Washington, DC– Representative Mikie Sherrill (NJ-11), alongside Senators Bob Casey (D-PA) and Bill Cassidy (R-LA), introduced the Sepsis Data Trust, Outcomes, and Innovation Act or “Lulu’s Law.” This bipartisan, bicameral legislation would establish a voluntary system to compile data related to strains of bacteria that cause sepsis, the body’s response to the infection, and genetic factors that contribute to having sepsis. This is data that can be used to improve prevention, treatment, and patient care.
“New Jersey has the second highest sepsis mortality rate in the United States, with Essex County having the highest sepsis mortality rate in New Jersey. A young girl from my district, Lulu, tragically passed from sepsis in 2014,” said Rep. Sherrill. “That’s why during Sepsis Awareness Month, I am especially proud to introduce this commonsense legislation, named in Lulu’s honor, aimed at expanding research to improve patient care, saving lives, and helping combat this extreme life-threatening complication stemming from infection.”
“Information sharing is central to the success of recent cancer research. That same approach is needed for sepsis,” said Dr. Cassidy. “Our bill bridges gaps in sepsis treatment in hopes to save more lives.”
“Clinicians, researchers, innovators, and others fighting sepsis on the front lines cannot manage what is not measured,” said Thomas Heymann, President and CEO of Sepsis Alliance. “Better sepsis data collection will allow us to answer some of the most fundamental questions about this deadly condition. Eventually, it will enable us to diagnose sepsis more quickly, predict who is most at risk, understand which treatments work best, target our use of antimicrobials, close inequitable care gaps, and innovate to deliver the best possible patient outcomes.”
“I am deeply grateful to Congresswoman Sherrill for introducing and attaching Lulu’s name to this historic legislation that will improve sepsis care and help spare other families the shock and grief of losing a child,” said Lukas Haynes, Lulu’s father and member of the Sepsis Alliance Board of Directors. “Lulu's Law will accelerate innovation to prevent, diagnose, and treat patients, and support survivors. We are also grateful to the bill's bipartisan co-sponsors in the U.S. Senate and everyone at Sepsis Alliance for their work on the bill. We look forward to celebrating its passage as soon as possible."
“The more we know about sepsis infections, the more we can prevent future tragedy. This bill would provide much-needed data, improve patient care and save lives,” said Senator Casey.
According to the Sepsis Alliance, approximately 30% of patients diagnosed with severe sepsis do not survive. Up to 50% of survivors suffer from post-sepsis syndrome. Until a cure for sepsis is found, early detection and treatment is essential for survival and limiting disability for survivors.
Once enacted, the U.S. Secretary of Health and Human Services will establish a national sepsis data trust and support state-based programs. All patient data in the trust will be anonymous and privacy-protected. Read the bill text here.
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