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Washington, D.C. — U.S. Senators Marco Rubio (R-FL) and Cory Booker (D-NJ) introduced the Stillbirth Health Improvement and Education (SHINE) for Autumn Act, legislation that aims to reduce and better understand the alarmingly high U.S. stillbirth rate through investment in research and data collection. Named after Autumn Joy, a New Jersey baby who was stillborn in 2011, the bill would provide critical resources to states, local public health departments, the Centers for Disease Control and Prevention (CDC), and other related federal agencies to improve data collection and increase education and awareness of stillbirth in the United States. Companion legislation, led by Representatives Jaime Herrera Beutler (R-WA), Lucille Roybal-Allard (D-CA), Markwayne Mullin (R-OK), and Kathy Castor (D-FL), overwhelmingly passed the House of Representatives in December of 2021.
Despite medical innovations, stillbirth affects about 1 in 160 births, with 24,000 babies being stillborn in the United States every year. There are also longstanding disparities in stillbirth rates among racial and ethnic groups, with Black families experiencing stillbirth at two times the rate of their white counterparts. Nearly 1 in 4 stillbirths are potentially preventable.
“The U.S. stillbirth rate is unacceptable and must be addressed,” Rubio said. “Losing a child is an unimaginable tragedy and we should use all federal resources available to prevent this devastating loss of life. I am proud to introduce bipartisan legislation that would employ federal resources to significantly lower the number of stillborn babies in the United States.”
“As countries around the world work to reduce stillbirth rates, the United States continues to lag behind, resulting in thousands of families, especially Black families, experiencing the tragic pain of a baby being stillborn,” Booker said. “Increased federal resources for critical health initiatives will allow us to prevent a significant number of stillbirths. To that end, I am proud to introduce this bipartisan legislation that will improve federal, state, and local partnerships on stillbirth data collection and help enhance research, training, and awareness for this critical issue.”
“Losing Autumn led me to lose my faith—that is until now,” said Debbie Haine Vijayvergiya, mother to Autumn Joy for whom the bill is named and founder of the 2 Degrees Foundation. “Watching this issue receive such overwhelming support over the past few months has been healing for my soul. I wholeheartedly commend the bipartisan effort to advance the SHINE for Autumn Act and am deeply grateful to Senator Cory Booker and Senator Marco Rubio for championing this critical piece of legislation in the Senate. At the end of the day, losing tens of thousands of babies every year should not be acceptable. We have a responsibility to understand why stillbirths are happening and identify what can be done to combat this crisis. We can no longer ignore this issue. We can, and must, do better for our future moms and children. The time has come for us to SHINE a light on stillbirth so that we can bring this tragic maternal and family health issue out of the shadows once and for all!”
“Thank you Senators Booker (D-NJ) and Rubio (R-FL) for your leadership in introducing the Stillbirth Health Improvement and Education (SHINE) for Autumn Act. This bill will help ensure our moms and babies have the healthiest start possible. Every year, about 23,500 babies are stillborn and the mothers of those babies face a greater likelihood of severe illness or death. The SHINE for Autumn Act is the next step in preventing stillbirth by helping create long-term solutions and cultivating a greater focus on preventing stillbirths through enhanced data collection, analysis, reporting, and research. March of Dimes looks forward to working with the Senate to ensure this bipartisan bill becomes law,” said Stacey D. Stewart, President and CEO, March of Dimes.
“Preeclampsia and related hypertensive disorders of pregnancy disproportionately affect women of color, and are a leading cause of maternal and infant illness and death, including stillbirth. The Preeclampsia Foundation is so pleased to support the bipartisan Stillbirth Health Improvement and Education (SHINE) for Autumn Act to finally address preventable stillbirth and end this silent epidemic in the U.S. We are grateful to Senators Booker and Rubio for their effort to lead on this important issue, and we advocate for the Senate to follow the House’s action and pass the bill this year!” said Eleni Tsigas, CEO, Preeclampsia Foundation
Specifically, the SHINE for Autumn Act would authorize:
- Grants to states to support data collection and reporting on stillbirth and stillbirth risk factors.
- The Department of Health and Human Services (HHS), in coordination with health care providers, to develop guidelines and educational materials for state departments of health and statistics on stillbirth data collection, data sharing, and educational materials on stillbirth. These educational materials must be published on the Department’s public website for public use and awareness.
- The establishment of the Perinatal Pathology Fellowship Program at the NIH to fund research fellowships on stillbirth, including research and training on fetal autopsies and improved education, research, and data collection.
- A report on the effectiveness of the Perinatal Pathology Fellowship Program after five years of enactment
A full list of organizations endorsing the bill can be found here.