Changing the Sepsis Data Landscape: “Lulu’s Law” Introduced in Congress

Ana Lucía “Lulu” Haynes was a healthy child from Montclair, New Jersey, who was known to her family and friends for her sweet, spunky, and bright personality. She attended preschool and loved activities such as dancing and skiing. In 2014, Lulu passed away suddenly from sepsis after an appendectomy. She was just four years old.

Now, a bipartisan, bicameral bill focused on improving sepsis data collection has been introduced in Congress, and it’s named in Lulu’s honor. The National Sepsis Data Trust, Research, Outcomes, and Innovation Act (S.4827/H.R.8865), or “Lulu’s Law,” would authorize the establishment of a national sepsis data trust within the Department of Health and Human Services (HHS) and would enable states to launch sepsis data pilot programs to eventually feed into the trust. This would give healthcare professionals, researchers, innovators, public health officials, and others fighting sepsis on the frontlines access to critical information about sepsis – which could save many lives and limbs. The legislation is jointly sponsored by Congresswoman Mikie Sherrill (NJ-11), representing Lulu’s district, and Senators Bill Cassidy (R-LA) and Bob Casey (D-PA).

Sepsis, the body’s overwhelming and often life-threatening response to infection, constitutes a major public health concern in the United States. It affects 1.7 million people in the U.S. each year, taking the lives of over 350,000 adults and 6,800 children. It leaves many more survivors with amputations, post-sepsis syndrome, and other long-term effects.

For other widespread health problems, like cancer, data hubs or trusts allow for the reporting, tracking, and sharing of privacy-protected condition-related data at the national level. These informational hubs help experts understand how diseases and conditions affect the population, what progress has been made, and what therapies are still needed. Diagnosis, treatment, and innovation strategies can improve and adjust accordingly. But there is no such data hub for sepsis, so we lack critical information about the condition that remains the leading cause of death in U.S. hospitals. Lulu’s Law would change this landscape.

“It is very special to have Lulu’s name attached 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. “More than 1.7 million people in the U.S. are diagnosed with sepsis each year – one every 20 seconds – and the incidence is rising. Lulu’s Law will establish a national sepsis data trust to improve care and accelerate innovation to prevent, diagnose, and treat patients and support survivors. We are grateful to the bill’s bipartisan co-sponsors, their staff members, and everyone at Sepsis Alliance for their work on the bill. We look forward to celebrating its passage as soon as possible.”

“Clinicians, researchers, innovators, and others fighting sepsis on the front lines cannot manage what is not measured,” said Tom Heymann, President and CEO of Sepsis Alliance, in the press release distributed by Representative Sherrill’s office. “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.”

Together, in honor of Lulu’s memory and helping spirit, we can identify areas for improvement and prevent future loss of life from sepsis.

Before Lulu’s Law becomes a reality, it needs more Congressional support. Contact your Congressional representatives today and ask them to cosponsor and support this lifesaving piece of legislation.