The National Sepsis Data Trust, Research, Outcomes, and Innovation Act – S.4827 (Cassidy, Casey) / H.R.8865 (Sherrill), or “Lulu’s Law” – is a bipartisan, bicameral piece of proposed legislation that has recently been introduced in Congress. Lulu’s Law would authorize the establishment of a national sepsis data trust, to be housed within the Department of Health and Human Services. It would also allow states to launch sepsis data pilot programs to eventually feed into the trust.
Ana Lucía “Lulu” Haynes was a four-year-old from Montclair, New Jersey, who passed away suddenly from sepsis in 2014. She was known to her family and friends for her sweet, spunky, and bright personality. This Congressional bill has been named in her honor.
A data trust is a hub of information that can help experts – clinicians, researchers, innovators, public health officials, and others – to better understand a condition like sepsis. There is currently no central hub for sepsis-related information like there is for cancer, which means we are limited in our ability to understand sepsis – a condition that impacts 1.7 million people in the U.S. every year. By establishing this data trust, Lulu’s Law will help us learn about sepsis and, therefore, improve diagnosis, treatment, and innovation. Good data has the potential to save lives.
Sepsis Alliance was instrumental in bringing this bill forward to Congress and we continue to champion its passage. You can get involved by contacting your Congressional representatives here.
For more information on Lulu’s Law, contact Kristin DeVries, Sepsis Alliance’s Director of Policy and Advocacy: kdevries@sepsis.org.
