The National Sepsis Data Trust, Research, Outcomes, and Innovation Act, or “Lulu’s Law,” is a bipartisan, bicameral bill introduced in last year’s Congress and pending reintroduction in this year’s. Lulu’s Law directs the Department of Health and Human Services (HHS) to develop and implement a National Sepsis Action Plan aimed at eliminating the national burden of sepsis. Lulu’s Law also authorizes the creation of state Sepsis Data Trusts – repositories of de-identified sepsis-relevant patient information – which will help to answer the many unanswered questions about sepsis and improve our ability to diagnose and treat it.
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.
The United States currently has no national sepsis strategy and very little sepsis data infrastructure. For other major health concerns, like cancer, data hubs or trusts help experts understand how diseases and conditions affect the population and how diagnosis, treatment, and innovation can be improved. Lulu’s Law will help us learn about sepsis, improve diagnosis, treatment, and innovation, and organize a national strategy.
Sepsis Alliance was instrumental in bringing this bill forward to Congress and the organization continues to champion its passage.
For more information on Lulu’s Law, contact Catriona Macdonald: cmacdonald@sepsis.org.
