I 

114TH CONGRESS 

2D SESSION H. R. 4571 

To amend the Public Health Service Act to improve the health of children 

and help better understand and enhance awareness about unexpected 

sudden death in early life. 

IN THE HOUSE OF REPRESENTATIVES 

FEBRUARY 12, 2016 

Ms. MOORE (for herself, Ms. JACKSON LEE, Mr. GRIJALVA, Mr. RYAN of 

Ohio, Mr. HASTINGS, Mr. RANGEL, Mrs. BEATTY, and Ms. BORDALLO) 

introduced the following bill; which was referred to the Committee on Energy and Commerce 

A BILL 

To amend the Public Health Service Act to improve the 

health of children and help better understand and enhance awareness about unexpected sudden death in early 

life. 

1 Be it enacted by the Senate and House of Representa2 tives of the United States of America in Congress assembled, 

3 SECTION 1. SHORT TITLE. 

4 This Act may be cited as the ‘‘Reducing Unexpected 

5 Deaths in Infants and Children Act of 2016’’. 

6 SEC. 2. FINDINGS. 

7 Congress finds as follows: 


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1 (1) Nearly 3,500 infants die suddenly and un2 expectedly every year. 

3 (2) Infants born to low-income women are more 

4 likely to die before their first birthday than infants 

5 born in higher-income households. 

6 (3) Non-Hispanic Black infants are more than 

7 twice as likely to die of Sudden Unexpected Infant 

8 Death compared to non-Hispanic White infants. 

9 (4) Disparities in sudden unexpected infant 

10 deaths account for 14 percent of the infant mortality 

11 gap between non-Hispanic Black infants compared 

12 to non-Hispanic White infants. 

13 (5) Preterm birth and low birth weight may be 

14 contributing factors in deaths from Sudden Infant 

15 Death Syndrome, which is a type of sudden unex16 pected infant death and the leading cause of 

17 postneonatal deaths. 

18 (6) Timely prenatal care and appropriate birth 

19 spacing can reduce the risks of early delivery and 

20 low birth weight. 

21 (7) Women can reduce the risk of infant mor22 tality to their infants by improving their own health, 

23 both preconception and during pregnancy. 

24 (8) The American Academy of Pediatrics rec25 ommends regular prenatal care as a strategy for 


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1 preventing SIDS, noting that there is ‘‘substantial 

2 epidemiologic evidence linking a lower risk of SIDS 

3 for infants whose mothers obtain regular prenatal 

4 care’’. 

5 SEC. 3. AMENDMENT TO THE PUBLIC HEALTH SERVICE 

6 ACT. 

7 Title III of the Public Health Service Act (42 U.S.C. 

8 241 et seq.) is amended by adding at the end the fol9 lowing: 

10 ‘‘PART W—SUDDEN UNEXPECTED INFANT DEATH 

11 AND SUDDEN UNEXPLAINED DEATH IN 

12 CHILDHOOD 

13 ‘‘SEC. 399OO. DEFINITIONS. 

14 ‘‘In this part: 

15 ‘‘(1) ADMINISTRATOR.—The term ‘Adminis16 trator’ means the Administrator of the Health Re17 sources and Services Administration. 

18 ‘‘(2) DEATH SCENE INVESTIGATOR.—The term 

19 ‘death scene investigator’ means an individual cer20 tified as a death scene investigator by an accredited 

21 professional certification board. 

22 ‘‘(3) DIRECTOR.—The term ‘Director’ means 

23 the Director of the Centers for Disease Control and 

24 Prevention. 


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1 ‘‘(4) STATE.—The term ‘State’ has the mean2 ing given to such term in section 2, except that such 

3 term includes tribes and tribal organizations (as 

4 such terms are defined in section 4 of the Indian 

5 Self-Determination and Education Assistance Act). 

6 ‘‘(5) SUDDEN UNEXPECTED INFANT DEATH; 

7 SUID.—The terms ‘sudden unexpected infant death’ 

8 and ‘SUID’ mean the sudden death of an infant 

9 under 1 year of age that when first discovered did 

10 not have an obvious cause. Such terms include those 

11 deaths that are later determined to be from ex12 plained as well as unexplained causes. 

13 ‘‘(6) SUDDEN UNEXPLAINED DEATH IN CHILD14 HOOD; SUDC.—The terms ‘sudden unexplained death 

15 in childhood’ and ‘SUDC’ mean the sudden death of 

16 a child who is 1 year of age or older, which remains 

17 unexplained after a thorough case investigation that 

18 includes a review of the clinical history and cir19 cumstances of death and performance of a complete 

20 autopsy with appropriate ancillary testing. 

21 ‘‘SEC. 399OO–1. DEATH SCENE INVESTIGATION AND AU22 TOPSY. 

23 ‘‘(a) INVESTIGATIONS.— 

24 ‘‘(1) GRANTS.—The Secretary, acting through 

25 the Director, shall award grants to States to enable 


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1 such States to improve the completion of comprehen2 sive death scene investigations for sudden unex3 pected infant death and sudden unexplained death in 

4 childhood. 

5 ‘‘(2) APPLICATION.—To be eligible to receive a 

6 grant under paragraph (1), a State shall submit to 

7 the Secretary an application at such time, in such 

8 manner, and containing such information as the Sec9 retary may require. 

10 ‘‘(3) USE OF FUNDS.— 

11 ‘‘(A) IN GENERAL.—A State shall use 

12 amounts received under a grant under para13 graph (1) to improve the completion of com14 prehensive death scene investigations for sud15 den unexpected infant death and sudden unex16 plained death in childhood, including through 

17 the awarding of subgrants to local jurisdictions 

18 to be used to implement standard death scene 

19 investigation protocols for sudden unexpected 

20 infant death and sudden unexplained death in 

21 childhood and conduct comprehensive, stand22 ardized autopsies. 

23 ‘‘(B) PROTOCOLS.—A standard death 

24 scene protocol implemented under subparagraph 

25 (A) shall include the obtaining of information 


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1 on current and past medical history of the in2 fant/child, the circumstances surrounding the 

3 death including any suspicious circumstances, 

4 the sleep position and sleep environment of the 

5 infant/child, and whether there were any acci6 dental or environmental factors associated with 

7 the death. The Director in consultation with 

8 medical examiners, coroners, death scene inves9 tigators, law enforcement, emergency medical 

10 technicians and paramedics, public health agen11 cies, and other individuals or groups determined 

12 necessary by the Director shall develop a stand13 ard death scene protocol for children from 1 to 

14 4 years of age, using existing protocols devel15 oped for SUID. 

16 ‘‘(b) AUTOPSIES.— 

17 ‘‘(1) IN GENERAL.—The Secretary, acting 

18 through the Director, shall award grants to States 

19 to enable such States to increase the rate at which 

20 comprehensive, standardized autopsies are per21 formed for sudden unexpected infant death and sud22 den unexplained death in childhood. 

23 ‘‘(2) APPLICATION.—To be eligible to receive a 

24 grant under paragraph (1), a State shall submit to 

25 the Secretary an application at such time, in such 


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1 manner, and containing such information as the Sec2 retary may require. 

3 ‘‘(3) COMPREHENSIVE AUTOPSY.—For purposes 

4 of this subsection, a comprehensive autopsy shall in5 clude genetic testing and a full external and internal 

6 examination, including microscopic examination, of 

7 all major organs and tissues including the brain, 

8 complete radiographs, vitreous fluid analysis, photo 

9 documentation, selected microbiology when indi10 cated, metabolic testing, and toxicology screening of 

11 the infant or child involved. 

12 ‘‘(4) GUIDELINES.—The Director, in consulta13 tion with board certified forensic pathologists, med14 ical examiners, coroners, pediatric pathologists, pedi15 atric cardiologists, pediatric neuropathologists and 

16 geneticists, and other individuals and groups deter17 mined necessary by the Director shall develop na18 tional guidelines for a standard autopsy protocol for 

19 sudden unexpected infant death and sudden unex20 plained death in childhood. The Director shall en21 sure that the majority of such consultation is with 

22 board certified forensic pathologists, medical exam23 iners, and coroners. The Director is encouraged to 

24 seek additional input from child abuse experts, be25 reavement specialists, parents, and public health 


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1 agencies on nonmedical aspects of the autopsy guide2 lines. In developing such protocol, the Director shall 

3 consider autopsy protocols used by State and local 

4 jurisdictions. 

5 ‘‘(c) AUTHORIZATION OF APPROPRIATIONS.—There 

6 is authorized to be appropriated $8,000,000 for each of 

7 fiscal years 2017 through 2021 to carry out this section. 

8 ‘‘SEC. 399OO–2. TRAINING. 

9 ‘‘(a) GRANTS.—The Secretary, acting through the 

10 Director, shall award grants to eligible entities for the pro11 vision of training on death scene investigation specific for 

12 SUID and SUDC. 

13 ‘‘(b) ELIGIBLE ENTITIES.—To be eligible to receive 

14 a grant under subsection (a), an entity shall— 

15 ‘‘(1) be— 

16 ‘‘(A) a State or local government entity; or 

17 ‘‘(B) a nonprofit private entity; and 

18 ‘‘(2) submit to the Secretary an application at 

19 such time, in such manner, and containing such in20 formation as the Secretary may require. 

21 ‘‘(c) USE OF FUNDS.—An eligible entity shall use 

22 amounts received under a grant under this section to— 

23 ‘‘(1) provide training to medical examiners, 

24 coroners, death scene investigators, law enforcement 

25 personnel, justices of the peace, and emergency medVerDate Sep 11 2014 23:50 Feb 16, 2016 Jkt 059200 PO 00000 Frm 00008 Fmt 6652 Sfmt 6201 E:\BILLS\H4571.IH H4571

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1 ical technicians or paramedics concerning death 

2 scene investigations for SUID and SUDC, including 

3 the use of standard death scene investigation proto4 cols that include information on the current and 

5 past medical history of the infant/child, the cir6 cumstances surrounding the death including any 

7 suspicious circumstances, the sleep position and 

8 sleep environment of the infant/child, and whether 

9 there were any accidental or environmental factors 

10 associated with the death; 

11 ‘‘(2) provide training directly to individuals who 

12 are responsible for conducting and reviewing death 

13 scene investigations for sudden unexpected infant 

14 death and sudden unexplained death in childhood; 

15 ‘‘(3) provide training to multidisciplinary teams, 

16 including teams that have a medical examiner or 

17 coroner, death scene investigator, law enforcement 

18 representative, and an emergency medical technician 

19 or paramedic; 

20 ‘‘(4) in the case of national and State-based 

21 grantees that are comprised of medical examiners, 

22 coroners, death scene investigators, law enforcement 

23 personnel, or emergency medical technicians and 

24 paramedics, integrate training under the grant on 


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1 death scene investigation of SUID and SUDC into 

2 professional accreditation and training programs; 

3 ‘‘(5) in the case of State and local government 

4 entity grantees, obtain equipment, including com5 puter equipment, to aid in the completion of stand6 ard death scene investigation; or 

7 ‘‘(6) conduct training activities for medical ex8 aminers, coroners, and forensic pathologists con9 cerning standard autopsy protocols for sudden unex10 pected infant death and sudden unexplained death in 

11 childhood and integrate the training under the grant 

12 on standard autopsy protocols in SUID and SUDC 

13 into professional accreditation and training pro14 grams. 

15 ‘‘(d) AUTHORIZATION OF APPROPRIATIONS.—There 

16 is authorized to be appropriated to carry out this section 

17 $2,000,000 for each of fiscal years 2017 through 2021. 

18 ‘‘SEC. 399OO–3. INFANT AND CHILD DEATH REVIEW. 

19 ‘‘(a) PREVENTION.— 

20 ‘‘(1) CORE CAPACITY GRANTS.—The Secretary, 

21 acting through the Administrator, shall award 

22 grants to States to build and strengthen State ca23 pacity and implement State and local infant and 

24 child death review programs and prevention strate25 gies. 


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1 ‘‘(2) PLANNING GRANTS.—The Secretary, act2 ing through the Administrator, shall award planning 

3 grants to States that have no existing infant or child 

4 death review program or States in which the only in5 fant and child death review programs are State6 based, for the development of local infant and child 

7 death review programs and prevention strategies. 

8 ‘‘(3) APPLICATION.—To be eligible to receive a 

9 grant under paragraph (1) or (2), a State shall sub10 mit to the Secretary an application at such time, in 

11 such manner, and containing such information as 

12 the Secretary may require. 

13 ‘‘(4) TECHNICAL ASSISTANCE.—The Secretary, 

14 acting through the Administrator, shall provide tech15 nical assistance to assist States— 

16 ‘‘(A) in developing the capacity for com17 prehensive infant and child death review pro18 grams, including the development of best prac19 tices for the implementation of such programs; 

20 and 

21 ‘‘(B) in maintaining the national infant 

22 and child death case reporting system. 

23 ‘‘(b) AUTHORIZATION OF APPROPRIATIONS.—There 

24 is authorized to be appropriated $7,000,000 for each of 


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1 fiscal years 2017 through 2021 to carry out subsection 

2 (a). 

3 ‘‘SEC. 399OO–4. GRANTS FOR SUPPORT SERVICES. 

4 ‘‘(a) IN GENERAL.—The Secretary, acting through 

5 the Administrator, shall award grants to national organi6 zations, State and local health departments, community7 based organizations, and nonprofit organizations for the 

8 provisions of support services to families who have had 

9 a child die of sudden unexpected infant death and sudden 

10 unexplained death in childhood. 

11 ‘‘(b) APPLICATION.—To be eligible to receive a grant 

12 under subsection (a), an entity shall submit to the Sec13 retary an application at such time, in such manner, and 

14 containing such information as the Secretary may require. 

15 ‘‘(c) USE OF FUNDS.—Amounts received under a 

16 grant awarded under subsection (a) may be used to pro17 vide grief counseling, education, home visits, 24-hour hot18 lines, ensure access to grief and bereavement services, 

19 build capacity in professionals working with families who 

20 experience a sudden death, and support groups for fami21 lies who have lost a child to sudden unexpected infant 

22 death or sudden unexplained death in childhood. 

23 ‘‘(d) PREFERENCE.—In awarding grants under sub24 section (a), the Secretary shall give preference to commu25 nity-based applicants that have a proven history of effecVerDate Sep 11 2014 23:50 Feb 16, 2016 Jkt 059200 PO 00000 Frm 00012 Fmt 6652 Sfmt 6201 E:\BILLS\H4571.IH H4571

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1 tive direct support services and interventions for sudden 

2 unexpected infant death and sudden unexplained death in 

3 childhood and can demonstrate experience through col4 laborations and partnerships for delivering services 

5 throughout a State or region. 

6 ‘‘(e) AUTHORIZATION OF APPROPRIATIONS.—There 

7 is authorized to be appropriated to carry out this section 

8 $1,000,000 for each of fiscal years 2017 through 2021. 

9 ‘‘SEC. 399OO–5. EVALUATION OF STATE AND REGIONAL 

10 NEEDS. 

11 ‘‘(a) IN GENERAL.—The Secretary, acting through 

12 the Director and in consultation with the Administrator, 

13 shall conduct a needs assessment on a State and regional 

14 basis of the availability of personnel, training, technical 

15 assistance, and resources for investigating and deter16 mining sudden unexpected infant death and sudden unex17 plained death in childhood and make recommendations to 

18 increase collaboration on a State and regional level for in19 vestigation and determination. 

20 ‘‘(b) AUTHORIZATION OF APPROPRIATIONS.—There 

21 is authorized to be appropriated to carry out this section 

22 $250,000 for each of fiscal years 2017 through 2021.’’. 


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1 SEC. 4. ENHANCING PUBLIC HEALTH ACTIVITIES RELATED 

2 TO STILLBIRTH. 

3 Part P of title III of the Public Health Service Act 

4 (42 U.S.C. 280g et seq.) is amended by adding at the end 

5 the following: 

6 ‘‘SEC. 399V–6. ENHANCING PUBLIC HEALTH ACTIVITIES RE7 LATED TO STILLBIRTH. 

8 ‘‘(a) GRANTS.—The Secretary, acting through the 

9 Director of the Centers for Disease Control and Preven10 tion, shall award grants to eligible States to enhance and 

11 expand surveillance efforts to collect thorough and com12 plete epidemiologic information on stillbirths, including 

13 through the utilization of the infrastructure of existing 

14 surveillance systems (including vital statistics systems). 

15 ‘‘(b) ELIGIBILITY.—To be eligible to receive a grant 

16 under subsection (a), an entity shall— 

17 ‘‘(1) be a State; and 

18 ‘‘(2) submit to the Secretary an application at 

19 such time, in such manner, and containing such in20 formation as the Secretary may require, including— 

21 ‘‘(A) an assurance that the applicant will 

22 implement the standardized surveillance pro23 tocol developed under subsection (c); and 

24 ‘‘(B) a description of the infrastructure of 

25 existing surveillance systems in the State. 


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1 ‘‘(c) SURVEILLANCE PROTOCOL.—The Secretary, 

2 acting through the Director of the Centers for Disease 

3 Control and Prevention, shall— 

4 ‘‘(1) provide for the continued development and 

5 dissemination of a standard protocol for stillbirth 

6 data collection and surveillance, in consultation with 

7 representatives of health and advocacy organizations, 

8 State and local governments, and other interested 

9 entities determined appropriate by the Secretary; 

10 ‘‘(2) monitor trends and identify potential risk 

11 factors for further study using existing sources of 

12 surveillance data and expanded sources of data from 

13 targeted surveillance efforts, and methods for the 

14 evaluation of stillbirth prevention efforts; and 

15 ‘‘(3) develop and evaluate methods to link exist16 ing data to provide more complete information for 

17 research into the causes and conditions associated 

18 with stillbirth. 

19 ‘‘(d) POSTMORTEM EVALUATION AND DATA COLLEC20 TION.—The Secretary, acting through the Director of the 

21 Centers for Disease Control and Prevention and in con22 sultation with physicians, nurses, pathologists, geneticists, 

23 parents, and other groups determined necessary by the Di24 rector, shall develop guidelines for increasing the perform25 ance and data collection of postmortem stillbirth evaluaVerDate Sep 11 2014 23:50 Feb 16, 2016 Jkt 059200 PO 00000 Frm 00015 Fmt 6652 Sfmt 6201 E:\BILLS\H4571.IH H4571

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1 tion, including conducting and reimbursing autopsies, pla2 cental histopathology, and cytogenetic testing. The guide3 lines should take into account cultural competency issues 

4 related to postmortem stillbirth evaluation. 

5 ‘‘(e) PUBLIC HEALTH PROGRAMMATIC ACTIVITIES

6 RELATED TO STILLBIRTH.—The Secretary, acting 

7 through the Director of the Centers for Disease Control 

8 and Prevention, shall— 

9 ‘‘(1) develop behavioral surveys for women ex10 periencing stillbirth, using existing State-based in11 frastructure for pregnancy-related information gath12 ering; 

13 ‘‘(2) increase the technical assistance provided 

14 to States, Indian tribes, territories, and local com15 munities to enhance capacity for improved investiga16 tion of medical and social factors surrounding still17 birth events; and 

18 ‘‘(3) establish best practices for home visits 

19 after the death of a child, using existing standards 

20 for such best practices, as available. 

21 ‘‘(f) PUBLIC EDUCATION AND PREVENTION PRO22 GRAMS.—The Secretary, acting through the Director of 

23 the Centers for Disease Control and Prevention and in 

24 consultation with health care providers, public health or25 ganizations, maternal and child health programs, parents, 


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1 and other groups deemed necessary by the Director, shall 

2 directly or through grants, cooperative agreements, or con3 tracts to eligible entities, develop and conduct evidence4 based public education and prevention programs aimed at 

5 reducing the occurrence of stillbirth overall and addressing 

6 the racial and ethnic disparities in its occurrence, includ7 ing— 

8 ‘‘(1) public education programs, services, and 

9 demonstrations which are designed to increase gen10 eral awareness of stillbirths; and 

11 ‘‘(2) the development of tools for the education 

12 of health professionals and women concerning the 

13 known risk factors for stillbirth, promotion of fetal 

14 movement awareness, and the importance of early 

15 and regular prenatal care to monitor the health and 

16 development of the fetus up to and during delivery. 

17 ‘‘(g) TASK FORCE.—The Secretary, in consultation 

18 with the Director of the National Institutes of Health, the 

19 Director of the Centers for Disease Control and Preven20 tion, and health care providers, researchers, parents, and 

21 other groups deemed necessary by the Directors, shall es22 tablish a task force to develop a national research plan 

23 to determine the causes of, and how to prevent, stillbirth. 

24 ‘‘(h) GRANTS FOR SUPPORT SERVICES.— 


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1 ‘‘(1) IN GENERAL.—The Secretary, acting 

2 through the Administrator of the Health Resources 

3 and Services Administration, shall award grants to 

4 national organizations, State and local health de5 partments, and community-based organizations, for 

6 the provisions of support services to families who 

7 have experienced stillbirth. 

8 ‘‘(2) APPLICATION.—To be eligible to receive a 

9 grant under paragraph (1), an entity shall submit to 

10 the Secretary an application at such time, in such 

11 manner, and containing such information as the Sec12 retary may require. 

13 ‘‘(3) USE OF FUNDS.—Amounts received under 

14 a grant awarded under paragraph (1) may be used 

15 to provide grief counseling, education, home visits, 

16 24-hour hotlines, ensure access to grief and bereave17 ment services, build capacity in professionals work18 ing with families who experience a sudden death, 

19 and support groups for families who have experi20 enced stillbirth. 

21 ‘‘(4) PREFERENCE.—In awarding grants under 

22 paragraph (1), the Secretary shall give preference to 

23 applicants that are community-based organizations 

24 that have a proven history of providing effective di25 rect support services and interventions related to 


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1 stillbirths and can demonstrate experience through 

2 collaborations and partnerships for delivering serv3 ices throughout a State or region. 

4 ‘‘(i) DEFINITIONS.—In this section: 

5 ‘‘(1) The term ‘State’ has the meaning given to 

6 such term in section 2, except that such term in7 cludes tribes and tribal organizations (as such terms 

8 are defined in section 4 of the Indian Self-Deter9 mination and Education Assistance Act). 

10 ‘‘(2) The term ‘stillbirth’ means a spontaneous, 

11 not induced, pregnancy loss 20 weeks or later after 

12 gestation, or if the age of the fetus is not known, 

13 then a fetus weighing 350 grams or more. 

14 ‘‘(j) AUTHORIZATION OF APPROPRIATIONS.—There 

15 is authorized to be appropriated to carry out this section 

16 $3,000,000 for each of fiscal years 2017 through 2021.’’. 

Æ 


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