END SEPSIS, founded by the Staunton family, is uniquely focused on bringing about comprehensive national policy solutions to address the sepsis crisis. 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.

Rory’s Regulations.

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.

National Sepsis Policy Initiatives.

END SEPSIS is committed to 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, realistic 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.

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.

In 2022, several of our policy proposals were funded in the FY23 Senate Appropriations bill. 

• 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 requirement 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.

The expert panel is now working on policy priorities for 2023/2024. The group is focused on utilizing components of the CDC’s successful antimicrobial resistance initiative to advance care and improve outcomes for sepsis patients. It is also working to improve sepsis data collection and reporting practices to be able to better assess the impact of sepsis policies and programs and to examine improvement activities for hospitals performing in the bottom quartile, among other measures.

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.