H.R. 5012

SHINE for Autumn Act of 2023

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I

118th CONGRESS

1st Session

H. R. 5012

IN THE HOUSE OF REPRESENTATIVES

July 27, 2023

Mrs. Kim of California (for herself, Ms. Castor of Florida, Mr. Joyce of Ohio, Ms. Kelly of Illinois, Mr. Bacon, Ms. Lois Frankel of Florida, Mr. Kilmer, Mr. Fitzpatrick, Ms. Norton, Ms. Blunt Rochester, Ms. Sherrill, Mrs. Trahan, and Mrs. Hinson) introduced the following bill; which was referred to the Committee on Energy and Commerce

A BILL

To improve research and data collection on stillbirths, and for other purposes.

1.

Short title

This Act may be cited as the Stillbirth Health Improvement and Education for Autumn Act of 2023 or the SHINE for Autumn Act of 2023.

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:

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, including from existing datasets like State or sub-State maternal mortality data and Fetal and Infant Mortality Review data, with respect to stillbirths for public health and research purposes;

(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)

Condition

As a condition of receipt of funds under this section, all data collected shall be in a manner that protects personal privacy and in a manner that is consistent with applicable Federal and State privacy law, at a minimum.

(3)

Authorization of appropriations

To carry out this subsection, there is authorized to be appropriated $5,000,000 for each of fiscal years 2024 through 2028.

(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 woman who experienced the stillbirth, including any such data with respect to the clinical history, postmortem examination, and placental pathology; and

(ii)

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)

nurse midwives and 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 2024 through 2028.

(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.

.

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:

1123.

Improving perinatal pathology

(a)

In general

The Secretary shall incorporate into an existing training program a Perinatal Pathology Fellowship Program, a Postdoctoral Research Fellowship on Factors Associated with Stillbirth Program, or both.

(b)

Activities

Each program incorporated under subsection (a) shall—

(1)

provide training in perinatal autopsy pathology;

(2)

provide practice-based learning opportunities to foster exchange and connection with State efforts concerning fetal death review that are supported under title V of the Social Security Act;

(3)

conduct research on, and improve data collection with respect to, stillbirths, including through fetal autopsies; and

(4)

address challenges in stillbirth education, research, and data collection.

(c)

Authorization of appropriations

There is authorized to be appropriated to carry out this section $3,000,000 for each of fiscal years 2024 through 2028.

.

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 each program under section 1123 of the Public Health Service Act, as added by section 3 of this Act.