Stillbirth Health Improvement and Education for Autumn Act of 2021
Floor Speech
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Mr. PALLONE. Mr. Speaker, I move to suspend the rules and pass the bill (H.R. 5487) to improve research and data collection on stillbirths, and for other purposes, as amended.
The Clerk read the title of the bill.
The text of the bill is as follows: H.R. 5487
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 ``Stillbirth Health Improvement and Education for Autumn Act of 2021'' or the ``SHINE for Autumn Act of 2021''. SEC. 2. STILLBIRTH RESEARCH AND DATA COLLECTION IMPROVEMENTS.
Title III of the Public Health Service Act is amended by inserting after section 317L-1 of such Act (42 U.S.C. 247b- 13a) the following: ``SEC. 317L-2. STILLBIRTH RESEARCH AND DATA COLLECTION IMPROVEMENTS.
``(a) Stillbirth Surveillance and Risk Factor Studies.--
``(1) In general.--The Secretary may award grants to States for purposes of--
``(A) conducting surveillance and collecting data with respect to stillbirths;
``(B) building State and local public health capacity to assess stillbirth data; and
``(C) collecting and reporting data on stillbirth risk factors, including any quantifiable outcomes with respect to such risk factors.
``(2) Authorization of appropriations.--To carry out this subsection, there is authorized to be appropriated $5,000,000 for each of fiscal years 2022 through 2026.
``(b) Guidelines and Educational Awareness Materials.--
``(1) In general.--The Secretary shall--
``(A) issue guidelines to State departments of health and State and local vital statistics units on--
``(i) collecting data on stillbirth from health care providers, and with the consent of the family involved, including any such data with respect to the clinical history, postmortem examination, and placental pathology;
``(ii) sharing such data with Federal agencies determined appropriate by the Director of the Centers for Disease Control and Prevention; and
``(iii) improving processes and training related to stillbirth data collection and reporting to ensure standardization and completeness of data; and
``(B) develop, and make publicly available, educational awareness materials on stillbirths.
``(2) Consultation.--In carrying out paragraph (1), the Secretary may consult with--
``(A) national health care professional associations;
``(B) national associations representing State and local public health officials;
``(C) organizations that assist families with burial support and bereavement services;
``(D) nurses and nurse practitioners;
``(E) obstetricians and gynecologists;
``(F) pediatricians;
``(G) maternal-fetal medicine specialists;
``(H) midwives;
``(I) mental health professionals;
``(J) statisticians;
``(K) individuals who have experienced a stillbirth; and
``(L) advocacy organizations representing such individuals.
``(3) Authorization of appropriations.--To carry out this subsection, there is authorized to be appropriated $1,000,000 for each of fiscal years 2022 through 2026.
``(c) Vital Statistics Unit Defined.--In this section, the term `vital statistics unit' means the entity that is responsible for maintaining vital records for a State, or a political subdivision of such State, including official records of live births, deaths, fetal deaths, marriages, divorces, and annulments.''. SEC. 3. PERINATAL PATHOLOGY FELLOWSHIPS.
The Public Health Service Act is amended by inserting after section 1122 of such Act (42 U.S.C. 300c-12) the following: ``SEC. 1123. IMPROVING PERINATAL PATHOLOGY.
``(a) In General.--The Secretary shall establish and implement, or incorporate into an existing training program, a Perinatal Pathology Fellowship Program or a Postdoctoral Research Fellowship on Factors Associated with Stillbirth Program to--
``(1) provide training in perinatal autopsy pathology;
``(2) conduct research on, and improve data collection through fetal autopsies with respect to, stillbirth; and
``(3) address challenges in stillbirth education, research, and data collection.
``(b) Authorization of Appropriations.--There are authorized to be appropriated to carry out this section $3,000,000 for each of fiscal years 2022 through 2026.''. SEC. 4. REPORTS.
(a) Educational Guidelines Report.--
(1) In general.--Not later than five years after the date of enactment of this Act, the Secretary of Health and Human Services shall publish on a public website of the Department of Health and Human Services a report with educational guidelines on stillbirth and stillbirth risk factors.
(2) Contents.--Such report shall include, to the extent practicable and appropriate, the guidelines issued and educational awareness materials developed under section 317L- 2 of the Public Health Service Act, as added by section 2 of this Act.
(b) Progress Report.--Not later than five years after the date of enactment of this Act, the Secretary of Health and Human Services shall submit to the Congress a comprehensive report on the progress and effectiveness of the Perinatal Pathology Fellowship Program established under section 1123 of the Public Health Service Act, as added by section 3 of this Act.
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Mr. PALLONE. 5487.
Mr. Speaker, stillbirth is one of the most devastating losses that affects more than 24,000 families each year. Stillbirth touches families of all races, religions, and socioeconomic status.
For many parents, stillbirth is a loss that hits unexpectedly. In fact, up to half of all stillbirths occur in pregnancies that had seemed problem-free. However, miscarriages and stillbirths are not systematically recorded, even in developed countries, suggesting that the numbers could be even higher.
While there has been some progress in reducing stillbirths, causes and risk factors have not been explored extensively.
H.R. 5487, the SHINE for Autumn Act of 2021, is an important first step in promoting positive change around this issue. The legislation is in honor of Autumn Joy, who was born stillborn on July 8, 2011. For the last decade, her mother, Debbie Haine, has transformed her loss into action.
The legislation seeks to bolster research on stillbirths and stillbirth risk factors to lower our Nation's stillbirth rate. H.R. 5487 would provide resources to State and Federal health departments, improve data collection around stillbirths, and increase education and awareness.
Since a stillbirth is such a private, devastating life event, the data collected is only intended for the purpose of informing public health research and improving health outcomes. The resources provided in the legislation to the Centers for Disease Control and Prevention, the National Institutes of Health, and State health departments to improve data collection and increase education and awareness is simply the beginning of a longer term solution toward the prevention and reduction of incidences of stillbirth nationwide.
I want to thank Representatives Herrera Beutler, Roybal-Allard, Mullin, and Castor for their work on this important legislation.
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Mr. PALLONE. Castor), who is a member of the Energy and Commerce Committee and chair of the Select Committee on the Climate Crisis.
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Mr. PALLONE. Roybal-Allard), the prime Democratic sponsor of the bill and the chairwoman of the Appropriations Subcommittee on Homeland Security.
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Mr. PALLONE. Mr. Speaker, I urge support for this critical legislation, and I yield back the balance of my time.
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