Accelerating research and insights to save children’s lives

Capitol at night

For more than two years, a bipartisan group of members of the U.S. Senate and U.S. House have been working on legislation that will accelerate research and offer insights that will help save children’s lives. As a parent who lost a child to Sudden Infant Death Syndrome (SIDS), and as a data analytics officer who understands the immense impact that research and insights can have, I applaud Congress for unanimously passing Scarlett’s Sunshine Act and sending a final bill to the President for his signature.

Named after Scarlett Lillian Pauley, who tragically passed away in 2017 in Pittsburgh, Pennsylvania, when she was just 16 months old, Scarlett’s Sunshine Act improves efforts to understand sudden unexpected infant death (SUID) and sudden unexplained death in children (SUDC). It supports communities in their response to infant and child death cases and provides parents and children with education and support. Through funding, the legislation will improve the case reporting of infant and child deaths, providing data to inform prevention experts and clinical care. It also funds outreach efforts to educate families on safer sleep practices, a proven way to reduce the risk of infant deaths. The legislation makes grants available to provide services to connect grieving families and creates an important support network for those that have experienced SUID and SUDC, linking families across communities. Finally, it enables the Health Resources and Services Administration to develop recommendations for standard protocols for genetic analysis. Importantly, it requires all data to be made available to researchers in a manner that protects personal privacy.

It is important legislation and it is urgently needed. Each of the approximately 3.8 million children born in the U.S. every year are at risk. Since the mid-1990s, we have lost roughly 80,000 children from SIDS-related causes. To put this into context, this is the same as losing two school buses of children every single week for the past 25 years.

This legislative effort also aligns with the work we are doing as part of our AI for Health program, where we are empowering researchers and organizations with AI to advance the health of people and communities around the world. And it further supports our work to strengthen medical understanding of the causes and diagnosis of SIDS in collaboration with Seattle Children’s Research Institute.

My family, and the families of all those affected by SIDS, SUDC and SUID, are grateful to the members of Congress who supported Scarlett’s Sunshine Act. That includes Chairmen Lamar Alexander (R-TN) and Frank Pallone (D-NJ) for negotiating the final bill, and all of the bill’s cosponsors, including Senators Bob Casey (D-PA), Johnny Isakson (R-GA), Sherrod Brown (D-OH), Doug Jones (D-AL) and Dan Sullivan (R-AK), as well as U.S. Representatives Gwen Moore (D-WI-04), Tom Cole (R-OK-04), Jaime Herrera Beutler (R-WA-3), Josh Gottheimer (D-NJ-05), Yvette Clarke (D-NY-09), Cathy McMorris Rodgers (R-WA-05), Debbie Wasserman Schultz (D-FL-23), Raul Grijalva (D-AZ-03), Ro Khanna (D-CA-17), Eleanor Holmes Norton (D-DC-At Large), Peter King (R-NY-02), Betty McCollum (D-MN-04), Matt Cartwright (D-PA-08) and Suzan DelBene (D-WA-01).

Continued research and improved data will help us unravel the mystery behind unexpected and unexplained deaths in infants and children. Thanks to Congress’ passage of Scarlett’s Sunshine Act, important progress will be made that will hopefully provide answers to so many families and help to protect the next generation of children from the dangers of SUDC, SUID and SIDS.

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