END SEPSIS is uniquely focused on securing a comprehensive national approach to ending preventable deaths from sepsis. We advocate for and develop innovative, pragmatic policy proposals focused on better understanding the toll of sepsis and implementing effective solutions and incentives to reduce the burden of sepsis on families, the healthcare system and the economy. We believe that the solution to the sepsis crisis lies in a coordinated approach by Congress, the White House, federal healthcare agencies including CDC and CMS, research institutions and patient advocates.

The SEPSIS Act.

On September 13th, 2024, World Sepsis Day, the SEPSIS Act was introduced in the Senate. The bipartisan bill was spearheaded by Senate Majority Leader, Chuck Schumer (D-NY) in collaboration with END SEPSIS and co-sponsored by Senator Susan Collins (R-ME) and Senator Bob Casey (D-PA).

The SEPSIS (Securing Enhanced Programs, Systems and Initiatives for Sepsis) Act aims to prevent sepsis fatalities by increasing early recognition, diagnosis, and treatment of sepsis. The legislation would lessen the devastating and costly impact that sepsis has on our hospitals, our healthcare system, and friends and families of potential sepsis victims.

Specifically, the legislation tasks the Centers for Disease Control and Prevention (CDC) with dedicated sepsis work, building on their ongoing efforts to reduce the burden of sepsis through the Hospital Sepsis Program Core Elements. The CDC’s work will include an education campaign about addressing sepsis in hospitals; improving data collection on pediatric sepsis; sharing information across HHS on sepsis quality measures; and development and implementation of a sepsis outcome measure

The SEPSIS Act would also require a report on a sepsis outcome measure by HHS and a Congressional briefing on the CDC’s sepsis activities. Finally, the SEPSIS Act includes a voluntary recognition program for hospitals who maintain effective sepsis programs or improve their sepsis programs over time. The full bill is available here.

END SEPSIS is currently working to advance the SEPSIS Act through both houses of Congress.

Other National Sepsis Policy Initiatives.

In 2021, END SEPSIS convened a distinguished panel of leading sepsis experts to spearhead an initiative to improve the diagnosis and treatment of sepsis patients through national healthcare policy. The founding group includes clinicians, academics, policymakers and families–all with deep knowledge of the epidemiology of sepsis and the policy measures that can limit the incidence of sepsis and improve patient outcomes. Visit our Expert Panel page to learn more about our panel of experts.

Since 2022, several of our policy proposals were funded in the federal budget:

• As part of the FY24 Congressional Budget, the CDC received $3 million in funding for sepsis, the largest amount ever allocated directly to combatting sepsis. The funding will be used to integrate crucial sepsis data from hospitals into the National Healthcare Safety Network (NHSN). The data will assist CDC in evaluating the effectiveness of policies and programs, such as the sepsis ‘Core Elements,’ across various healthcare facilities. This initiative not only facilitates a comprehensive assessment of sepsis care but also fosters partnerships between public and private sectors to enhance awareness and adoption of CDC’s sepsis programs. Additionally, the collaboration between CDC and the Centers for Medicare & Medicaid Services (CMS) will pave the way for the development of new quality measures tailored to adult and pediatric sepsis, further advancing the fight against this life-threatening condition.
• The FY22 federal budget included funding the Agency for Healthcare Research and Quality (AHRQ) to “conduct a comprehensive set of studies that calculate the morbidity, readmissions, and mortality related to sepsis with respect to pediatrics, maternal sepsis, nursing home care, and rehab, and the association of pandemic-related changes in the healthcare system on the burden of sepsis.” The study will also examine the annual financial costs of sepsis in the United States. These studies will remedy serious gaps in our understanding of the overall burden of sepsis. The information gathered will enable the successful allocation of resources and development of effective strategies to combat the sepsis crisis. 
• The FY22 spending bill also required that CMS, in collaboration with CDC, develop new or identify existing quality and outcome measures for adult and pediatric sepsis and that CMS and CDC coordinate to develop or identify processes to publicly report quantitative and qualitative information regarding sepsis care. Furthermore, it explicitly directs CMS and CDC to examine New York’s own sepsis hospital measures (Rory’s Regulations) when developing their own, citing their success in substantially reducing sepsis mortality through “implementation of evidence-based outcome measures, implementation of evidence-based process measures, and mandatory hospital sepsis protocols, whereby all New York hospitals must train staff to treat patients according to updated and locally developed evidence-based protocols for early recognition and treatment.” This is the first momentous step towards national sepsis outcome measures for both adult and pediatric patients–which we have been fighting for since Rory Staunton died 10 years ago.

Rory’s Regulations.

At END SEPSIS, we believe that nationwide sepsis protocols–that is, a series of directives that facilitate improved sepsis diagnosis and treatment in hospitals and other healthcare settings–are essential to ending the hundreds of thousands of preventable deaths from sepsis that occur each year in the United States.

One example of a successful protocolized approach to sepsis care is Rory’s Regulations. The sepsis regulations were introduced in New York State in 2013 on the initiative of END SEPSIS and its partners, including the New York State Department of Health, Northwell Health, the Hospital Association of New York State and the Greater New York Hospital Association. Under Rory’s Regulations, named after Rory Staunton who died aged 12 years from unidentified and untreated sepsis, every hospital in New York State is required to develop evidence-based protocols for the early identification and treatment of sepsis. Critically, the state requires sepsis outcome data to be submitted to the NYS Department of Health for review. Rory’s Regulations save thousands of lives each year. You can read more about New York’s sepsis protocols here on our Sepsis Protocols page. Per the NYS Department of Health Rory’s Regulations saved 16,000 lives in the first four years of operation.

If you or a loved one has been impacted by sepsis, please consider joining our national policy campaign. Your voice and story are powerful in winning the hearts and minds of those with the power to effect real and lasting change–and save lives from sepsis.  Email Orlaith Staunton at ostaunton@endsepsis.org to join us.