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Union Calendar No. 417 

113TH CONGRESS 

2D SESSION H. R. 669 

[Report No. 113–557] 

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 13, 2013 

Mr. PALLONE (for himself and Mr. KING of New York) introduced the 

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

JULY 24, 2014 

Additional sponsors: Ms. SPEIER, Mr. RANGEL, Mr. CONNOLLY, Mrs. CAROLYN B. MALONEY of New York, Ms. BROWNLEY of California, Ms. 

KUSTER, Mr. CRAWFORD, Mrs. MCCARTHY of New York, Mr. VAN HOLLEN, Mr. MORAN, Mr. JONES, Mr. SCHIFF, Mr. GRIJALVA, Mr. HASTINGS of Florida, Ms. SCHAKOWSKY, Mrs. CHRISTENSEN, Mr. ELLISON, 

Ms. MATSUI, and Mr. CICILLINE

JULY 24, 2014 

Reported with an amendment, committed to the Committee of the Whole 

House on the State of the Union, and ordered to be printed 

[Strike out all after the enacting clause and insert the part printed in italic] 

[For text of introduced bill, see copy of bill as introduced on February 13, 2013] 

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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. 

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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’’. 

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

7 The Public Health Service Act is amended by inserting 

8 after section 317L of such Act (42 U.S.C. 247b–13) the fol9 lowing: 

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

11 YOUNG. 

12 ‘‘(a) STILLBIRTH ACTIVITIES.—The Secretary, acting 

13 through the Director of the Centers for Disease Control and 

14 Prevention, shall continue to carry out activities of the Cen15 ters relating to stillbirth, including the following: 

16 ‘‘(1) SURVEILLANCE.— 

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

18 provide for surveillance efforts to collect thor19 ough, complete, and high-quality epidemiologic 

20 information on stillbirths, including through the 

21 utilization of existing surveillance systems (in22 cluding the National Vital Statistics System 

23 (NVSS) and other appropriately equipped birth 

24 defects surveillance programs). 

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1 ‘‘(B) STANDARD PROTOCOL FOR SURVEIL2 LANCE.—The Secretary, in consultation with 

3 qualified individuals and organizations deter4 mined appropriate by the Secretary, to include 

5 representatives of health and advocacy organiza6 tions, State and local governments, public health 

7 officials, and health researchers, shall— 

8 ‘‘(i) provide for the continued develop9 ment and dissemination of a standard pro10 tocol for stillbirth data collection and sur11 veillance; and 

12 ‘‘(ii) not less than every 5 years, re13 view and, as appropriate, update such pro14 tocol. 

15 ‘‘(2) POSTMORTEM DATA COLLECTION AND EVAL16 UATION.—The Secretary, in consultation with quali17 fied individuals and organizations determined appro18 priate by the Secretary, to include representatives of 

19 health professional organizations, shall— 

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

21 and not less than every 5 years thereafter, review 

22 existing guidelines for increasing and improving 

23 the quality and completeness of postmortem still24 birth evaluation and related data collection, in25 cluding conducting and reimbursing autopsies, 

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1 placental histopathology, and cytogenetic testing; 

2 and 

3 ‘‘(B) develop strategies for implementing 

4 such guidelines and addressing any barriers to 

5 implementation of such guidelines. 

6 ‘‘(b) SUDDEN UNEXPECTED INFANT DEATH ACTIVI7 TIES.—The Secretary, acting through the Director of the 

8 Centers for Disease Control and Prevention, shall continue 

9 to carry out activities of the Centers relating to sudden un10 expected infant death (SUID), including the following: 

11 ‘‘(1) SURVEILLANCE.— 

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

13 provide for surveillance efforts to gather 

14 sociodemographic, death scene investigation, clin15 ical history, and autopsy information on SUID 

16 cases through the review of existing records on 

17 SUID, including through the utilization of exist18 ing surveillance systems (including the national 

19 child death review case reporting system and 

20 SUID case registries). 

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 tions, State and local governments, and public 

2 health officials, shall— 

3 ‘‘(i) provide for the continued develop4 ment and dissemination of a standard pro5 tocol for SUID data reporting and surveil6 lance; and 

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

10 ‘‘(C) GOALS FOR ENHANCING SURVEIL11 LANCE.—In carrying out activities under this 

12 subsection, the Secretary shall seek to accomplish 

13 the following goals: 

14 ‘‘(i) Collecting thorough, complete, and 

15 high-quality death scene investigation data, 

16 clinical history, and autopsy findings. 

17 ‘‘(ii) Collecting standardized informa18 tion about the environmental and medical 

19 circumstances of death (including the sleep 

20 environment and quality of the death scene 

21 investigation). 

22 ‘‘(iii) Supporting multidisciplinary 

23 infant death reviews, such as those per24 formed by child death review committees, to 

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1 sify and characterize SUID using a stand2 ardized classification system. 

3 ‘‘(iv) Facilitating the sharing of infor4 mation to improve the public reporting of 

5 surveillance and vital statistics describing 

6 the epidemiology of SUID. 

7 ‘‘(2) STANDARD PROTOCOL FOR DEATH SCENE

8 INVESTIGATION.— 

9 ‘‘(A) IN GENERAL.—The Secretary, in con10 sultation with forensic pathologists, medical ex11 aminers, coroners, medicolegal death scene inves12 tigators, law enforcement personnel, emergency 

13 medical technicians and paramedics, public 

14 health agencies, and other individuals and orga15 nizations determined appropriate by the Sec16 retary, shall— 

17 ‘‘(i) provide for the continued dissemi18 nation of a standard death scene investiga19 tion protocol; and 

20 ‘‘(ii) not less than every 5 years, re21 view and, as appropriate, update such pro22 tocol. 

23 ‘‘(B) CONTENT OF DEATH SCENE PRO24 TOCOL.—The protocol disseminated under sub25 paragraph (A) shall include information on— 

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1 ‘‘(i) the current and past medical his2 tory of the infant; 

3 ‘‘(ii) family medical history; 

4 ‘‘(iii) the circumstances surrounding 

5 the death, including any suspicious cir6 cumstances; 

7 ‘‘(iv) the sleep position and sleep envi8 ronment of the infant; and 

9 ‘‘(v) any accidental or environmental 

10 factors associated with death. 

11 ‘‘(3) GUIDELINES FOR A STANDARD AUTOPSY

12 PROTOCOL.—The Secretary, in consultation with the 

13 Attorney General of the United States, forensic pa14 thologists, medical examiners, coroners, pediatric pa15 thologists, pediatric cardiologists, pediatric 

16 neuropathologists, geneticists, infectious disease spe17 cialists, and other individuals and organizations de18 termined appropriate by the Secretary, shall— 

19 ‘‘(A) develop guidelines for a standard au20 topsy protocol for SUID; and 

21 ‘‘(C) not less than every 5 years, review 

22 and, as appropriate, update such guidelines. 

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

24 with the Attorney General of the United States, 

25 may— 

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1 ‘‘(A) conduct or support— 

2 ‘‘(i) training activities for medical ex3 aminers, coroners, medicolegal death scene 

4 investigators, law enforcement personnel, 

5 and emergency medical technicians or para6 medics concerning death scene investiga7 tions for SUID, including the use of stand8 ard death scene investigation protocols dis9 seminated under paragraph (2); and 

10 ‘‘(ii) training activities for medical ex11 aminers, coroners, and forensic pathologists 

12 concerning standard autopsy protocols for 

13 SUID developed under paragraph (3); and 

14 ‘‘(B) make recommendations to health pro15 fessional organizations regarding the integration 

16 of protocols disseminated or developed under this 

17 subsection, and training conducted or supported 

18 under this paragraph, into existing training and 

19 continuing education programs. 

20 ‘‘(c) SUDDEN UNEXPLAINED DEATH IN CHILDHOOD

21 ACTIVITIES.—The Secretary, acting through the Director of 

22 the Centers for Disease Control and Prevention, shall con23 tinue to carry out activities of the Centers relating to sud24 den unexpected death in childhood (SUDC), including the 

25 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 SUDC, 

7 including through the utilization of existing surveil8 lance systems (including the Sudden Death in the 

9 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 the 

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

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1 trol and Prevention, and in consultation with the Di2 rector of the National Institutes of Health, shall com3 plete an evaluation of the possibility of carrying out 

4 or intensifying, with respect to SUDC, the types of 

5 programs and activities that are authorized to be car6 ried out under subsection (b) with respect to SUID. 

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

8 after the date of enactment of this Act, the Secretary, acting 

9 through the Director of the Centers for Disease Control and 

10 Prevention, shall submit to the Congress a report on the 

11 implementation of this section. Such report shall include— 

12 ‘‘(1) the results of the evaluation under sub13 section (c)(3); and 

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

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

16 for Disease Control and Prevention in consulta17 tion with the National Institutes of Health relat18 ing to stillbirth, SUID, or SUDC; and 

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

20 carried out pursuant to this section. 

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

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

23 fetal death that— 

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

25 or 

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1 ‘‘(B) if the age of the fetus is not known, in2 volves a fetus weighing 350 grams or more. 

3 ‘‘(2) The terms ‘sudden unexpected infant death’ 

4 and ‘SUID’ mean the death of an infant less than 1 

5 year of age— 

6 ‘‘(A) which occurs suddenly and unexpect7 edly; and 

8 ‘‘(B) whose cause— 

9 ‘‘(i) is not immediately obvious prior 

10 to investigation; and 

11 ‘‘(ii) is either explained upon inves12 tigation or remains unexplained. 

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

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

15 child 1 year of age or older which remains unex16 plained after a thorough case investigation that in17 cludes— 

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

19 circumstances of death; and 

20 ‘‘(B) performance of a complete autopsy 

21 with appropriate ancillary testing. 

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

23 increase the amount of appropriations that are authorized 

24 to be appropriated for any fiscal year.’’. 

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Union Calendar No. 417 

113TH CONGRESS 

2D SESSION H. R. 669 

[Report No. 113–557] 

A BILL 

To amend the Public Health Service Act to improve 

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

JULY 24, 2014 

Reported with an amendment, committed to the Comand ordered to be printed mittee of the Whole House on the State of the Union, 

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