September 13 marks World Sepsis Day, an initiative by the Global Sepsis Alliance to raise sepsis awareness each year during Sepsis Awareness Month.
However, raising sepsis awareness continues year-round for the New York-based nonprofit End Sepsis, which was launched by Irish parents Ciarán and Orlaith Staunton after their 12-year-old son Rory died from preventable sepsis.
“His death taught us that the fight against sepsis cannot begin only when a patient reaches the intensive care unit,” the Stauntons now say. “It must begin wherever the first signs of infection and illness appear.”
Throughout their advocacy, the Stauntons have learned that "most people first hear the word sepsis in an emergency room or intensive care unit." They are now working to change that.
(L to R): Orlaith Staunton, Rory Staunton, Kathleen Staunton, and Ciaran Staunton.
What is sepsis?
According to the US Centers for Disease Control and Prevention (CDC), sepsis is the body's extreme response to an infection, a life-threatening medical emergency. Sepsis happens when an infection a person already has triggers a chain reaction throughout the body.
Bacterial infections cause most cases of sepsis, but it can also be a result of viral infections, such as influenza, and fungal infections.
Infections that lead to sepsis most often start in the gastrointestinal tract, lung, skin, or urinary tract.
Without fast treatment, sepsis can quickly lead to tissue damage, organ failure, and death, the CDC says.
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The impact of sepsis in the US
Each year, about 1.7 million adults and more than 18,000 children in the US develop sepsis. At least 350,000 adults and more than 1,800 children who develop sepsis die during their hospitalization or are discharged to hospice.
The financial toll is staggering as well. The Agency for Healthcare Research and Quality's Healthcare Cost and Utilization Project report, published in February, found that septicemia was the most expensive condition treated, amounting to $60.0 billion, or 10.9% of aggregate costs for all hospital stays in the US in 2022.
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End Sepsis
Through the work of End Sepsis, formerly known as The Rory Staunton Foundation, the Stauntons have spearheaded a number of their own initiatives, including the National Forum on Sepsis, the End Maternal Sepsis campaign, and a sepsis curriculum for school students and staff.
In 2013, End Sepsis led the successful effort to make New York State the first in the nation to establish a statewide mandate requiring all hospitals to adopt sepsis protocols, known simply as "Rory's Regulations." In 2022, the New York State Department of Health reported that mandatory sepsis protocols had saved 16,000 lives in five years in the state.
The SEPSIS Act
More than a decade into their advocacy, the Stauntons want to see action at the federal level. While maintaining work on their various initiatives, the Stauntons are focused on getting Congress to pass the Securing Enhanced Programs, Systems and Initiatives for Sepsis (SEPSIS) Act (S.1929 and H.R. 7116).
The Act cites Rory's Regulations as having been "proven to save lives through rapid identification and treatment of sepsis."
If passed, the Act would task the CDC with dedicated sepsis work, building on their ongoing efforts to reduce the burden of sepsis through the Hospital Sepsis Program Core Elements, which was championed by End Sepsis and the Stauntons.
Through the SEPSIS Act, the CDC's work would include:
- An education campaign about addressing sepsis in hospitals
- Improving data collection on pediatric sepsis
- Sharing information with HHS on data collection, including CMS on sepsis quality measures
- Development and implementation of a sepsis outcome measure
The SEPSIS Act would also require a report on the development and implementation of a sepsis outcome measure, and a Congressional briefing on CDC's sepsis activities.
Additionally, the SEPSIS Act would include a voluntary recognition program for hospitals that maintain effective sepsis programs or improve their sepsis programs over time.
Overall, the legislation aims to help reduce the burden that sepsis has on the healthcare system and on the families who have lost loved ones to sepsis.
The SEPSIS Act is unique in Washington's current political climate in that it has garnered support from members of both parties in both the Senate and the House of Representatives.
However, with the US midterm elections looming and a new Congress set to begin in January, time is running out for the SEPSIS Act in its current form to get passed.
The Stauntons are encouraging people across the country to contact their local representatives to encourage them to take action on the SEPSIS Act. The End Sepsis website has an online tool to help people contact their representatives, or people can reach out directly to Ciarán via [email protected] for guidance on how to take action.
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Knowing the signs of sepsis
Meanwhile, End Sepsis continues to advocate for a wider public understanding of the signs of sepsis.
"We do not expect members of the public to diagnose sepsis," the Stauntons acknowledge, "But everyone should know that an infection accompanied by a sudden or worrying decline requires urgent medical attention."
Warning signs of sepsis may include:
- Confusion, unusual sleepiness, or difficulty waking
- Shortness of breath or very rapid breathing
- Fever, shivering, or feeling extremely cold
- Severe pain or discomfort
- Clammy, sweaty, pale, or discolored skin
- A rapid heartbeat
- Very little urine
- A feeling that something is seriously wrong
The risk of developing sepsis can be reduced by practicing good hygiene, including washing hands regularly, caring for even minor cuts and scrapes using basic first aid techniques (especially keeping wounds clean), and by staying up to date on vaccinations.
The Stauntons, through End Sepsis, maintain that while the public can and should learn the signs of sepsis, healthcare systems have a duty to respond.
"Hospitals must have strong sepsis protocols, properly trained staff, clear systems for escalation, and a culture that listens to patients and families," the Stauntons say.
"When a parent says, 'This is not normal for my child,' that concern should be treated as important clinical information."
*You can learn more about End Sepsis on its website, Facebook, X, Instagram, and LinkedIn pages. If you or a loved one has been impacted by sepsis, End Sepsis encourages you to share your story on its online form here.
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