II 

113TH CONGRESS 

2D SESSION S. 2746 

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 SENATE OF THE UNITED STATES 

JULY 31, 2014 

Mr. BROWN (for himself and Ms. AYOTTE) introduced the following bill; which 

was read twice and referred to the Committee on Health, Education, 

Labor, and Pensions 

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 ‘‘Sudden Unexpected 

5 Death Data Enhancement and Awareness Act’’. 


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1 SEC. 2. STILLBIRTH AND SUDDEN DEATHS IN THE YOUNG. 

2 The Public Health Service Act is amended by insert3 ing after section 317L of such Act (42 U.S.C. 247b–13) 

4 the following: 

5 ‘‘SEC. 317L–1. STILLBIRTH AND SUDDEN DEATHS IN THE 

6 YOUNG. 

7 ‘‘(a) STILLBIRTH ACTIVITIES.—The Secretary, act8 ing through the Director of the Centers for Disease Con9 trol and Prevention, shall continue to carry out activities 

10 of the Centers relating to stillbirth, including the fol11 lowing: 

12 ‘‘(1) SURVEILLANCE.— 

13 ‘‘(A) IN GENERAL.—The Secretary shall 

14 provide for surveillance efforts to collect thor15 ough, complete, and high-quality epidemiologic 

16 information on stillbirths, including through the 

17 utilization of existing surveillance systems (in18 cluding the National Vital Statistics System 

19 (NVSS) and other appropriately equipped birth 

20 defects surveillance programs). 

21 ‘‘(B) STANDARD PROTOCOL FOR SURVEIL22 LANCE.—The Secretary, in consultation with 

23 qualified individuals and organizations deter24 mined appropriate by the Secretary, to include 

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1 zations, State and local governments, public 

2 health officials, and health researchers, shall— 

3 ‘‘(i) provide for the continued develop4 ment and dissemination of a standard pro5 tocol for stillbirth data collection and sur6 veillance; and 

7 ‘‘(ii) not less than every 5 years, re8 view and, as appropriate, update such pro9 tocol. 

10 ‘‘(2) POSTMORTEM DATA COLLECTION AND

11 EVALUATION.—The Secretary, in consultation with 

12 qualified individuals and organizations determined 

13 appropriate by the Secretary, to include representa14 tives of health professional organizations, shall— 

15 ‘‘(A) upon the enactment of this section, 

16 and not less than every 5 years thereafter, re17 view existing guidelines for increasing and im18 proving the quality and completeness of post19 mortem stillbirth evaluation and related data 

20 collection, including conducting and reimburs21 ing autopsies, placental histopathology, and cy22 togenetic testing; and 

23 ‘‘(B) develop strategies for implementing 

24 such guidelines and addressing any barriers to 

25 implementation of such guidelines. 


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1 ‘‘(b) SUDDEN UNEXPECTED INFANT DEATH ACTIVI2 TIES.—The Secretary, acting through the Director of the 

3 Centers for Disease Control and Prevention, shall continue 

4 to carry out activities of the Centers relating to sudden 

5 unexpected infant death (SUID), including the following: 

6 ‘‘(1) SURVEILLANCE.— 

7 ‘‘(A) IN GENERAL.—The Secretary shall 

8 provide for surveillance efforts to gather 

9 sociodemographic, death scene investigation, 

10 clinical history, and autopsy information on 

11 SUID cases through the review of existing 

12 records on SUID, including through the utiliza13 tion of existing surveillance systems (including 

14 the national child death review case reporting 

15 system and SUID case registries). 

16 ‘‘(B) STANDARD PROTOCOL FOR SURVEIL17 LANCE.—The Secretary, in consultation with 

18 qualified individuals and organizations deter19 mined appropriate by the Secretary, to include 

20 representatives of health and advocacy organi21 zations, State and local governments, and pub22 lic health officials, shall— 

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1 tocol for SUID data reporting and surveil2 lance; and 

3 ‘‘(ii) not less than every 5 years, re4 view and, as appropriate, update such pro5 tocol. 

6 ‘‘(C) GOALS FOR ENHANCING SURVEIL7 LANCE.—In carrying out activities under this 

8 subsection, the Secretary shall seek to accom9 plish the following goals: 

10 ‘‘(i) Collecting thorough, complete, 

11 and high-quality death scene investigation 

12 data, clinical history, and autopsy findings. 

13 ‘‘(ii) Collecting standardized informa14 tion about the environmental and medical 

15 circumstances of death (including the sleep 

16 environment and quality of the death scene 

17 investigation). 

18 ‘‘(iii) Supporting multidisciplinary in19 fant death reviews, such as those per20 formed by child death review committees, 

21 to collect and review the information and 

22 classify and characterize SUID using a 

23 standardized classification system. 

24 ‘‘(iv) Facilitating the sharing of infor25 mation to improve the public reporting of 


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1 surveillance and vital statistics describing 

2 the epidemiology of SUID. 

3 ‘‘(2) STANDARD PROTOCOL FOR DEATH SCENE

4 INVESTIGATION.— 

5 ‘‘(A) IN GENERAL.—The Secretary, in con6 sultation with forensic pathologists, medical ex7 aminers, coroners, medicolegal death scene in8 vestigators, law enforcement personnel, emer9 gency medical technicians and paramedics, pub10 lic health agencies, and other individuals and 

11 organizations determined appropriate by the 

12 Secretary, shall— 

13 ‘‘(i) provide for the continued dissemi14 nation of a standard death scene investiga15 tion protocol; and 

16 ‘‘(ii) not less than every 5 years, re17 view and, as appropriate, update such pro18 tocol. 

19 ‘‘(B) CONTENT OF DEATH SCENE PRO20 TOCOL.—The protocol disseminated under sub21 paragraph (A) shall include information on— 

22 ‘‘(i) the current and past medical his23 tory of the infant; 

24 ‘‘(ii) family medical history; 


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1 ‘‘(iii) the circumstances surrounding 

2 the death, including any suspicious cir3 cumstances; 

4 ‘‘(iv) the sleep position and sleep envi5 ronment of the infant; and 

6 ‘‘(v) any accidental or environmental 

7 factors associated with death. 

8 ‘‘(3) GUIDELINES FOR A STANDARD AUTOPSY

9 PROTOCOL.—The Secretary, in consultation with the 

10 Attorney General of the United States, forensic pa11 thologists, medical examiners, coroners, pediatric pa12 thologists, pediatric cardiologists, pediatric 

13 neuropathologists, geneticists, infectious disease spe14 cialists, and other individuals and organizations de15 termined appropriate by the Secretary, shall— 

16 ‘‘(A) develop guidelines for a standard au17 topsy protocol for SUID; and 

18 ‘‘(B) not less than every 5 years, review 

19 and, as appropriate, update such guidelines. 

20 ‘‘(4) TRAINING.—The Secretary, in consultation 

21 with the Attorney General of the United States, 

22 may— 

23 ‘‘(A) conduct or support— 

24 ‘‘(i) training activities for medical ex25 aminers, coroners, medicolegal death scene 


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1 investigators, law enforcement personnel, 

2 and emergency medical technicians or 

3 paramedics concerning death scene inves4 tigations for SUID, including the use of 

5 standard death scene investigation proto6 cols disseminated under paragraph (2); 

7 and 

8 ‘‘(ii) training activities for medical ex9 aminers, coroners, and forensic patholo10 gists concerning standard autopsy proto11 cols for SUID developed under paragraph 

12 (3); and 

13 ‘‘(B) make recommendations to health pro14 fessional organizations regarding the integra15 tion of protocols disseminated or developed 

16 under this subsection, and training conducted 

17 or supported under this paragraph, into exist18 ing training and continuing education pro19 grams. 

20 ‘‘(c) SUDDEN UNEXPLAINED DEATH IN CHILDHOOD

21 ACTIVITIES.—The Secretary, acting through the Director 

22 of the Centers for Disease Control and Prevention, shall 

23 continue to carry out activities of the Centers relating to 

24 sudden unexpected death in childhood (SUDC), including 

25 the following: 


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1 ‘‘(1) SURVEILLANCE.—The Secretary, in con2 sultation with the Director of the National Institutes 

3 of Health, shall provide for surveillance efforts to 

4 gather sociodemographic, death scene investigation, 

5 clinical history, and autopsy information on SUDC 

6 cases through the review of existing records on 

7 SUDC, including through the utilization of existing 

8 surveillance systems (including the Sudden Death in 

9 the Young Registry). 

10 ‘‘(2) GUIDELINES FOR A STANDARD AUTOPSY

11 PROTOCOL.—The Secretary, in consultation with the 

12 Attorney General of the United States, forensic pa13 thologists, medical examiners, coroners, pediatric pa14 thologists, pediatric cardiologists, pediatric 

15 neuropathologists, geneticists, infectious disease spe16 cialists, and other individuals and organizations de17 termined appropriate by the Secretary, may— 

18 ‘‘(A) develop guidelines for a standard au19 topsy protocol for SUDC; and 

20 ‘‘(B) not less than every 5 years, review 

21 and, as appropriate, update such guidelines. 

22 ‘‘(3) REVIEW OF APPLICABILITY OF PROGRAMS

23 AND ACTIVITIES.—Not later than 18 months after 

24 the date of enactment of this section, the Secretary, 

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1 ease Control and Prevention, and in consultation 

2 with the Director of the National Institutes of 

3 Health, shall complete an evaluation of the possi4 bility of carrying out or intensifying, with respect to 

5 SUDC, the types of programs and activities that are 

6 authorized to be carried out under subsection (b) 

7 with respect to SUID. 

8 ‘‘(d) REPORT TO CONGRESS.—Not later than 2 years 

9 after the date of enactment of this Act, the Secretary, act10 ing through the Director of the Centers for Disease Con11 trol and Prevention, shall submit to the Congress a report 

12 on the implementation of this section. Such report shall 

13 include— 

14 ‘‘(1) the results of the evaluation under sub15 section (c)(3); and 

16 ‘‘(2) a description of any activities that— 

17 ‘‘(A) are being carried out by the Centers 

18 for Disease Control and Prevention in consulta19 tion with the National Institutes of Health re20 lating to stillbirth, SUID, or SUDC; and 

21 ‘‘(B) are in addition to the activities being 

22 carried out pursuant to this section. 

23 ‘‘(e) DEFINITIONS.—In this section: 

24 ‘‘(1) The term ‘stillbirth’ means a spontaneous 

25 fetal death that— 


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1 ‘‘(A) occurs at 20 or more weeks gestation; 

2 or 

3 ‘‘(B) if the age of the fetus is not known, 

4 involves a fetus weighing 350 grams or more. 

5 ‘‘(2) The terms ‘sudden unexpected infant 

6 death’ and ‘SUID’ mean the death of an infant less 

7 than 1 year of age— 

8 ‘‘(A) which occurs suddenly and unexpect9 edly; and 

10 ‘‘(B) whose cause— 

11 ‘‘(i) is not immediately obvious prior 

12 to investigation; and 

13 ‘‘(ii) is either explained upon inves14 tigation or remains unexplained. 

15 ‘‘(3) The terms ‘sudden unexplained death in 

16 childhood’ and ‘SUDC’ mean the sudden death of a 

17 child 1 year of age or older which remains unex18 plained after a thorough case investigation that in19 cludes— 

20 ‘‘(A) a review of the clinical history and 

21 circumstances of death; and 

22 ‘‘(B) performance of a complete autopsy 

23 with appropriate ancillary testing. 


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1 ‘‘(f) FUNDING.—This section shall not be construed 

2 to increase the amount of appropriations that are author3 ized to be appropriated for any fiscal year.’’. 

Æ 


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