IIB 

113TH CONGRESS 

2D SESSION H. R. 669 

IN THE SENATE OF THE UNITED STATES 

SEPTEMBER 10, 2014 

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 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, 


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1 SECTION 1. SHORT TITLE. 

2 This Act may be cited as the ‘‘Sudden Unexpected 

3 Death Data Enhancement and Awareness Act’’. 

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

5 The Public Health Service Act is amended by insert6 ing after section 317L of such Act (42 U.S.C. 247b–13) 

7 the following: 

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

9 YOUNG. 

10 ‘‘(a) STILLBIRTH ACTIVITIES.—The Secretary, act11 ing through the Director of the Centers for Disease Con12 trol and Prevention, shall continue to carry out activities 

13 of the Centers relating to stillbirth, including the fol14 lowing: 

15 ‘‘(1) SURVEILLANCE.— 

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

17 provide for surveillance efforts to collect thor18 ough, complete, and high-quality epidemiologic 

19 information on stillbirths, including through the 

20 utilization of existing surveillance systems (in21 cluding the National Vital Statistics System 

22 (NVSS) and other appropriately equipped birth 

23 defects surveillance programs). 

24 ‘‘(B) STANDARD PROTOCOL FOR SURVEIL25 LANCE.—The Secretary, in consultation with 

26 qualified individuals and organizations deterVerDate Mar 15 2010 22:26 Sep 10, 2014 Jkt 039200 PO 00000 Frm 00002 Fmt 6652 Sfmt 6201 E:\BILLS\H669.RFS H669

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1 mined appropriate by the Secretary, to include 

2 representatives of health and advocacy organi3 zations, State and local governments, public 

4 health officials, and health researchers, shall— 

5 ‘‘(i) provide for the continued develop6 ment and dissemination of a standard pro7 tocol for stillbirth data collection and sur8 veillance; and 

9 ‘‘(ii) not less than every 5 years, re10 view and, as appropriate, update such pro11 tocol. 

12 ‘‘(2) POSTMORTEM DATA COLLECTION AND

13 EVALUATION.—The Secretary, in consultation with 

14 qualified individuals and organizations determined 

15 appropriate by the Secretary, to include representa16 tives of health professional organizations, shall— 

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

18 and not less than every 5 years thereafter, re19 view existing guidelines for increasing and im20 proving the quality and completeness of post21 mortem stillbirth evaluation and related data 

22 collection, including conducting and reimburs23 ing autopsies, placental histopathology, and cy24 togenetic testing; and 


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1 ‘‘(B) develop strategies for implementing 

2 such guidelines and addressing any barriers to 

3 implementation of such guidelines. 

4 ‘‘(b) SUDDEN UNEXPECTED INFANT DEATH ACTIVI5 TIES.—The Secretary, acting through the Director of the 

6 Centers for Disease Control and Prevention, shall continue 

7 to carry out activities of the Centers relating to sudden 

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

9 ‘‘(1) SURVEILLANCE.— 

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

11 provide for surveillance efforts to gather 

12 sociodemographic, death scene investigation, 

13 clinical history, and autopsy information on 

14 SUID cases through the review of existing 

15 records on SUID, including through the utiliza16 tion of existing surveillance systems (including 

17 the national child death review case reporting 

18 system and SUID case registries). 

19 ‘‘(B) STANDARD PROTOCOL FOR SURVEIL20 LANCE.—The Secretary, in consultation with 

21 qualified individuals and organizations deter22 mined appropriate by the Secretary, to include 

23 representatives of health and advocacy organi24 zations, State and local governments, and pub25 lic health officials, shall— 


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1 ‘‘(i) provide for the continued develop2 ment and dissemination of a standard pro3 tocol for SUID data reporting and surveil4 lance; and 

5 ‘‘(ii) not less than every 5 years, re6 view and, as appropriate, update such pro7 tocol. 

8 ‘‘(C) GOALS FOR ENHANCING SURVEIL9 LANCE.—In carrying out activities under this 

10 subsection, the Secretary shall seek to accom11 plish the following goals: 

12 ‘‘(i) Collecting thorough, complete, 

13 and high-quality death scene investigation 

14 data, clinical history, and autopsy findings. 

15 ‘‘(ii) Collecting standardized informa16 tion about the environmental and medical 

17 circumstances of death (including the sleep 

18 environment and quality of the death scene 

19 investigation). 

20 ‘‘(iii) Supporting multidisciplinary in21 fant death reviews, such as those per22 formed by child death review committees, 

23 to collect and review the information and 

24 classify and characterize SUID using a 

25 standardized classification system. 


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1 ‘‘(iv) Facilitating the sharing of infor2 mation to improve the public reporting of 

3 surveillance and vital statistics describing 

4 the epidemiology of SUID. 

5 ‘‘(2) STANDARD PROTOCOL FOR DEATH SCENE

6 INVESTIGATION.— 

7 ‘‘(A) IN GENERAL.—The Secretary, in con8 sultation with forensic pathologists, medical ex9 aminers, coroners, medicolegal death scene in10 vestigators, law enforcement personnel, emer11 gency medical technicians and paramedics, pub12 lic health agencies, and other individuals and 

13 organizations determined appropriate by the 

14 Secretary, shall— 

15 ‘‘(i) provide for the continued dissemi16 nation of a standard death scene investiga17 tion protocol; and 

18 ‘‘(ii) not less than every 5 years, re19 view and, as appropriate, update such pro20 tocol. 

21 ‘‘(B) CONTENT OF DEATH SCENE PRO22 TOCOL.—The protocol disseminated under sub23 paragraph (A) shall include information on— 

24 ‘‘(i) the current and past medical his25 tory of the infant; 


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1 ‘‘(ii) family medical history; 

2 ‘‘(iii) the circumstances surrounding 

3 the death, including any suspicious cir4 cumstances; 

5 ‘‘(iv) the sleep position and sleep envi6 ronment of the infant; and 

7 ‘‘(v) any accidental or environmental 

8 factors associated with death. 

9 ‘‘(3) GUIDELINES FOR A STANDARD AUTOPSY

10 PROTOCOL.—The Secretary, in consultation with the 

11 Attorney General of the United States, forensic pa12 thologists, medical examiners, coroners, pediatric pa13 thologists, pediatric cardiologists, pediatric 

14 neuropathologists, geneticists, infectious disease spe15 cialists, and other individuals and organizations de16 termined appropriate by the Secretary, shall— 

17 ‘‘(A) develop guidelines for a standard au18 topsy protocol for SUID; and 

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

20 and, as appropriate, update such guidelines. 

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

22 with the Attorney General of the United States, 

23 may— 

24 ‘‘(A) conduct or support— 


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1 ‘‘(i) training activities for medical ex2 aminers, coroners, medicolegal death scene 

3 investigators, law enforcement personnel, 

4 and emergency medical technicians or 

5 paramedics concerning death scene inves6 tigations for SUID, including the use of 

7 standard death scene investigation proto8 cols disseminated under paragraph (2); 

9 and 

10 ‘‘(ii) training activities for medical ex11 aminers, coroners, and forensic patholo12 gists concerning standard autopsy proto13 cols for SUID developed under paragraph 

14 (3); and 

15 ‘‘(B) make recommendations to health pro16 fessional organizations regarding the integra17 tion of protocols disseminated or developed 

18 under this subsection, and training conducted 

19 or supported under this paragraph, into exist20 ing training and continuing education pro21 grams. 

22 ‘‘(c) SUDDEN UNEXPLAINED DEATH IN CHILDHOOD

23 ACTIVITIES.—The Secretary, acting through the Director 

24 of the Centers for Disease Control and Prevention, shall 

25 continue to carry out activities of the Centers relating to 


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1 sudden unexpected death in childhood (SUDC), including 

2 the following: 

3 ‘‘(1) SURVEILLANCE.—The Secretary, in con4 sultation with the Director of the National Institutes 

5 of Health, shall provide for surveillance efforts to 

6 gather sociodemographic, death scene investigation, 

7 clinical history, and autopsy information on SUDC 

8 cases through the review of existing records on 

9 SUDC, including through the utilization of existing 

10 surveillance systems (including the Sudden Death in 

11 the Young Registry). 

12 ‘‘(2) GUIDELINES FOR A STANDARD AUTOPSY

13 PROTOCOL.—The Secretary, in consultation with the 

14 Attorney General of the United States, forensic pa15 thologists, medical examiners, coroners, pediatric pa16 thologists, pediatric cardiologists, pediatric 

17 neuropathologists, geneticists, infectious disease spe18 cialists, and other individuals and organizations de19 termined appropriate by the Secretary, may— 

20 ‘‘(A) develop guidelines for a standard au21 topsy protocol for SUDC; and 

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

23 and, as appropriate, update such guidelines. 

24 ‘‘(3) REVIEW OF APPLICABILITY OF PROGRAMS

25 AND ACTIVITIES.—Not later than 18 months after 


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

2 acting through the Director of the Centers for Dis3 ease Control and Prevention, and in consultation 

4 with the Director of the National Institutes of 

5 Health, shall complete an evaluation of the possi6 bility of carrying out or intensifying, with respect to 

7 SUDC, the types of programs and activities that are 

8 authorized to be carried out under subsection (b) 

9 with respect to SUID. 

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

11 after the date of enactment of this Act, the Secretary, act12 ing through the Director of the Centers for Disease Con13 trol and Prevention, shall submit to the Congress a report 

14 on the implementation of this section. Such report shall 

15 include— 

16 ‘‘(1) the results of the evaluation under sub17 section (c)(3); and 

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

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

20 for Disease Control and Prevention in consulta21 tion with the National Institutes of Health re22 lating to stillbirth, SUID, or SUDC; and 

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

24 carried out pursuant to this section. 

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


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

2 fetal death that— 

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

4 or 

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

6 involves a fetus weighing 350 grams or more. 

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

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

9 than 1 year of age— 

10 ‘‘(A) which occurs suddenly and unexpect11 edly; and 

12 ‘‘(B) whose cause— 

13 ‘‘(i) is not immediately obvious prior 

14 to investigation; and 

15 ‘‘(ii) is either explained upon inves16 tigation or remains unexplained. 

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

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

19 child 1 year of age or older which remains unex20 plained after a thorough case investigation that in21 cludes— 

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

23 circumstances of death; and 

24 ‘‘(B) performance of a complete autopsy 

25 with appropriate ancillary testing. 


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1 ‘‘(f) FUNDING.—No additional funds are authorized 

2 to be appropriated for the purpose of carrying out this 

3 section, and this section shall be carried out using 

4 amounts otherwise available for such purpose.’’. 

Passed the House of Representatives September 9, 

2014. 

Attest: KAREN L. HAAS, 

Clerk. 


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