 38 | | (4) Epilepsy is a spectrum disease comprised of 11 |
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| 39 | 39 | | many diagnoses and an ever-growing number of rare 12 |
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| 40 | 40 | | epilepsies. There are many different types of sei-13 |
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| 41 | 41 | | zures and varying levels of seizure control. 14 |
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| 42 | 42 | | (5) Over 30 percent of people with epilepsy live 15 |
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| 43 | 43 | | with uncontrolled seizures. 16 |
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| 44 | 44 | | (6) Individuals with epilepsy have a 3-times 17 |
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| 45 | 45 | | higher risk of early death than the general popu-18 |
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| 46 | 46 | | lation and that risk is even higher for individuals 19 |
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| 47 | 47 | | with uncontrolled seizures. 20 |
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| 48 | 48 | | (7) Thirty-two percent of adults with epilepsy 21 |
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| 49 | 49 | | are unable to work. 22 |
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| 50 | 50 | | (8) Fifty-three percent of individuals with un-23 |
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| 51 | 51 | | controlled seizures live in households earning less 24 |
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| 52 | 52 | | than $25,000 per year. 25 |
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| 55 | 55 | | •S 494 IS |
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| 56 | 56 | | (9) Health care costs associated with epilepsy 1 |
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| 57 | 57 | | and seizures exceed $54,000,000,000 per year in the 2 |
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| 58 | 58 | | United States. 3 |
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| 59 | 59 | | SEC. 3. ESTABLISHING A NATIONAL PLAN FOR EPILEPSY. 4 |
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| 60 | 60 | | Part B of title III of the Public Health Service Act 5 |
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| 61 | 61 | | (42 U.S.C. 243 et seq.) is amended by adding at the end 6 |
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| 62 | 62 | | the following: 7 |
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| 63 | 63 | | ‘‘SEC. 320C. PROGRAMS RELATING TO EPILEPSY. 8 |
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| 64 | 64 | | ‘‘(a) N |
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| 65 | 65 | | ATIONALPLAN FOREPILEPSY.— 9 |
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| 66 | 66 | | ‘‘(1) I |
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| 67 | 67 | | N GENERAL.—The Secretary shall carry 10 |
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| 68 | 68 | | out a national project, to be known as the ‘National 11 |
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| 69 | 69 | | Plan for Epilepsy’ (referred to in this section as the 12 |
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| 70 | 70 | | ‘National Plan’), to prevent, diagnose, treat, and 13 |
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| 71 | 71 | | cure epilepsy. 14 |
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| 72 | 72 | | ‘‘(2) A |
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| 73 | 73 | | CTIVITIES.—In carrying out the National 15 |
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| 74 | 74 | | Plan, the Secretary shall— 16 |
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| 75 | 75 | | ‘‘(A) establish, maintain, and periodically 17 |
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| 76 | 76 | | update an integrated national plan to prevent, 18 |
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| 77 | 77 | | diagnose, treat, and cure epilepsy; 19 |
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| 78 | 78 | | ‘‘(B) provide information, including an es-20 |
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| 79 | 79 | | timate of the level of Federal investment in pre-21 |
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| 80 | 80 | | venting, diagnosing, treating, and curing epi-22 |
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| 81 | 81 | | lepsy; 23 |
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| 82 | 82 | | ‘‘(C) coordinate research and services re-24 |
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| 83 | 83 | | lated to epilepsy, across all Federal agencies; 25 |
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| 87 | 87 | | ‘‘(D) encourage the development of safe 1 |
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| 88 | 88 | | and effective treatments, strategies, and other 2 |
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| 89 | 89 | | approaches to prevent, diagnose, treat, and cure 3 |
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| 90 | 90 | | epilepsy or to enhance functioning and improve 4 |
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| 91 | 91 | | quality of life for individuals with epilepsy and 5 |
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| 92 | 92 | | their caregivers; 6 |
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| 93 | 93 | | ‘‘(E) improve the— 7 |
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| 94 | 94 | | ‘‘(i) early diagnosis of epilepsy; and 8 |
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| 95 | 95 | | ‘‘(ii) coordination of the care and 9 |
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| 96 | 96 | | treatment of individuals living with epi-10 |
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| 97 | 97 | | lepsy; 11 |
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| 98 | 98 | | ‘‘(F) review the impact of epilepsy on the 12 |
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| 99 | 99 | | physical, mental, and social health of individ-13 |
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| 100 | 100 | | uals living with epilepsy and their caregivers; 14 |
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| 101 | 101 | | ‘‘(G) solicit public comments and consider 15 |
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| 102 | 102 | | consensus recommendations from collaborations 16 |
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| 103 | 103 | | in the epilepsy community; 17 |
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| 104 | 104 | | ‘‘(H) carry out an annual assessment on 18 |
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| 105 | 105 | | progress of the activities described in this sub-19 |
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| 106 | 106 | | section; 20 |
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| 107 | 107 | | ‘‘(I) coordinate with international bodies, 21 |
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| 108 | 108 | | to the degree possible, to integrate and inform 22 |
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| 109 | 109 | | the global mission to prevent, diagnose, treat, 23 |
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| 110 | 110 | | and cure epilepsy; and 24 |
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| 114 | 114 | | ‘‘(J) carry out other such activities as the 1 |
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| 115 | 115 | | Secretary determines appropriate. 2 |
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| 116 | 116 | | ‘‘(b) A |
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| 117 | 117 | | NNUALASSESSMENT.—Not later than 2 years 3 |
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| 118 | 118 | | after the date of enactment of the National Plan for Epi-4 |
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| 119 | 119 | | lepsy Act, and annually thereafter, the Secretary shall 5 |
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| 120 | 120 | | carry out an assessment of the Nation’s progress in pre-6 |
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| 121 | 121 | | paring for and responding to the escalating burden of epi-7 |
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| 122 | 122 | | lepsy. Such assessment shall include— 8 |
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| 123 | 123 | | ‘‘(1) recommendations for priority actions; 9 |
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| 124 | 124 | | ‘‘(2) a description of the steps that have been, 10 |
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| 125 | 125 | | or should be, taken to implement such recommenda-11 |
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| 126 | 126 | | tions; and 12 |
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| 127 | 127 | | ‘‘(3) such other items as the Secretary deter-13 |
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| 128 | 128 | | mines appropriate. 14 |
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| 129 | 129 | | ‘‘(c) A |
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| 130 | 130 | | DVISORYCOUNCIL.— 15 |
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| 131 | 131 | | ‘‘(1) I |
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| 132 | 132 | | N GENERAL.—The Secretary shall estab-16 |
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| 133 | 133 | | lish and maintain an Advisory Council on Epilepsy 17 |
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| 134 | 134 | | Research, Care, and Services (referred to in this sec-18 |
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| 135 | 135 | | tion as the ‘Advisory Council’) to advise the Sec-19 |
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| 136 | 136 | | retary on epilepsy-related issues. 20 |
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| 137 | 137 | | ‘‘(2) M |
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| 138 | 138 | | EMBERSHIP.—The Advisory Council 21 |
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| 139 | 139 | | shall be comprised of— 22 |
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| 140 | 140 | | ‘‘(A) representatives appointed by the Sec-23 |
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| 141 | 141 | | retary from relevant Federal departments and 24 |
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| 142 | 142 | | agencies, including— 25 |
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| 146 | 146 | | ‘‘(i) the National Institutes of Health; 1 |
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| 147 | 147 | | ‘‘(ii) the Centers for Medicare & Med-2 |
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| 148 | 148 | | icaid Services; 3 |
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| 149 | 149 | | ‘‘(iii) the Centers for Disease Control 4 |
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| 150 | 150 | | and Prevention; 5 |
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| 151 | 151 | | ‘‘(iv) the Food and Drug Administra-6 |
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| 152 | 152 | | tion; 7 |
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| 153 | 153 | | ‘‘(v) the Health Resources and Serv-8 |
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| 154 | 154 | | ices Administration; 9 |
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| 155 | 155 | | ‘‘(vi) the Department of Defense; and 10 |
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| 156 | 156 | | ‘‘(vii) the Department of Veterans Af-11 |
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| 157 | 157 | | fairs; and 12 |
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| 158 | 158 | | ‘‘(B) expert non-Federal members ap-13 |
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| 159 | 159 | | pointed by the Secretary that reflect the diver-14 |
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| 160 | 160 | | sity of epilepsy, including— 15 |
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| 161 | 161 | | ‘‘(i) 4 individuals, each of whom is liv-16 |
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| 162 | 162 | | ing with a different type of epilepsy; 17 |
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| 163 | 163 | | ‘‘(ii) 2 family caregivers for individ-18 |
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| 164 | 164 | | uals with epilepsy; 19 |
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| 165 | 165 | | ‘‘(iii) 2 licensed or accredited health 20 |
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| 166 | 166 | | care providers supported by a relevant pro-21 |
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| 167 | 167 | | fessional medical society, including at least 22 |
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| 168 | 168 | | 1 epileptologist or neurologist; 23 |
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| 169 | 169 | | ‘‘(iv) 2 biomedical researchers with 24 |
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| 170 | 170 | | epilepsy-related expertise in basic, 25 |
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| 173 | 173 | | •S 494 IS |
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| 174 | 174 | | translational, or clinical population science 1 |
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| 175 | 175 | | or drug development science; and 2 |
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| 176 | 176 | | ‘‘(v) 3 representatives from 3 separate 3 |
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| 177 | 177 | | nonprofit organizations directly connected 4 |
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| 178 | 178 | | with epilepsy that have demonstrated expe-5 |
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| 179 | 179 | | rience in epilepsy research or epilepsy pa-6 |
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| 180 | 180 | | tient care and other services. 7 |
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| 181 | 181 | | ‘‘(3) M |
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| 182 | 182 | | EETINGS.— 8 |
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| 183 | 183 | | ‘‘(A) I |
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| 184 | 184 | | N GENERAL.—The Advisory Council 9 |
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| 185 | 185 | | shall meet at least once each quarter. 10 |
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| 186 | 186 | | ‘‘(B) M |
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| 187 | 187 | | EETINGS WITH OTHER EXPERTS .— 11 |
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| 188 | 188 | | Not later than 2 years after the date of enact-12 |
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| 189 | 189 | | ment of the National Plan for Epilepsy Act, 13 |
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| 190 | 190 | | and every 2 years thereafter, the Advisory 14 |
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| 191 | 191 | | Council shall convene a meeting of Federal and 15 |
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| 192 | 192 | | non-Federal organizations to discuss epilepsy 16 |
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| 193 | 193 | | research. 17 |
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| 194 | 194 | | ‘‘(C) P |
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| 195 | 195 | | UBLIC MEETINGS.—All meetings of 18 |
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| 196 | 196 | | the Advisory Council shall be open to the pub-19 |
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| 197 | 197 | | lic. 20 |
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| 198 | 198 | | ‘‘(4) R |
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| 199 | 199 | | EPORTING.—Not later than 18 months 21 |
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| 200 | 200 | | after the date of enactment of the National Plan for 22 |
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| 201 | 201 | | Epilepsy Act, and every 2 years thereafter, the Advi-23 |
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| 202 | 202 | | sory Council shall provide to the Secretary and Con-24 |
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| 203 | 203 | | gress a report containing— 25 |
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| 207 | 207 | | ‘‘(A) an evaluation of all federally funded 1 |
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| 208 | 208 | | efforts in preventing, diagnosing, treating, and 2 |
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| 209 | 209 | | curing epilepsy, and the outcomes of such ef-3 |
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| 210 | 210 | | forts; 4 |
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| 211 | 211 | | ‘‘(B) recommendations for priority actions 5 |
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| 212 | 212 | | to better coordinate, expand, and better support 6 |
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| 213 | 213 | | Federal programs in order to better support 7 |
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| 214 | 214 | | people with epilepsy, epilepsy research, and 8 |
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| 215 | 215 | | data collection; 9 |
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| 216 | 216 | | ‘‘(C) recommendations to— 10 |
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| 217 | 217 | | ‘‘(i) provide effective, timely, and re-11 |
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| 218 | 218 | | sponsive diagnosis treatment and care to 12 |
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| 219 | 219 | | improve health outcomes and quality of 13 |
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| 220 | 220 | | life; 14 |
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| 221 | 221 | | ‘‘(ii) foster research and innovation 15 |
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| 222 | 222 | | leading to more effective treatments and 16 |
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| 223 | 223 | | potential cures for epilepsy; 17 |
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| 224 | 224 | | ‘‘(iii) strengthen data and information 18 |
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| 225 | 225 | | systems including better surveillance of 19 |
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| 226 | 226 | | epilepsy; 20 |
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| 227 | 227 | | ‘‘(iv) increase public awareness about 21 |
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| 228 | 228 | | epilepsy and reduce stigma and discrimina-22 |
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| 229 | 229 | | tion; 23 |
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| 230 | 230 | | ‘‘(v) increase access to expert and spe-24 |
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| 231 | 231 | | cialized care for people with epilepsy; 25 |
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| 235 | 235 | | ‘‘(vi) eliminate access to care dispari-1 |
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| 236 | 236 | | ties experienced by individuals with epi-2 |
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| 237 | 237 | | lepsy; 3 |
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| 238 | 238 | | ‘‘(vii) prevent sudden unexpected 4 |
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| 239 | 239 | | death in epilepsy and other epilepsy-related 5 |
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| 240 | 240 | | mortalities; 6 |
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| 241 | 241 | | ‘‘(viii) reduce the financial impact of 7 |
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| 242 | 242 | | epilepsy on families living with epilepsy; 8 |
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| 243 | 243 | | ‘‘(ix) prevent epilepsy and promote 9 |
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| 244 | 244 | | healthy behaviors; and 10 |
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| 245 | 245 | | ‘‘(x) an evaluation of the implementa-11 |
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| 246 | 246 | | tion of the National Plan, and its out-12 |
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| 247 | 247 | | comes. 13 |
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| 248 | 248 | | ‘‘(d) A |
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| 249 | 249 | | NNUALREPORTS.—The Secretary shall annu-14 |
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| 250 | 250 | | ally submit to Congress a report that includes— 15 |
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| 251 | 251 | | ‘‘(1) an evaluation of all federally funded efforts 16 |
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| 252 | 252 | | in epilepsy research, prevention, diagnosis, treat-17 |
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| 253 | 253 | | ment, clinical care, and institutional-, home-, and 18 |
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| 254 | 254 | | community-based programs, and the outcomes of 19 |
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| 255 | 255 | | such efforts; 20 |
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| 256 | 256 | | ‘‘(2) recommendations for— 21 |
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| 257 | 257 | | ‘‘(A) priority actions based on the most re-22 |
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| 258 | 258 | | cent assessment submitted by the Secretary 23 |
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| 259 | 259 | | under subsection (b) and the recommendations 24 |
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| 262 | 262 | | •S 494 IS |
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| 263 | 263 | | contained in the most recent report of the Advi-1 |
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| 264 | 264 | | sory Council under subsection (c)(4); 2 |
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| 265 | 265 | | ‘‘(B) priority actions to improve all feder-3 |
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| 266 | 266 | | ally funded efforts in epilepsy research, preven-4 |
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| 267 | 267 | | tion, diagnosis, treatment, clinical care, and in-5 |
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| 268 | 268 | | stitutional-, home-, and community-based pro-6 |
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| 269 | 269 | | grams; and 7 |
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| 270 | 270 | | ‘‘(C) implementation steps to address pri-8 |
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| 271 | 271 | | ority actions described in subparagraphs (A) 9 |
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| 272 | 272 | | and (B); and 10 |
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| 273 | 273 | | ‘‘(3) a description of the progress made in car-11 |
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| 274 | 274 | | rying out the National Plan. 12 |
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| 275 | 275 | | ‘‘(e) D |
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| 276 | 276 | | ATASHARING.—Agencies both within the De-13 |
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| 277 | 277 | | partment of Health and Human Services and outside of 14 |
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| 278 | 278 | | such Department that have data relating to epilepsy shall 15 |
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| 279 | 279 | | share such data with the Secretary as necessary to enable 16 |
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| 280 | 280 | | the Secretary to complete the reports described in sub-17 |
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| 281 | 281 | | section (d). 18 |
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| 282 | 282 | | ‘‘(f) S |
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| 283 | 283 | | UNSET.—This section shall cease to be effective 19 |
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| 284 | 284 | | on December 31, 2035.’’. 20 |
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| 285 | 285 | | Æ |
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