Scarlett’s Sunshine on Sudden Unexpected Death Act

IIB 116TH CONGRESS 2D SESSION H. R. 2271 IN THE SENATE OF THE UNITED STATES SEPTEMBER 22, 2020 Received; read twice and referred to the Committee on Health, Education, Labor, and Pensions AN ACT To amend the Public Health Service Act to improve the health of children and help better understand and en- hance awareness about unexpected sudden death in early life. Be it enacted by the Senate and House of Representa- 1 tives of the United States of America in Congress assembled, 2 VerDate Sep 11 2014 03:52 Sep 23, 2020 Jkt 099200 PO 00000 Frm 00001 Fmt 6652 Sfmt 6201 E:\BILLS\H2271.RFS H2271 pamtmann on DSKBC07HB2PROD with BILLS 2 HR 2271 RFS SECTION 1. SHORT TITLE. 1 This Act may be cited as the ‘‘Scarlett’s Sunshine 2 on Sudden Unexpected Death Act’’. 3 SEC. 2. ADDRESSING SUDDEN UNEXPECTED INFANT DEATH 4 AND SUDDEN UNEXPECTED DEATH IN CHILD- 5 HOOD. 6 Part B of title XI of the Public Health Service Act 7 (42 U.S.C. 241 et seq.) is amended— 8 (1) in the part heading, by striking ‘‘SUDDEN 9 INFANT DEATH SYNDROME’’ and inserting ‘‘SUD- 10 DEN UNEXPECTED INFANT DEATH, SUDDEN IN- 11 FANT DEATH SYNDROME, AND SUDDEN UNEX- 12 PECTED DEATH IN CHILDHOOD’’; and 13 (2) by inserting before section 1122 the fol- 14 lowing: 15 ‘‘SEC. 1121. ADDRESSING SUDDEN UNEXPECTED INFANT 16 DEATH AND SUDDEN UNEXPECTED DEATH IN 17 CHILDHOOD. 18 ‘‘(a) IN GENERAL.—The Secretary may develop, sup- 19 port, or maintain programs or activities to address sudden 20 unexpected infant death and sudden unexpected death in 21 childhood, including by— 22 ‘‘(1) continuing to support the Sudden Unex- 23 pected Infant Death and Sudden Death in the 24 Young Case Registry of the Centers for Disease 25 Control and Prevention and other fatality case re- 26 VerDate Sep 11 2014 03:52 Sep 23, 2020 Jkt 099200 PO 00000 Frm 00002 Fmt 6652 Sfmt 6201 E:\BILLS\H2271.RFS H2271 pamtmann on DSKBC07HB2PROD with BILLS 3 HR 2271 RFS porting systems that include data pertaining to sud- 1 den unexpected infant death and sudden unexpected 2 death in childhood, as appropriate, including such 3 systems supported by the Health Resources and 4 Services Administration, in order to— 5 ‘‘(A) increase the number of States and ju- 6 risdictions participating in such systems; or 7 ‘‘(B) improve the utility of such systems, 8 which may include— 9 ‘‘(i) making summary data available 10 to the public in a timely manner on the 11 internet website of the Department of 12 Health and Human Services, in a manner 13 that, at a minimum, protects personal pri- 14 vacy to the extent required by applicable 15 Federal and State law; and 16 ‘‘(ii) making the data submitted to 17 such systems available to researchers, in a 18 manner that, at a minimum, protects per- 19 sonal privacy to the extent required by ap- 20 plicable Federal and State law; and 21 ‘‘(2) awarding grants or cooperative agreements 22 to States, Indian Tribes, and Tribal organizations 23 for purposes of— 24 VerDate Sep 11 2014 03:52 Sep 23, 2020 Jkt 099200 PO 00000 Frm 00003 Fmt 6652 Sfmt 6201 E:\BILLS\H2271.RFS H2271 pamtmann on DSKBC07HB2PROD with BILLS 4 HR 2271 RFS ‘‘(A) supporting fetal and infant mortality 1 and child death review programs for sudden un- 2 expected infant death and sudden unexpected 3 death in childhood, including by establishing 4 such programs at the local level; 5 ‘‘(B) improving data collection related to 6 sudden unexpected infant death and sudden un- 7 expected death in childhood, including by— 8 ‘‘(i) improving the completion of death 9 scene investigations and comprehensive au- 10 topsies that include a review of clinical his- 11 tory and circumstances of death with ap- 12 propriate ancillary testing; and 13 ‘‘(ii) training medical examiners, coro- 14 ners, death scene investigators, law en- 15 forcement personnel, emergency medical 16 technicians, paramedics, emergency depart- 17 ment personnel, and others who perform 18 death scene investigations with respect to 19 the deaths of infants and children, as ap- 20 propriate; 21 ‘‘(C) identifying, developing, and imple- 22 menting best practices to reduce or prevent 23 sudden unexpected infant death and sudden un- 24 VerDate Sep 11 2014 03:52 Sep 23, 2020 Jkt 099200 PO 00000 Frm 00004 Fmt 6652 Sfmt 6201 E:\BILLS\H2271.RFS H2271 pamtmann on DSKBC07HB2PROD with BILLS 5 HR 2271 RFS expected death in childhood, including practices 1 to reduce sleep-related infant deaths; 2 ‘‘(D) increasing the voluntary inclusion, in 3 fatality case reporting systems established for 4 the purpose of conducting research on sudden 5 unexpected infant death and sudden unexpected 6 death in childhood, of samples of tissues or ge- 7 netic materials from autopsies that have been 8 collected pursuant to Federal or State law; or 9 ‘‘(E) disseminating information and mate- 10 rials to health care professionals and the public 11 on risk factors that contribute to sudden unex- 12 pected infant death and sudden unexpected 13 death in childhood, which may include informa- 14 tion on risk factors that contribute to sleep-re- 15 lated sudden unexpected infant death or sudden 16 unexpected death in childhood. 17 ‘‘(b) APPLICATION.—To be eligible to receive a grant 18 or cooperative agreement under subsection (a)(2), a State, 19 Indian Tribe, or Tribal organization shall submit to the 20 Secretary an application at such time, in such manner, 21 and containing such information as the Secretary may re- 22 quire, including information on how such State will ensure 23 activities conducted under this section are coordinated 24 VerDate Sep 11 2014 03:52 Sep 23, 2020 Jkt 099200 PO 00000 Frm 00005 Fmt 6652 Sfmt 6201 E:\BILLS\H2271.RFS H2271 pamtmann on DSKBC07HB2PROD with BILLS 6 HR 2271 RFS with other federally-funded programs to reduce infant 1 mortality, as appropriate. 2 ‘‘(c) TECHNICAL ASSISTANCE.—The Secretary shall 3 provide technical assistance to States, Tribes, and Tribal 4 organizations receiving a grant or cooperative agreement 5 under subsection (a)(2) for purposes of carrying out ac- 6 tivities funded through the grant or cooperative agree- 7 ment. 8 ‘‘(d) REPORTING FORMS.— 9 ‘‘(1) IN GENERAL.—The Secretary shall, as ap- 10 propriate, encourage the use of sudden unexpected 11 infant death and sudden unexpected death in child- 12 hood reporting forms developed in collaboration with 13 the Centers for Disease Control and Prevention to 14 improve the quality of data submitted to the Sudden 15 Unexpected Infant Death and Sudden Death in the 16 Young Case Registry, and other fatality case report- 17 ing systems that include data pertaining to sudden 18 unexpected infant death and sudden unexpected 19 death in childhood. 20 ‘‘(2) UPDATE OF FORMS.—The Secretary shall 21 assess whether updates are needed to the sudden un- 22 expected infant death investigation reporting form 23 used by the Centers for Disease Control and Preven- 24 tion in order to improve the use of such form with 25 VerDate Sep 11 2014 03:52 Sep 23, 2020 Jkt 099200 PO 00000 Frm 00006 Fmt 6652 Sfmt 6201 E:\BILLS\H2271.RFS H2271 pamtmann on DSKBC07HB2PROD with BILLS 7 HR 2271 RFS other fatality case reporting systems supported by 1 the Department of Health and Human Services, and 2 shall make such updates as appropriate. 3 ‘‘(e) SUPPORT SERVICES.— 4 ‘‘(1) IN GENERAL.—The Secretary, acting 5 through the Administrator, shall award grants to 6 national organizations, State and local health de- 7 partments, community-based organizations, and non- 8 profit organizations for the provision of support 9 services to families who have had a child die of sud- 10 den unexpected infant death or sudden unexpected 11 death in childhood. 12 ‘‘(2) APPLICATION.—To be eligible to receive a 13 grant under subsection (1), an entity shall submit to 14 the Secretary an application at such time, in such 15 manner, and containing such information as the Sec- 16 retary may require. 17 ‘‘(3) USE OF FUNDS.—Amounts received under 18 a grant awarded under paragraph (1) may be 19 used— 20 ‘‘(A) to provide grief counseling, education, 21 home visits, 24-hour hotlines, or information, 22 resources, and referrals; 23 ‘‘(B) to ensure access to grief and bereave- 24 ment services; 25 VerDate Sep 11 2014 03:52 Sep 23, 2020 Jkt 099200 PO 00000 Frm 00007 Fmt 6652 Sfmt 6201 E:\BILLS\H2271.RFS H2271 pamtmann on DSKBC07HB2PROD with BILLS 8 HR 2271 RFS ‘‘(C) to build capacity in professionals 1 working with families who experience a sudden 2 death; or 3 ‘‘(D) to support peer-to-peer groups for 4 families who have lost a child to sudden unex- 5 pected infant death or sudden unexpected death 6 in childhood. 7 ‘‘(4) PREFERENCE.—In awarding grants under 8 paragraph (1), the Secretary shall give preference to 9 applicants that— 10 ‘‘(A) have a proven history of effective di- 11 rect support services and interventions for sud- 12 den unexpected infant death and sudden unex- 13 plained death in childhood; and 14 ‘‘(B) demonstrate experience through col- 15 laborations and partnerships for delivering serv- 16 ices described in paragraph (3). 17 ‘‘(f) DEFINITIONS.—In this section: 18 ‘‘(1) SUDDEN UNEXPECTED INFANT DEATH.— 19 The term ‘sudden unexpected infant death’— 20 ‘‘(A) means the sudden death of an infant 21 under 1 year of age that when first discovered 22 did not have an obvious cause; and 23 ‘‘(B) includes— 24 VerDate Sep 11 2014 03:52 Sep 23, 2020 Jkt 099200 PO 00000 Frm 00008 Fmt 6652 Sfmt 6201 E:\BILLS\H2271.RFS H2271 pamtmann on DSKBC07HB2PROD with BILLS 9 HR 2271 RFS ‘‘(i) such deaths that are explained; 1 and 2 ‘‘(ii) such deaths that remain unex- 3 plained (which are known as sudden infant 4 death syndrome). 5 ‘‘(2) SUDDEN UNEXPECTED DEATH IN CHILD- 6 HOOD.—The term ‘sudden unexpected death in 7 childhood’— 8 ‘‘(A) means the sudden death of a child 9 who is at least 1 year of age but not more than 10 17 years of age that, when first discovered, did 11 not have an obvious cause; and 12 ‘‘(B) includes— 13 ‘‘(i) such deaths that are explained; 14 and 15 ‘‘(ii) such deaths that remain unex- 16 plained (which are known as sudden unex- 17 plained death in childhood). 18 ‘‘(3) SUDDEN UNEXPLAINED DEATH IN CHILD- 19 HOOD.—The term ‘sudden unexplained death in 20 childhood’ means a sudden unexpected death in 21 childhood that remains unexplained after a thorough 22 case investigation. 23 ‘‘(g) AUTHORIZATION OF APPROPRIATIONS.—For the 24 purpose of carrying out this section, there is authorized 25 VerDate Sep 11 2014 03:52 Sep 23, 2020 Jkt 099200 PO 00000 Frm 00009 Fmt 6652 Sfmt 6201 E:\BILLS\H2271.RFS H2271 pamtmann on DSKBC07HB2PROD with BILLS 10 HR 2271 RFS to be appropriated $33,000,000 for each of fiscal years 1 2021 through 2024.’’. 2 SEC. 3. REPORT TO CONGRESS. 3 (a) IN GENERAL.—Not later than 2 years after the 4 date of enactment of this Act, and biennially thereafter, 5 the Secretary of Health and Human Services shall submit 6 to the Committee on Energy and Commerce of the House 7 of Representatives and the Committee on Health, Edu- 8 cation, Labor, and Pensions of the Senate a report that 9 contains, with respect to the reporting period— 10 (1) information regarding the incidence and 11 number of sudden unexpected infant deaths and 12 sudden unexpected deaths in childhood (including 13 the number of such infant and child deaths that re- 14 main unexplained after investigation), including, to 15 the extent practicable— 16 (A) a summary of such information by ra- 17 cial and ethnic group, and by State; 18 (B) aggregate information obtained from 19 death scene investigations and autopsies; and 20 (C) recommendations for reducing the inci- 21 dence of sudden unexpected infant death and 22 sudden unexpected death in childhood; 23 (2) an assessment of the extent to which var- 24 ious approaches of reducing and preventing sudden 25 VerDate Sep 11 2014 03:52 Sep 23, 2020 Jkt 099200 PO 00000 Frm 00010 Fmt 6652 Sfmt 6201 E:\BILLS\H2271.RFS H2271 pamtmann on DSKBC07HB2PROD with BILLS 11 HR 2271 RFS unexpected infant death and sudden unexpected 1 death in childhood have been effective; and 2 (3) a description of the activities carried out 3 under section 1121 of the Public Health Service Act 4 (as added by section 2). 5 (b) DEFINITIONS.—In this section, the terms ‘‘sud- 6 den unexpected infant death’’ and ‘‘sudden unexpected 7 death in childhood’’ have the meanings given such terms 8 in section 1121 of the Public Health Service Act (as added 9 by section 2). 10 Passed the House of Representatives September 21, 2020. Attest: CHERYL L. JOHNSON, Clerk. VerDate Sep 11 2014 03:52 Sep 23, 2020 Jkt 099200 PO 00000 Frm 00011 Fmt 6652 Sfmt 6201 E:\BILLS\H2271.RFS H2271 pamtmann on DSKBC07HB2PROD with BILLS