[Congressional Record Volume 160, Number 128 (Tuesday, September 9, 2014)]
[House]
[Pages H7341-H7343]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




       SUDDEN UNEXPECTED DEATH DATA ENHANCEMENT AND AWARENESS ACT

  Mr. BURGESS. Mr. Speaker, I move to suspend the rules and pass the 
bill (H.R. 669) 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, as amended.
  The Clerk read the title of the bill.
  The text of the bill is as follows:

                                H.R. 669

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

     SECTION 1. SHORT TITLE.

       This Act may be cited as the ``Sudden Unexpected Death Data 
     Enhancement and Awareness Act''.

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

       The Public Health Service Act is amended by inserting after 
     section 317L of such Act (42 U.S.C. 247b-13) the following:

     ``SEC. 317L-1. STILLBIRTH AND SUDDEN DEATHS IN THE YOUNG.

       ``(a) Stillbirth Activities.--The Secretary, acting through 
     the Director of the Centers for Disease Control and 
     Prevention, shall continue to carry out activities of the 
     Centers relating to stillbirth, including the following:
       ``(1) Surveillance.--
       ``(A) In general.--The Secretary shall provide for 
     surveillance efforts to collect thorough, complete, and high-
     quality epidemiologic information on stillbirths, including 
     through the utilization of existing surveillance systems 
     (including the National Vital Statistics System (NVSS) and 
     other appropriately equipped birth defects surveillance 
     programs).
       ``(B) Standard protocol for surveillance.--The Secretary, 
     in consultation with qualified individuals and organizations 
     determined appropriate by the Secretary, to include 
     representatives of health and advocacy organizations, State 
     and local governments, public health officials, and health 
     researchers, shall--
       ``(i) provide for the continued development and 
     dissemination of a standard protocol for stillbirth data 
     collection and surveillance; and
       ``(ii) not less than every 5 years, review and, as 
     appropriate, update such protocol.
       ``(2) Postmortem data collection and evaluation.--The 
     Secretary, in consultation with qualified individuals and 
     organizations determined appropriate by the Secretary, to 
     include representatives of health professional organizations, 
     shall--
       ``(A) upon the enactment of this section, and not less than 
     every 5 years thereafter, review existing guidelines for 
     increasing and improving the quality and completeness of 
     postmortem stillbirth evaluation and related data collection, 
     including conducting and reimbursing autopsies, placental 
     histopathology, and cytogenetic testing; and
       ``(B) develop strategies for implementing such guidelines 
     and addressing any barriers to implementation of such 
     guidelines.
       ``(b) Sudden Unexpected Infant Death Activities.--The 
     Secretary, acting through the Director of the Centers for 
     Disease Control and Prevention, shall continue to carry out 
     activities of the Centers relating to sudden unexpected 
     infant death (SUID), including the following:
       ``(1) Surveillance.--
       ``(A) In general.--The Secretary shall provide for 
     surveillance efforts to gather sociodemographic, death scene 
     investigation, clinical history, and autopsy information on 
     SUID cases through the review of existing records on SUID, 
     including through the utilization of existing surveillance 
     systems (including the national child death review case 
     reporting system and SUID case registries).
       ``(B) Standard protocol for surveillance.--The Secretary, 
     in consultation with

[[Page H7342]]

     qualified individuals and organizations determined 
     appropriate by the Secretary, to include representatives of 
     health and advocacy organizations, State and local 
     governments, and public health officials, shall--
       ``(i) provide for the continued development and 
     dissemination of a standard protocol for SUID data reporting 
     and surveillance; and
       ``(ii) not less than every 5 years, review and, as 
     appropriate, update such protocol.
       ``(C) Goals for enhancing surveillance.--In carrying out 
     activities under this subsection, the Secretary shall seek to 
     accomplish the following goals:
       ``(i) Collecting thorough, complete, and high-quality death 
     scene investigation data, clinical history, and autopsy 
     findings.
       ``(ii) Collecting standardized information about the 
     environmental and medical circumstances of death (including 
     the sleep environment and quality of the death scene 
     investigation).
       ``(iii) Supporting multidisciplinary infant death reviews, 
     such as those performed by child death review committees, to 
     collect and review the information and classify and 
     characterize SUID using a standardized classification system.
       ``(iv) Facilitating the sharing of information to improve 
     the public reporting of surveillance and vital statistics 
     describing the epidemiology of SUID.
       ``(2) Standard protocol for death scene investigation.--
       ``(A) In general.--The Secretary, in consultation with 
     forensic pathologists, medical examiners, coroners, 
     medicolegal death scene investigators, law enforcement 
     personnel, emergency medical technicians and paramedics, 
     public health agencies, and other individuals and 
     organizations determined appropriate by the Secretary, 
     shall--
       ``(i) provide for the continued dissemination of a standard 
     death scene investigation protocol; and
       ``(ii) not less than every 5 years, review and, as 
     appropriate, update such protocol.
       ``(B) Content of death scene protocol.--The protocol 
     disseminated under subparagraph (A) shall include information 
     on--
       ``(i) the current and past medical history of the infant;
       ``(ii) family medical history;
       ``(iii) the circumstances surrounding the death, including 
     any suspicious circumstances;
       ``(iv) the sleep position and sleep environment of the 
     infant; and
       ``(v) any accidental or environmental factors associated 
     with death.
       ``(3) Guidelines for a standard autopsy protocol.--The 
     Secretary, in consultation with the Attorney General of the 
     United States, forensic pathologists, medical examiners, 
     coroners, pediatric pathologists, pediatric cardiologists, 
     pediatric neuropathologists, geneticists, infectious disease 
     specialists, and other individuals and organizations 
     determined appropriate by the Secretary, shall--
       ``(A) develop guidelines for a standard autopsy protocol 
     for SUID; and
       ``(C) not less than every 5 years, review and, as 
     appropriate, update such guidelines.
       ``(4) Training.--The Secretary, in consultation with the 
     Attorney General of the United States, may--
       ``(A) conduct or support--
       ``(i) training activities for medical examiners, coroners, 
     medicolegal death scene investigators, law enforcement 
     personnel, and emergency medical technicians or paramedics 
     concerning death scene investigations for SUID, including the 
     use of standard death scene investigation protocols 
     disseminated under paragraph (2); and
       ``(ii) training activities for medical examiners, coroners, 
     and forensic pathologists concerning standard autopsy 
     protocols for SUID developed under paragraph (3); and
       ``(B) make recommendations to health professional 
     organizations regarding the integration of protocols 
     disseminated or developed under this subsection, and training 
     conducted or supported under this paragraph, into existing 
     training and continuing education programs.
       ``(c) Sudden Unexplained Death in Childhood Activities.--
     The Secretary, acting through the Director of the Centers for 
     Disease Control and Prevention, shall continue to carry out 
     activities of the Centers relating to sudden unexpected death 
     in childhood (SUDC), including the following:
       ``(1) Surveillance.--The Secretary, in consultation with 
     the Director of the National Institutes of Health, shall 
     provide for surveillance efforts to gather sociodemographic, 
     death scene investigation, clinical history, and autopsy 
     information on SUDC cases through the review of existing 
     records on SUDC, including through the utilization of 
     existing surveillance systems (including the Sudden Death in 
     the Young Registry).
       ``(2) Guidelines for a standard autopsy protocol.--The 
     Secretary, in consultation with the Attorney General of the 
     United States, forensic pathologists, medical examiners, 
     coroners, pediatric pathologists, pediatric cardiologists, 
     pediatric neuropathologists, geneticists, infectious disease 
     specialists, and other individuals and organizations 
     determined appropriate by the Secretary, may--
       ``(A) develop guidelines for a standard autopsy protocol 
     for SUDC; and
       ``(B) not less than every 5 years, review and, as 
     appropriate, update such guidelines.
       ``(3) Review of applicability of programs and activities.--
     Not later than 18 months after the date of enactment of this 
     section, the Secretary, acting through the Director of the 
     Centers for Disease Control and Prevention, and in 
     consultation with the Director of the National Institutes of 
     Health, shall complete an evaluation of the possibility of 
     carrying out or intensifying, with respect to SUDC, the types 
     of programs and activities that are authorized to be carried 
     out under subsection (b) with respect to SUID.
       ``(d) Report to Congress.--Not later than 2 years after the 
     date of enactment of this Act, the Secretary, acting through 
     the Director of the Centers for Disease Control and 
     Prevention, shall submit to the Congress a report on the 
     implementation of this section. Such report shall include--
       ``(1) the results of the evaluation under subsection 
     (c)(3); and
       ``(2) a description of any activities that--
       ``(A) are being carried out by the Centers for Disease 
     Control and Prevention in consultation with the National 
     Institutes of Health relating to stillbirth, SUID, or SUDC; 
     and
       ``(B) are in addition to the activities being carried out 
     pursuant to this section.
       ``(e) Definitions.--In this section:
       ``(1) The term `stillbirth' means a spontaneous fetal death 
     that--
       ``(A) occurs at 20 or more weeks gestation; or
       ``(B) if the age of the fetus is not known, involves a 
     fetus weighing 350 grams or more.
       ``(2) The terms `sudden unexpected infant death' and `SUID' 
     mean the death of an infant less than 1 year of age--
       ``(A) which occurs suddenly and unexpectedly; and
       ``(B) whose cause--
       ``(i) is not immediately obvious prior to investigation; 
     and
       ``(ii) is either explained upon investigation or remains 
     unexplained.
       ``(3) The terms `sudden unexplained death in childhood' and 
     `SUDC' mean the sudden death of a child 1 year of age or 
     older which remains unexplained after a thorough case 
     investigation that includes--
       ``(A) a review of the clinical history and circumstances of 
     death; and
       ``(B) performance of a complete autopsy with appropriate 
     ancillary testing.
       ``(f) Funding.--No additional funds are authorized to be 
     appropriated for the purpose of carrying out this section, 
     and this section shall be carried out using amounts otherwise 
     available for such purpose.''.

  The SPEAKER pro tempore. Pursuant to the rule, the gentleman from 
Texas (Mr. Burgess) and the gentleman from New Jersey (Mr. Pallone) 
each will control 20 minutes.
  The Chair recognizes the gentleman from Texas.

                              {time}  1745


                             General Leave

  Mr. BURGESS. Mr. Speaker, I ask unanimous consent that all Members 
may have 5 legislative days in which to revise and extend their remarks 
and to insert extraneous material into the Record on the bill.
  The SPEAKER pro tempore. Is there objection to the request of the 
gentleman from Texas?
  There was no objection.
  Mr. BURGESS. Mr. Speaker, I yield myself such time as I may consume.
  Mr. Speaker, I rise today in support of H.R. 669, the Sudden 
Unexpected Death Data Enhancement and Awareness Act, introduced by my 
colleague, Mr. Pallone of New Jersey.
  Prevention of stillbirth, sudden unexpected infant death, and sudden 
unexplained death in children depends upon the collection of data 
related to the biological, social, and environmental factors associated 
with these outcomes.
  The Centers for Disease Control and Prevention collects data through 
existing surveillance systems in order to identify the extent of the 
problem and risk factors.
  Sudden unexpected infant death rates decreased in the 1990s during 
the Back to Sleep campaign, but have remained unchanged since then. It 
is time for us to address this problem.
  H.R. 669 authorizes activities at the Centers for Disease Control to 
help improve the understanding of stillbirth, sudden unexpected infant 
death, and sudden unexplained death in children by improving data 
collection, increasing surveillance strategies, and setting guidelines 
and protocols for death scene investigations.
  I ask my colleagues to support this important piece of legislation, 
and I reserve the balance of my time.
  Mr. PALLONE. Mr. Speaker, I yield myself such time as I may consume.
  I rise with great pride to be speaking in support of H.R. 669, the 
Sudden Unexpected Death Data Enhancement and Awareness Act.
  This has been an issue that I have worked on for many years in 
Congress. In particular, it is one of the many bills that I partnered 
with my late

[[Page H7343]]

friend, Senator Frank Lautenberg. I also want to thank Congressman 
Peter King as well, since he worked with me on this.
  Stillbirth and unexpected infant death affect tens of thousands of 
families every year, according to data from CDC, and sudden infant 
death syndrome is the leading cause of death for infants up to 12 
months old. Unfortunately, too many families in this country suffer 
these tragic events, but what makes matters even worse is their 
struggle with the process to help find answers.
  Currently, there is a lack of comprehensive, high-quality data to 
best understand why these events occur in the first place. The intent 
of the bill has always been to better utilize the Federal Government's 
activities in this area.
  Specifically, it would expand and standardize surveillance and data 
collection for stillbirth and sudden unexpected infant death and sudden 
unexplained death in childhood at the Centers for Disease Control and 
Prevention.
  In addition, it would improve the development of standard protocols 
for use in death scene investigations and autopsies surrounding these 
deaths and also allow the Secretary of HHS to conduct training 
activities regarding these protocols.
  The bill also requires CDC, in consultation with NIH, to submit a 
report to Congress on current activities related to stillbirth, SUID, 
and SUDC and evaluate the possibility of expanding programs related to 
SUDC specifically.
  Let me close, Mr. Speaker, by personally thanking Laura Crandall, 
cofounder and codirector of the CJ Foundation's SUDC program. This 
issue hits close to home for Laura, but in the face of tragedy, she 
decided to work to help others who also suffered.
  She has been a great advocate for this bill and has spread awareness 
of SUDC in communities all across the country. I thank her for her 
strength, determination, and dedication.
  Mr. Speaker, this bill isn't everything I think the CDC can be doing 
to address the needs of families across the country, but it represents 
a critical step on a very tragic issue that deserves our attention.
  I urge my colleagues to support its passage, and I yield back the 
balance of my time.
  Mr. BURGESS. Mr. Speaker, I urge my colleagues to support the bill, 
and I yield back the balance of my time.
  Mr. WAXMAN. Mr. Speaker, I rise in support of H.R. 669, the Sudden 
Unexpected Death Data Enhancement and Awareness Act.
  Stillbirths--the loss of a pregnancy after 20 weeks of gestation--
occur for approximately 26,000 women in the United States each year. 
The Centers for Disease Control and Prevention (CDC) estimate there are 
4,000 sudden unexplained infant deaths (SUID) in children under age one 
each year as well. Sudden Unexplained Deaths in Childhood (SUDC) occur 
in children over the age of 12 months, with an estimated incidence of 
1.2 deaths per 100,000 children.
  CDC currently oversees a number of initiatives to collect data on 
these tragic deaths. H.R. 669 would help to improve surveillance on 
SUID, SUDC, and stillbirths. Improving data on the number and root 
causes of these unexplained deaths will be a critical step in advancing 
our efforts to reduce them.
  I want to commend the sponsors of this legislation, Ranking Member 
Pallone and Congressman King, for their leadership on this issue. I 
would also like to thank Chairman Upton, Chairman Pitts, and all of our 
staff for helping to bring this bill through the Energy and Commerce 
Committee and to the floor today.
  I support this legislation and urge my colleagues to do the same.
  The SPEAKER pro tempore. The question is on the motion offered by the 
gentleman from Texas (Mr. Burgess) that the House suspend the rules and 
pass the bill, H.R. 669, as amended.
  The question was taken; and (two-thirds being in the affirmative) the 
rules were suspended and the bill, as amended, was passed.
  A motion to reconsider was laid on the table.

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