A bipartisan coalition of lawmakers has proposed new legislation that would earmark $45 million for research on the stillbirth rate in the United States.
Approximately 21,000 babies were stillborn in America in 2020 according to data from the Centers for Disease Control and Prevention. Stillbirths are reported in 1 in every 170 pregnancies and an estimated 57 babies are stillborn each day.
The Stillbirth Health Improvement and Education (SHINE) for Autumn Act of 2023 was introduced in the House of Representatives by Representative Young Kim of California, a Republican, on July 27. The bill is co-sponsored by representatives Kathy Castor of Florida, Dave Joyce of Ohio, and Robin Kelly of Illinois.
Kim, who co-chairs the Maternity Care Caucus, said she “experienced the hardships of pregnancy firsthand” and “recently grieved with one of [her] daughters through the pain of losing a baby.”
“Each pregnancy faces unique challenges, and at least 1 in every 4 stillbirths is preventable,” Kim said in a press release. “The SHINE for Autumn Act will help us gain the research, resources, and education needed to prevent stillbirths, support our health workforce, and help women have healthy pregnancies. I am proud to lead this commonsense bill that will positively impact moms and families, and I’ll keep fighting for maternal health care solutions.”
“Ohio has one of the country’s highest stillbirth rates, outpacing the national average and failing to show meaningful signs of improvement,” said Joyce. “We must leverage federal resources to prevent this continued avoidable loss of life. The SHINE for Autumn Act takes a critical step in stillbirth prevention by funding enhanced research, training, and awareness of this issue and arming healthcare providers with the tools to help prevent it.”
Kelly, the other co-chair of the Maternal Care Caucus, stressed her commitment to “ending the maternal health crisis and getting mothers and babies the care they need.”
The term stillbirth refers to the death of an expected child at or after 20 weeks gestation, per ProPublica.
The bill would authorize the appropriation of $5 million annually between 2024 and 2028 to enable to the collection and review of data relating to stillbirths.
Data may be culled from existing research conducted for state or sub-state maternal mortality data or by Fetal Infant Mortality Reviews. Data must be collected “in a manner that protects personal privacy and in a manner consistent with applicable Federal and State privacy law” and “with the consent of the woman who experience a stillbirth, including any such data with respect to the clinical history, postmortem examination, and placental pathology.”
The funding will also be used to raise awareness about stillbirths. The proposed law also authorizes the appropriation of an additional $1 million annually to cover the consulting costs of experts from related fields – including national healthcare professionals, family support organizations, obstetricians and gynecologists, nurses, pediatricians, midwives, maternal-fetal medicine specialists, or statisticians.
The SHINE Act also has bipartisan support in the US Senate, where a companion bill was introduced by Senator Marco Rubio of Florida and Senator Corey Booker of New Jersey.
“It is unacceptable that despite being the wealthiest country in the world, the United States continues to see high stillbirth rates, resulting in thousands of families grappling with the unthinkable,” said Booker in a statement released on July 27. “This bipartisan legislation is an important step to improve data collection on stillbirth and enhance research, training, and awareness to help put an end to this crisis.”
“Losing a child is an unimaginable tragedy, and we should use all resources available to prevent this devastating loss of life. I am proud to reintroduce this bipartisan legislation that would employ resources to significantly lower the number of stillborn babies in the United States,” said Rubio.
The act is named for the daughter of Debbie Haine Vijayvergiy, a New Jersey-based maternal healthcare activist who co-founded the Action for Stillbirth Awareness and Prevention coalition in 2013. Her daughter, Autumn Joy, was born still in July 2011.
