[Congressional Record Volume 166, Number 209 (Thursday, December 10, 2020)]
[House]
[Pages H7132-H7133]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]





           SCARLETT'S SUNSHINE ON SUDDEN UNEXPECTED DEATH ACT

  Mrs. DINGELL. Madam Speaker, I ask unanimous consent to take from the 
Speaker's table the bill (S. 1130) 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, and ask 
for its immediate consideration in the House.
  The Clerk read the title of the bill.
  The SPEAKER pro tempore. Is there objection to the request of the 
gentlewoman from Michigan?
  There was no objection.
  The text of the bill is as follows:

                                S. 1130

       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 ``Scarlett's Sunshine on 
     Sudden Unexpected Death Act''.

     SEC. 2. AMENDMENT TO THE PUBLIC HEALTH SERVICE ACT.

       Part B of title XI of the Public Health Service Act (42 
     U.S.C. 241 et seq.) is amended--
       (1) in the part heading, by striking ``sudden infant death 
     syndrome'' and inserting ``sudden unexpected infant death, 
     sudden infant death syndrome, and sudden unexpected death in 
     childhood''; and
       (2) by inserting before section 1122 the following:

     ``SEC. 1121. ADDRESSING SUDDEN UNEXPECTED INFANT DEATH AND 
                   SUDDEN UNEXPECTED DEATH IN CHILDHOOD.

       ``(a) In General.--The Secretary may develop, support, or 
     maintain programs or activities to address sudden unexpected 
     infant death and sudden unexpected death in childhood, 
     including by--
       ``(1) continuing to support the Sudden Unexpected Infant 
     Death and Sudden Death in the Young Case Registry of the 
     Centers for Disease Control and Prevention and other fatality 
     case reporting systems that include data pertaining to sudden 
     unexpected infant death and sudden unexpected death in 
     childhood, as appropriate, including such systems supported 
     by the Health Resources and Services Administration, in order 
     to--
       ``(A) increase the number of States and jurisdictions 
     participating in such registries or systems; and
       ``(B) improve the utility of such registries or systems, 
     which may include--
       ``(i) making summary data available to the public in a 
     timely manner on the internet website of the Department of 
     Health and Human Services, in a manner that, at a minimum, 
     protects personal privacy to the extent required by 
     applicable Federal and State law; and
       ``(ii) making the data submitted to such registries or 
     systems available to researchers, in a manner that, at a 
     minimum, protects personal privacy to the extent required by 
     applicable Federal and State law; and
       ``(2) awarding grants or cooperative agreements to States, 
     Indian Tribes, and Tribal organizations for purposes of--
       ``(A) supporting fetal and infant mortality and child death 
     review programs for sudden unexpected infant death and sudden 
     unexpected death in childhood, including by establishing such 
     programs at the local level;
       ``(B) improving data collection related to sudden 
     unexpected infant death and sudden unexpected death in 
     childhood, including by--
       ``(i) improving the completion of death scene 
     investigations and comprehensive autopsies that include a 
     review of clinical history and circumstances of death with 
     appropriate ancillary testing; and
       ``(ii) training medical examiners, coroners, death scene 
     investigators, law enforcement personnel, emergency medical 
     technicians, paramedics, emergency department personnel, and 
     others who perform death scene investigations with respect to 
     the deaths of infants and children, as appropriate;
       ``(C) identifying, developing, and implementing best 
     practices to reduce or prevent sudden unexpected infant death 
     and sudden unexpected death in childhood, including practices 
     to reduce sleep-related infant deaths;
       ``(D) increasing the voluntary inclusion, in registries 
     established for the purpose of conducting research on sudden 
     unexpected infant death and sudden unexpected death in 
     childhood, of samples of tissues or genetic materials from 
     autopsies that have been collected pursuant to Federal or 
     State law and for which the parent or guardian has provided 
     informed consent for inclusion in such registries; or
       ``(E) disseminating information and materials to health 
     care professionals and the public on risk factors that 
     contribute to sudden unexpected infant death and sudden 
     unexpected death in childhood, which may include information 
     on risk factors that contribute to sleep-related sudden 
     unexpected infant death or sudden unexpected death in 
     childhood.
       ``(b) Application.--To be eligible to receive a grant or 
     cooperative agreement under subsection (a)(2), a State, 
     Indian Tribe, or Tribal organization shall submit to the 
     Secretary an application at such time, in such manner, and 
     containing such information as the Secretary may require, 
     including information on how such State will ensure 
     activities conducted under this section are coordinated with 
     other federally-funded programs to reduce infant mortality, 
     as appropriate.
       ``(c) Technical Assistance.--The Secretary shall provide 
     technical assistance to States, Tribes, and Tribal 
     organizations receiving a grant or cooperative agreement 
     under subsection (a)(2) for purposes of carrying out the 
     program in accordance with this section.
       ``(d) Reporting Forms.--
       ``(1) In general.--The Secretary shall, as appropriate, 
     encourage the use of sudden unexpected infant death and 
     sudden unexpected death in childhood reporting forms 
     developed in collaboration with the Centers for Disease 
     Control and Prevention to improve the quality of data 
     submitted to the Sudden Unexpected Infant Death and Sudden 
     Death in the Young Case Registry, and other fatality case 
     reporting systems that include data pertaining to sudden 
     unexpected infant death and sudden unexpected death in 
     childhood.
       ``(2) Update of forms.--The Secretary shall assess whether 
     updates are needed to the sudden unexpected infant death 
     investigation reporting form used by the Centers for Disease 
     Control and Prevention in order to improve the use of such 
     form with other fatality case reporting systems supported by 
     the Department of Health and Human Services, and shall make 
     such updates as appropriate.
       ``(e) Definitions.--In this section:
       ``(1) Sudden infant death syndrome.--The term `sudden 
     infant death syndrome' means a sudden unexpected infant death 
     that remains unexplained after a thorough case investigation.
       ``(2) Sudden unexpected infant death.--The term `sudden 
     unexpected infant death' means the sudden death of an infant 
     under 1 year of age that when first discovered did not have 
     an obvious cause. Such term includes such deaths that are 
     explained, as well as deaths that remain unexplained (which 
     are known as sudden infant death syndrome).
       ``(3) Sudden unexpected death in childhood.--The term 
     `sudden unexpected death in childhood' means the sudden death 
     of a child who is at least 1 year of age but not more than 17 
     years of age that, when first discovered, did not have an 
     obvious cause. Such term includes such deaths that are 
     explained, as well as deaths that remain unexplained (which 
     are known as sudden unexplained death in childhood).
       ``(4) Sudden unexplained death in childhood.--The term 
     `sudden unexplained death in childhood' means a sudden 
     unexpected death in childhood that remains unexplained after 
     a thorough case investigation.
       ``(f) Authorization of Appropriations.--For the purpose of 
     carrying out this section, there is authorized to be 
     appropriated $12,000,000 for each of fiscal years 2021 
     through 2025.''.

     SEC. 3. REPORT TO CONGRESS.

       (a) In General.--Not later than 2 years after the date of 
     enactment of this Act and biennially thereafter, the 
     Secretary of Health and Human Services shall submit to the 
     Committee on Health, Education, Labor, and Pensions of the 
     Senate and the Committee on Energy and Commerce of the House 
     of Representatives a report that contains, with respect to 
     the reporting period--
       (1) information regarding the incidence and number of 
     sudden unexpected infant death and sudden unexpected death in 
     childhood (including the number of such infant and child 
     deaths that remain unexplained after investigation), 
     including, to the extent practicable--
       (A) a summary of such information by racial and ethnic 
     group, and by State;
       (B) aggregate information obtained from death scene 
     investigations and autopsies; and
       (C) recommendations for reducing the incidence of sudden 
     unexpected infant death and sudden unexpected death in 
     childhood;
       (2) an assessment of the extent to which various approaches 
     of reducing and preventing sudden unexpected infant death and 
     sudden unexpected death in childhood have been effective; and
       (3) a description of the activities carried out under 
     section 1121 of the Public Health Service Act (as added by 
     section 2).
       (b) Definitions.--In this section, the terms ``sudden 
     unexpected infant death'' and ``sudden unexpected death in 
     childhood'' have the meanings given such terms in section 
     1121 of the Public Health Service Act (as added by section 
     2).


                   Amendment Offered by Mrs. Dingell

  Mrs. DINGELL. Madam Speaker, I have an amendment at the desk.
  The SPEAKER pro tempore. The Clerk will report the amendment.
  The Clerk read as follows:

       Strike all after section 1 and insert the following:

     SECTION 2. AMENDMENT TO THE PUBLIC HEALTH SERVICE ACT.

       Part B of title XI of the Public Health Service Act (42 
     U.S.C. 241 et seq.) is amended--
       (1) in the part heading, by striking ``sudden infant death 
     syndrome'' and inserting ``sudden unexpected infant death, 
     sudden infant death syndrome, and sudden unexpected death in 
     childhood''; and
       (2) by inserting before section 1122 the following:

[[Page H7133]]

  


     ``SEC. 1121. ADDRESSING SUDDEN UNEXPECTED INFANT DEATH AND 
                   SUDDEN UNEXPECTED DEATH IN CHILDHOOD.

       ``(a) In General.--The Secretary may develop, support, or 
     maintain programs or activities to address sudden unexpected 
     infant death and sudden unexpected death in childhood, 
     including by--
       ``(1) continuing to support the Sudden Unexpected Infant 
     Death and Sudden Death in the Young Case Registry of the 
     Centers for Disease Control and Prevention and other fatality 
     case reporting systems that include data pertaining to sudden 
     unexpected infant death and sudden unexpected death in 
     childhood, as appropriate, including such systems supported 
     by the Health Resources and Services Administration, in order 
     to--
       ``(A) increase the number of States and jurisdictions 
     participating in such registries or systems; and
       ``(B) improve the utility of such registries or systems, 
     which may include--
       ``(i) making summary data available to the public in a 
     timely manner on the internet website of the Department of 
     Health and Human Services, in a manner that, at a minimum, 
     protects personal privacy to the extent required by 
     applicable Federal and State law; and
       ``(ii) making the data submitted to such registries or 
     systems available to researchers, in a manner that, at a 
     minimum, protects personal privacy to the extent required by 
     applicable Federal and State law; and
       ``(2) awarding grants or cooperative agreements to States, 
     Indian Tribes, and Tribal organizations for purposes of--
       ``(A) supporting fetal and infant mortality and child death 
     review programs for sudden unexpected infant death and sudden 
     unexpected death in childhood, including by establishing such 
     programs at the local level;
       ``(B) improving data collection related to sudden 
     unexpected infant death and sudden unexpected death in 
     childhood, including by--
       ``(i) improving the completion of death scene 
     investigations and comprehensive autopsies that include a 
     review of clinical history and circumstances of death with 
     appropriate ancillary testing; and
       ``(ii) training medical examiners, coroners, death scene 
     investigators, law enforcement personnel, emergency medical 
     technicians, paramedics, emergency department personnel, and 
     others who perform death scene investigations with respect to 
     the deaths of infants and children, as appropriate;
       ``(C) identifying, developing, and implementing best 
     practices to reduce or prevent sudden unexpected infant death 
     and sudden unexpected death in childhood, including practices 
     to reduce sleep-related infant deaths;
       ``(D) increasing the voluntary inclusion, in registries 
     established for the purpose of conducting research on sudden 
     unexpected infant death and sudden unexpected death in 
     childhood, of samples of tissues or genetic materials from 
     autopsies that have been collected pursuant to Federal or 
     State law and for which the parent or guardian has provided 
     informed consent for inclusion in such registries;
       ``(E) disseminating information and materials to health 
     care professionals and the public on risk factors that 
     contribute to sudden unexpected infant death and sudden 
     unexpected death in childhood, which may include information 
     on risk factors that contribute to sleep-related sudden 
     unexpected infant death or sudden unexpected death in 
     childhood; or
       ``(F) providing information, referrals, or peer or follow-
     up support services to families who have experienced sudden 
     unexpected infant death or sudden unexpected death in 
     childhood.
       ``(b) Application.--To be eligible to receive a grant or 
     cooperative agreement under subsection (a)(2), a State, 
     Indian Tribe, or Tribal organization shall submit to the 
     Secretary an application at such time, in such manner, and 
     containing such information as the Secretary may require, 
     including information on how such State will ensure 
     activities conducted under this section are coordinated with 
     other federally-funded programs to reduce infant and child 
     mortality, as appropriate.
       ``(c) Technical Assistance.--The Secretary shall provide 
     technical assistance to States, Tribes, and Tribal 
     organizations receiving a grant or cooperative agreement 
     under subsection (a)(2) for purposes of carrying out the 
     program in accordance with this section.
       ``(d) Reporting Forms.--
       ``(1) In general.--The Secretary shall, as appropriate, 
     encourage the use of sudden unexpected infant death and 
     sudden unexpected death in childhood reporting forms 
     developed in collaboration with the Centers for Disease 
     Control and Prevention to improve the quality of data 
     submitted to the Sudden Unexpected Infant Death and Sudden 
     Death in the Young Case Registry, and other fatality case 
     reporting systems that include data pertaining to sudden 
     unexpected infant death and sudden unexpected death in 
     childhood.
       ``(2) Update of forms.--The Secretary shall assess whether 
     updates are needed to the sudden unexpected infant death 
     investigation reporting form used by the Centers for Disease 
     Control and Prevention in order to improve the use of such 
     form with other fatality case reporting systems supported by 
     the Department of Health and Human Services, and shall make 
     such updates as appropriate.
       ``(e) Definitions.--In this section:
       ``(1) Sudden infant death syndrome.--The term `sudden 
     infant death syndrome' means a sudden unexpected infant death 
     that remains unexplained after a thorough case investigation.
       ``(2) Sudden unexpected infant death.--The term `sudden 
     unexpected infant death' means the sudden death of an infant 
     under 1 year of age that when first discovered did not have 
     an obvious cause. Such term includes such deaths that are 
     explained, as well as deaths that remain unexplained (which 
     are known as sudden infant death syndrome).
       ``(3) Sudden unexpected death in childhood.--The term 
     `sudden unexpected death in childhood' means the sudden death 
     of a child who is at least 1 year of age but not more than 17 
     years of age that, when first discovered, did not have an 
     obvious cause. Such term includes such deaths that are 
     explained, as well as deaths that remain unexplained (which 
     are known as sudden unexplained death in childhood).
       ``(4) Sudden unexplained death in childhood.--The term 
     `sudden unexplained death in childhood' means a sudden 
     unexpected death in childhood that remains unexplained after 
     a thorough case investigation.
       ``(f) Authorization of Appropriations.--For the purpose of 
     carrying out this section, there is authorized to be 
     appropriated $12,000,000 for each of fiscal years 2022 
     through 2026.''.

     SEC. 3. REPORT TO CONGRESS.

       (a) In General.--Not later than 2 years after the date of 
     enactment of this Act and biennially thereafter, the 
     Secretary of Health and Human Services shall submit to the 
     Committee on Health, Education, Labor, and Pensions of the 
     Senate and the Committee on Energy and Commerce of the House 
     of Representatives a report that contains, with respect to 
     the reporting period--
       (1) information regarding the incidence and number of 
     sudden unexpected infant death and sudden unexpected death in 
     childhood (including the number of such infant and child 
     deaths that remain unexplained after investigation), 
     including, to the extent practicable--
       (A) a summary of such information by racial and ethnic 
     group, and by State;
       (B) aggregate information obtained from death scene 
     investigations and autopsies; and
       (C) recommendations for reducing the incidence of sudden 
     unexpected infant death and sudden unexpected death in 
     childhood;
       (2) an assessment of the extent to which various approaches 
     of reducing and preventing sudden unexpected infant death and 
     sudden unexpected death in childhood have been effective; and
       (3) a description of the activities carried out under 
     section 1121 of the Public Health Service Act (as added by 
     section 2).
       (b) Definitions.--In this section, the terms ``sudden 
     unexpected infant death'' and ``sudden unexpected death in 
     childhood'' have the meanings given such terms in section 
     1121 of the Public Health Service Act (as added by section 
     2).

  Mrs. DINGELL (during the reading). Madam Speaker, I ask unanimous 
consent to dispense with the reading of the amendment.
  The SPEAKER pro tempore. Is there objection to the request of the 
gentlewoman from Michigan?
  There was no objection.
  The amendment was agreed to.
  The bill was ordered to be read a third time, was read the third 
time, and passed, and a motion to reconsider was laid on the table.

                          ____________________