On September 16, 2022, Ciaran Staunton traveled to Berlin to deliver the keynote address at the World Sepsis Day conference hosted by the Global Sepsis Alliance, titled ‘Making Sepsis a National and Global Health Priority – Celebrating a Decade of World Sepsis Day’. Viewers from 172 tuned in to view the event which was opened by the Director General of the World Health Organization, Dr. Tedros Adhanom Ghebreyesus.
Here are Ciaran’s his remarks.
Good morning to everyone here today and a special welcome to those watching around the world. My thanks to the Global Sepsis Alliance and the German Sepsis Foundation for inviting me to address you today and congratulations on organizing such an impressive event.
For those of you who don’t know me, my name is Ciaran Staunton.
My son, Rory, died 10 years ago at the age of 12 from undiagnosed and untreated sepsis in a major New York City hospital.
Rory was a very healthy child. He was 5ft 9 tall and 160 lbs. One day, he scraped his arm playing basketball at school. Overnight, he spiked a fever and the next day we brought him to his pediatrician and then to the emergency department where each medical professional who examined him dismissed our concerns and sent him home with a diagnosis of ‘gastric flu’. Rory, however, was very sick and the following day when his symptoms worsened, we returned to the hospital where he was admitted to the ICU. On Sunday April 1st, 2012 he died from sepsis.
When we were told that Rory died from sepsis, we had never heard the word. In fact, as Rory lay dying in the hospital the word ‘sepsis’ was never even uttered.
We discovered that if his condition had been accurately diagnosed when we first sought medical attention, he would be alive today. I have given many speeches about Rory’s death but I will never be able to verbalize the agonizing pain of child loss and the struggle to keep going, particularly when we think: His life could have been saved.
Tragically, since Rory’s death, we have heard different versions of his story repeated again and again: patients and families who had never heard of sepsis, symptoms missed and concerns dismissed by healthcare providers, lives needlessly cut short, families left broken.
After Rory’s death, we learned that in the United States alone sepsis kills over 350,000 people every year. It kills more Americans than AIDS, prostate cancer, breast cancer and opioids combined.
Shortly after Rory died, my wife Orlaith and I established END SEPSIS, the Legacy of Rory Staunton. Our goal was to ensure that what happened to our family would never happen again.
Here’s what we discovered about sepsis in the United States:
- There was no federal, state, or city government policy or mandated measures on sepsis
- There was no widespread use of sepsis protocols in hospitals
- The nation’s public health agency had no policy or directives on sepsis and no campaigns aimed at improving public awareness
- There was no education on sepsis in schools
- The internet was almost silent on the subject
In a nutshell, in the US there was no template or plan on how to tackle this killer in our midst.We had to start from scratch.
I’d like to tell you a little about our work over the past 10 years–both what we have achieved and what we hope to achieve moving forward to advance sepsis prevention and care in America and beyond.
First I’d like to address the importance of personal stories in this fight.
After Rory died, we told our story repeatedly to national and international media. Rory’s story was written about on the front page of the New York Times and other major publications. We quickly realized that the shocking sepsis statistics did not seem to penetrate people’s busy lives, but our story had a big impact. It was also much harder for policymakers to shrug off the pleas of shattered parents and children.
We formed the National Family Council on Sepsis, a coalition of impacted families, as a unifying force, an army of soldiers heroically willing to relive their pain again and again for the cause of saving lives.
First, we took our campaign to Washington D.C., knocking on doors, sharing our story, asking why nothing was being done. As a result, the United States Senate held its first ever hearings on sepsis in 2014.
We also began to engage with the CDC–the national public health agency. After Rory’s death, we had visited the CDC website, desperate to understand what had killed our child. We found nothing in their A-Z index for sepsis–no information on a condition that was killing hundreds and thousands of Americans each year. To us, this omission cut to the heart of the sepsis problem–it was a crisis that most people seemed to be doing their best to ignore.
In 2013 we held the first National Forum on Sepsis in Washington. For the first time politicians, federal agencies, and patient advocates were brought together in one room, acknowledging the problem and making pledges to find a solution.
Despite these steps forward, it was painfully clear that little meaningful action was being carried out by the federal government and there was little appetite to enact change.
III. New York State/Protocols
Back in New York State our efforts focused on changing hospital policies to ensure that when a sepsis patient enters a hospital, they are met by healthcare professionals who know the signs of sepsis, know to look for it, and know to treat it as the medical emergency it is. Something that had been denied to Rory and that cost him his life.
We formed a coalition of agencies and organizations to tackle the issue of sepsis in good faith. These efforts resulted in Rory’s Regulations, a pioneering directive that requires hospitals to:
- Develop evidence-based protocols for the early identification and treatment of sepsis and submit them to the New York State Department of Health for approval
- Educate providers on the protocols
- Publicly report outcomes by the facility
These protocols ensure the rapid diagnosis and treatment of sepsis with antibiotics and fluids–and most importantly include an accountability mechanism that is often missing from this kind of measure. Rory’s Regulations require that the Department of Health audit all hospitals and report actionable, benchmarked data back to hospitals quarterly to foster local improvement.
It is crucial that these measures are compulsory and that an accountability mechanism is in place. We need to ensure that all patients are receiving the same treatment regardless of what hospital they enter–and that hospitals know that there are consequences if they fail to adhere to the protocols.
The regulations also include a Parents’ Bill of Rights designed to improve communication with parents and caregivers and ensure that test results are received and reviewed before discharge–something that would have certainly saved my son’s life.
We now know that Rory’s Regulations saved over 16,000 lives between 2015 and 2019. Furthermore, pediatric mortality decreased by 40% when the treatment bundle was administered within an hour of sepsis recognition.
Another important policy shift in New York State has been the creation of Rory Staunton’s Law. This requires all professionals working in a healthcare-related profession to undertake infection prevention training. Rory Staunton’s Law now covers more than 468,000 workers across the state.
IV. Federal Action
New York’s regulations are America’s most effective sepsis policies to date, yet their expansion to the rest of the country has met with resistance. We know that the real solution is a nationally mandated approach to the identification and treatment of sepsis and the funds and resources to support it. In short, we are fighting for sepsis to be treated as the national public health crisis that it is.
But there is reason for optimism. END SEPSIS is currently working with a stellar group of committed experts as passionate as we are about ending the sepsis crisis. We have worked to create a framework for a national approach to sepsis–with funding crucially attached–and have held meetings at the highest levels of government, building consensus across agencies and Congress. We hope to make some announcements on this work in the very near future.
Furthermore, on September 13th, World Sepsis Day, Senator Charles Schumer, the Democratic leader of the Senate, spoke about sepsis on the Senate floor–an historic first. The Senator spoke to the gravity of the sepsis crisis and the need for a national approach to combat it. He urged federal entities to do better in terms of treatment guidelines and allocation of resources, and he strongly advocated for Rory’s Regulations to inform a national model of care.
He also proclaimed September 13th to be National Sepsis Day, which will align the United States with World Sepsis Day and provide an excellent opportunity to increase awareness.
V. Education & Awareness
Of course, strong policy initiatives are only half the battle. We know that in the United States sepsis originates outside the hospital for 87% of cases and therefore public awareness of sepsis is essential.
Our public awareness initiatives rely heavily on communicating personal stories. Our awareness strategy consists of public service announcements, social media campaigns, and traditional media campaigns. We develop relationships with healthcare groups, professional associations, and labor unions to collaborate and share our message to a broad audience.
Most recently we developed a major campaign to increase awareness of maternal sepsis among patients and providers.
The US has the highest rate of maternal sepsis of any wealthy nation, and sepsis is the second leading cause of maternal death. With funding from the federal government, we worked with the New York State Department of Health to identify and produce educational materials to target those at higher risk. These include pregnant women of color, very young pregnant people and those who underwent C-section deliveries.
We also partnered with a major teachers and nurses union to develop a K-12 education curriculum that teaches school-age children about infection prevention and sepsis in age-appropriate ways.
I hope that my remarks today have been helpful to others engaged in this fight. While the challenge of sepsis differs in each country and region, we believe that some of our approaches can be implemented by other groups across the world.
Our recommendations include:
- Lead with the personal–reach people through the stories and grief of those shattered by this condition
- Refuse to be sidelined or silenced. Commit to holding leaders accountable for as long as it takes to get the policies we deserve
- Demand a national response to sepsis. In America it is our firm belief that mandated hospital measures are the best chance we have of bringing down the sepsis death toll and we will continue to pursue this strategy
- Work to ensure that we can all can identify the signs of sepsis and seek immediate medical treatment
We call on all governments and all in the medical and public health community to step up and change behavior to meet this challenge. It’s too late for our family but other families can be spared our pain. Finally we look forward to working closely with the Global Sepsis Alliance and other organizations and representatives in this room to create a world without preventable deaths from sepsis.
The urgency is now.