On November 3rd, 2017 Chris Aiello, Secretary for the National Family Council on Sepsis shared the story of his daughter Emily’s tragic death from sepsis and stressed the importance of early detection of sepsis and the need for community involvement to implement effective diagnostic protocols at Health Watch USA’s 11th annual Patient Safety Conference. In a compelling speech (see video), Chris told conference attendees that mandatory sepsis protocols were needed in each state. Other speakers at the conference included past U.S. Surgeon General Joycelyn Elders, Pulitzer Prize-winning investigative reporter Deborah Nelson, Lisa McGiffert from Consumer Reports and Ivan Oransky, Co-Founder of Retraction Watch.
It’s difficult to explain in a small package what sepsis is, I can find a definition but it’s impossible to describe the devastation that comes with it. When someone you love dies from sepsis, it’s often with the speed of lightning and when someone survives, it’s with devastating effects including loss of limbs.
Four years ago when Rory died, like other sepsis victims, we thought it was something rare that attacked him. We looked for answers and couldn’t find them. The Federal Government, represented by the CDC had no information,there was nowhere to go for support.
Today, because of our Foundation we have made steady progress. The CDC has now declared sepsis “a national emergency”, and the National Family Council on Sepsis exists to advocate, support and educate. We stand strong with Ann Ceschin, mom of Katie, with Liz and Tony Galbo, parents of Gabby, with Chris Aiello, dad to Emily, Vanessa, daughter to Wes and with the other families whose loved ones have died; together we are determined to remember.
Yesterday I was reminded why we go on; two messages, one from a mom, who was on her way to pick up her 17 year old daughters’ autopsy results revealing the cause of death to be sepsis, and another, a message from a young girl whose mom, she described as her best friend, had died from sepsis. Neither family had heard of sepsis or knew the signs.
So, I know we have more work to do because families are still being wiped out. When I got the honor of Women of Worth I was hesitant, because sepsis is only a tiny little bit about me, I don’t believe I need an award for what I have done, I am devastated, in fact during the photo shoot for L’Oréal, after “smiling” for hours I broke down and sobbed.
But you know what, good has come from this campaign-the circle of support has grown. I can’t give sepsis a headline or a short description but I can give it a name… “killer”. We are sick of hearing and retelling messages of death, but it’s our life, this is our cause, we would love to have heard four words before Rory got sick: “Could this be sepsis?” We didn’t know and we want to change that for others.
Because we still have so much work to do to educate about sepsis, I am asking you to continue to support our campaign for sepsis awareness, please vote in the the L’Oréal Women of Worth Campaign, we are half way through the voting period!
Please go to: and vote today and everyday through October 28th. Thank you. goo.gl/myTmAo
On Wednesday the Rory Staunton Foundation and the National Family Council on Sepsis joined the Pennsylvania Secretary of Health, Karen Murphy, State Representatives and sepsis survivors at a press conference announcing major new sepsis initiatives in Pennsylvania. We have have been working constructively with Secretary Murphy’s staff to see mandatory sepsis protocols adopted in Pennsylvania’s more than 220 hospitals and we are delighted with the state’s energetic response.
At the press conference, Pinnacle Health launched its Knock Out Sepsis Campaign, which will build on the health system’s remarkable success in reducing sepsis mortality rates by 40%.
As part of the sepsis campaign in Pennsylvania, Governor Tom Wolf also issued a Proclamation designating September as Sepsis Awareness Month and encouraged all Pennsylvanians to pursue preventive health practices and early detection efforts in order to be vigilant regarding this public health epidemic.
Following the conference, Ciaran Staunton from the Rory Staunton Foundation and National Family Council member Chris Aiello, a Pennsylvania resident whose daughter Emily died from sepsis at the age of 15, met with staff from Governor Wolfe’s office and other legislators to discuss the significant progress the state is making towards mandatory sepsis protocols. We look forward to Pennsylvania becoming a #SepsisSafe state!
Videos on Spotting Signs of Sepsis goes Viral with over Half Million Views
The Rory Staunton Foundation for Sepsis Prevention is proud to make the following public service announcements available to the public. In the videos, three parents who have needlessly lost their children to sepsis tell their story of loss, share their children’s final words and urge viewers to “know the signs of sepsis”. These precious young people could and should have been saved. If only the signs of sepsis were more widely known, they would all be alive today.
Please help us prevent more unnecessary deaths from sepsis by spreading these simple but lifesaving messages. We encourage you to share these videos throughout your networks via email and social media and at events. In the fight against sepsis, education is what matters most and everyone has a role to play.
To share: click on the arrow in the right hand corner of each video and choose your sharing platform or copy and paste the link to the video on our YouTube channel. Thank you!
Know the Signs – Katie’s Story: A Sepsis Public Service Announcement (30 seconds)
Know the Signs – Rory’s Story: A Sepsis Public Service Announcement (30 seconds)
Know the Signs – Emily’s Story: A Sepsis Public Service Announcement (30 seconds)
Know the Signs: A Sepsis Public Service Announcement (60 seconds)
The PSAs aims to bring global attention attention to the signs of sepsis which kills over 250,000 American every year and costs the healthcare system $24 million.
The 30 and 60 second formats are also ideal for television. Contact the stations in your area and ask that they be aired during breaks in programming. Please note that both the Rory Staunton Foundation and the Feinstein Institute for Medical Research are nonprofit organizations; the videos can therefore be aired as public service announcements. For support, to requests MP4 files for download, or for more information, contact Sabine Horner: email@example.com.
Beginning Tuesday, September 20th the Rory Staunton Foundation is releasing four new Public Service Announcements to spread awareness of sepsis and inform the public of the signs of sepsis.
The first PSA, released September 20th, is called Katie – A Sepsis PSA from the Rory Staunton Foundation
The second PSA, released September 21st, is called Rory – A Sepsis PSA from the Rory Staunton Foundation
The third PSA, released September 22nd, is called Emily – A Sepsis PSA from the Rory Staunton Foundation
Sepsis stole their children. These parents want to make sure it doesn’t steal yours. Watch this public service announcement from the Rory Staunton Foundation and share widely. Do you Know the Signs of Sepsis?
The Rory Staunton Foundation and National Family Council on Sepsis members, Ann Ceschin and Chris Aiello, were in Atlanta this week for a two-day meeting with the CDC and other patient advocate groups to discuss sepsis and other causes of preventable deaths.
CDC Director, Dr. Tom Frieden, declared at the meeting that “the status quo on sepsis is not acceptable”. We couldn’t agree more! We look forward to some positive developments on sepsis coming from the CDC in the near future after our productive conversations this week.
By Ashley Welsh
Published CBS News, October 5, 2015.
Last December, 26-year-old Katie McQuestion of Kenosha, Wisconsin, went to the hospital with a suspected case of the flu. Four days later, she died.
Doctors told her mother, Ann Ceschin, that her daughter, a radiology technician and newlywed of three months, had contracted sepsis and died of it, though they did not know how she became septic.
“Here was a perfectly healthy 26-year-old and it happened so quickly, she turned so quickly,” Chescin told CBS News.
Sepsis is the body’s overwhelming and life-threatening response to an infection which can lead to tissue damage, organ failure and death. It can happen to anyone with any type of infection. Though most cases occur while patients are in the hospital, people can also acquire it in the community.
Dr. Fredrick Moore, chief of acute care surgery at University of Florida Health and Director of the UF Sepsis and Critical Illness Research Center, likens sepsis to the body’s reaction to a very small, but relatable intruder: a splinter.
“If you have a splinter in your hand, you get a local inflammatory response,” he said. “You get inflammation and pus, but you don’t get sick. Now, say you get a big infection, you have that same local response, but then you also have a whole body response.”
According to the Centers for Disease Control and Prevention, there are over 1 million cases of sepsis each year in the United States. Sepsis — also known as septicemia, blood infection or blood poisoning — kills more than 258,000 Americans every year, making it the ninth leading cause of disease-related deaths.
Chris Aiello of Chestnut Hill, Pennsylvania, also lost his daughter to sepsis earlier this year. He described Emily as a vibrant 14-year-old, in spite of her cerebral palsy. She developed an infection as the result of spinal fusion surgery in May of 2015. She died of sepsis days later.
Symptoms of sepsis include the presence of an infection, as well of as at least two of the following symptoms: an elevated or lowered body temperature, a fast heart rate, a fast breathing rate and low blood pressure.
If caught early, sepsis is treatable with fluids and antibiotics. But it progresses quickly and if not treated, a patient’s condition can deteriorate into severe sepsis, with an abrupt change in mental status, significantly decreased urine output, abdominal pain and difficulty breathing. Septic shock occurs when someone has all of these symptoms plus extremely low blood pressure that doesn’t respond to fluid replacement.
Several barriers may get in the way of septic patients obtaining the care they need, including untrained hospital staff who don’t recognize the symptoms, delayed communication between doctors, and the lack of appropriate antibiotics readily available at hospitals, Moore explained.
Once a patient has been identified as septic, “the gold standard to get the appropriate antibiotics to patients is one hour,” Moore told CBS News. But in most hospitals, “processes of care are just not in place to rapidly give needed treatment. We know that once you become septic, every hour delay that the appropriate antibiotics aren’t given, the risk of morality increases.”
Aiello said his daughter Emily had a 103-degree fever and rapid heart and breathing rates. “These are classic symptoms of sepsis, but they [the doctors] waited over 14 hours to take blood to test if she had an infection. After that, it took another eight hours for the results to come back and another two hours to administer the antibiotics. A few hours later, she had coded. It was the most tragic day of my and my wife’s life.”
Like many Americans, Aiello knew little to nothing about sepsis at the time of his daughter’s death. “I had heard of the word before, but not being a medical professional, I wasn’t educated on the subject,” he said.
According to a 2013 poll by the Sepsis Alliance, fewer than half of adults in the U.S. have heard of sepsis.
Aiello, along with Ceschin and other families who have lost loved ones to the condition, are working to change that. They are members of the recently-launched National Family Council on Sepsis, an initiative of the Rory Staunton Foundation, founded by Ciaran and Orlaith Staunton of Queens, New York, in honor of their son Rory who died at age 12 from sepsis in 2012.
Click here to watch “After losing son, family fights to shed light on sepsis”
The goal of the Council is to function as a support network for those who have lost loved ones and those who have survived the illness, as well as to educate the public about the signs of sepsis.
“We want everyone to know the signs of sepsis. We want them to be as well-known as the signs of heart attack or stroke,” Ceschin said. “Looking back, knowing everything I know now, Katie had every sign of sepsis, but the doctors never thought about it. They never thought that could be it. And because of that, it progressed and she ended up passing from it. I just never want another family to go through this.”
The Council is also working to pass a set of regulations in all 50 states requiring every hospital to adopt aggressive procedures for identifying sepsis in patients. The mandate, known as Rory’s Regulations, was instituted in New York State — the only state to adopt the regulations so far — in 2013.
Setting up protocols to identify and treat sepsis in a timely manner has already proven successful in some hospitals.
Since 2009, North Shore-LIJ Health System in the New York metropolitan area has been working to reduce deaths due to sepsis within each of the approximately 20 hospitals in their network. Overall, the system has reduced its sepsis mortality by 50 percent.
“The initial focus was to assure emergency departments were trained and educated to rapidly identify sepsis,” Dr. Steven Walerstein, Senior Vice President of Medical Affairs and Associate Chief Medical Officer for North Shore-LIJ Health System, told CBS News. “Once sepsis is identified, the next step is to get those patients highlighted and targeted to make sure they don’t get lost in the craziness of the day-to-day of the emergency department and to make sure the appropriate tests are done and the appropriate treatments given as quickly as possible.”
The hospitals took performance measurements of the lengths of time it took to test patients and treat them in order to establish and share best practices, Walerstein said. Once improvements were made in the emergency departments, those protocols were instituted in the general hospital populations.
The University of Florida Health has also set up procedures for training hospital staff to recognize signs of sepsis and get patients the needed care as quickly as possible, including a system that allows paramedics to alert the hospital that they may have a septic patient before they even arrive at the ER. As a result of those efforts, the sepsis mortality rate at the hospital has dropped from 30 percent to 10 to 15 percent, Moore said.
Additionally, the UF Sepsis and Critical Illness Research Center received a grant from the National Institutes of Health last year and is currently working on ways to prevent surviving patients from having repeat sepsis infections.
“Time, energy and commitment are required,” Walerstein said, “but it’s certainly feasible for any institution to put together a sepsis initiative to improve their management of this patient population.”
By Kimberley Leonard
Published U.S. News and World Report, September 17, 2015.
Sepsis is responsible for 250,000 deaths a year in the U.S., mostly because treatment isn’t given in time.
A foundation dedicated to fighting treatable blood infections that kill 258,000 Americans each year has spent more money than the U.S. government on the cause.
Only last year was sepsis listed on the Centers for Disease Control and Prevention’s website. Once colloquially called “blood poisoning,” the illness is one of the most common causes of death in a hospital, affecting 1 million people and killing more Americans each year than AIDS, prostate cancer and breast cancer combined.
In a forum Wednesday in Washington, members of a panel hosted by the Rory Staunton Foundation, an organization that works to prevent sepsis, said hospitals needed to standardize their protocol for identifying and treating the illness.
Though hospitals are required to publicly report infections, and there are financial incentives by the government and health insurance companies to reduce infections, lack of standard protocol at most hospitals does not help doctors or nurses who cannot recognize sepsis when they see it. New York is the only state to have set procedures to lower sepsis mortality rates.
Sepsis sets in after an infection causes the body to release chemicals into the bloodstream that trigger inflammation, which damages organs and tissue, and causes them to fail.
Symptoms include fever, rapid breathing, pale skin and elevated heart rate – signs that are similar to those of other conditions like the flu or a cold, making it difficult to diagnose early.
Early diagnosis, however, is key. A patient will die if antibiotics, IV fluids and oxygen are not administered within several hours after symptoms start. Even thousands of patients who survive lose a limb after a blood clot causes tissue death, or gangrene.
Following a standard protocol that included early diagnosis would have saved the life of Chris Aiello’s daughter, Emily, who died of sepsis earlier this year. She was 14.
Emily, who had cerebral palsy but was otherwise healthy, had undergone spinal fusion surgery to straighten her spine, and it had gone well. Days later, however, her fever spiked to 103 degrees. Her health providers didn’t know she had developed a UTI, which had turned septic. Her breath rate reached 30 breaths a minute, and her heartbeat accelerated to 180 beats a minute – the rate the heart beats when someone is running.
“That’s your heart going wild,” Aiello says. “The signs were there, and they were missed. These are the classic signs of sepsis.”
Hospital staff didn’t take her blood until 14 hours after symptoms started. The results of the blood test came in 8 hours later. Two hours later, health providers gave her antibiotics. “It’s obvious to me that the hospital she was in did not have a sepsis protocol, or if they did that they didn’t follow it,” Aiello says.
Emily died 4 hours later.
“My wife and I are devastated,” Aiello says. “It’s very painful.”
Ciaran and Orlaith Staunton created the Rory Staunton Foundation in their son’s name after he died 2012 of sepsis at age 12, four days after he got an infection from a small cut on his arm when he fell at the gym. “He shouldn’t have died,” Ciaran Staunton said. “He could have been saved.”
Sepsis causes come from inside and outside the hospital. Some patients, like Emily, contract infections while recovering in the hospital from surgery, such as for a knee replacement, or after the insertion of a catheter that is infected by bacteria. Food poisoning can also be a cause.
For those involved with the Rory Staunton Foundation, discovering that their loved ones died from a preventable cause is particularly jarring, and along with it has come a commitment to change standards in hospitals, and to make sure parents and teachers recognize it when they see it – just as they would recognize the signs of someone having a heart attack.
“If we had known how to advocate for Rory in the ER he’d be alive today,” Ciaran Staunton said.
It’s unclear why sepsis hasn’t received widespread attention, despite being one of the leading causes of death in intensive care units. Like many infections, hospitals may see it as an unfortunate, but unavoidable, consequence of running a health care facility, where bacteria can be difficult to control. Fighting infections is particularly difficult for older adults, and people whose immune systems are compromised, whether because of cancer or HIV, are particularly at risk.
But several initiatives by the government, and by individual health facilities, show this attitude is beginning to change, though health providers might misunderstand messages around antibiotic use and infection control.
Jean Moody-Williams, deputy director of the Center for Clinical Standards and Quality at the Centers for Medicare and Medicaid Services, admitted that attending the forum last year changed her perspective, views and actions. “What we want to do is the right thing, and I think if we work together we’ll make sure that’s what we’re doing,” she said.
The Department of Health and Human Services has touted fewer deaths from infections contracted inside the hospital, while at the same time encouraging health care providers to reduce the number of antibiotics they prescribe to halt the spread of bacteria that has become immune to it. It is estimated that 2 million Americans are infected each year by antibiotic-resistant bacteria, and 23,000 die from it.
More than half of all hospitalized patients take an antibiotic at some point during their stay, even though 30 percent to 50 percent of antibiotics prescribed in hospitals are not necessary or are given incorrectly, according to the Association for Professionals in Infection Control and Epidemiology. The result is that medication becomes less effective.
The paradox, however, is that when antibiotics are prescribed correctly, they can save the life of someone with sepsis. Health care providers under pressure to think more carefully about how they prescribe antibiotics may overcompensate by not providing them when they are truly needed.
The probable confusion isn’t lost on public health officials. Moody-Williams acknowledged during the panel at the forum that one concerns about sepsis initiatives is that they would increase antibiotic usage. She encouraged providers, however, to think about antibiotic “stewardship,” a focus on correctly identifying when antibiotics should be administered, rather than simply administering them more often.
Dr. Martin Doerfler, senior vice president of clinical strategy and development at North Shore-LIJ Health System, also points out that stewardship means antibiotics can be started, and depending on blood test results health providers can decide whether to continue, adjust or stop giving them to a patient.
During Wednesday’s forum – the Rory Staunton Foundation’s second annual – members of the panel challenged the CDC to do more to help combat the problem.
“The CDC budget does not include sepsis as part of their line item expenses,” Orlaith Staunton said. “To us that indicates we are not a priority. … Shame on you.”
Sen. Chuck Schumer, D-N.Y., said at the forum that he was meeting with Dr. Tom Frieden, director of the CDC, Wednesday afternoon.
“You can be sure the first thing I’m talking to him about is getting dedicated funding for sepsis from CDC,” he said.
New ways for testing for infection are going to market. A test for a biomarker called Procalcitonin, or PCT, is becoming more widely used in hospitals since it was first introduced by its manufacturer, bioMérieux, in 2008. The company then in 2013 introduced VITEK MS, a medical device that identifies 193 different yeast and bacteria known to cause illness in less than a minute.
Most lab tests, like those for blood or urine, or imaging tests such as an ultrasound often take too long – up to days when a patient with sepsis has only hours to live.
As part of its efforts, the Rory Staunton Foundation announced Wednesday that it had set a 2020 goal to implement “Rory’s Regulations,” an aggressive set of hospital procedures. It includes the use of a countdown clock to start treatment for children within an hour of detecting sepsis, training for staff on how to care for patients who have it, and reporting of quality measures.
Some hospitals have been successful at implementing protocols. Kaiser Permanente in Northern California reduced mortality from sepsis by 40 percent from 2008 to 2011, saving more than 1,400 lives. Regions Hospital in Minnesota launched initiatives that led to a more than 60 percent drop in sepsis mortality from 2005 to 2011. Stony Brook University Medical Center’s campaign reduced sepsis mortality by 49 percent from 2006 to 2010.
Still, advocates say a standard across all hospitals is necessary. “There is inconsistency across our hospitals, and we need to drive that change,” said Ann Ceschin, whose daughter, Katie, died from sepsis at age 26, just months after getting married.
Aiello agrees that more hospitals need to set protocols, and says it needs to happen even before more lives are lost.
During Emily’s final days of life, he felt health care providers’ hesitancy over prescribing antibiotics.
“The cost of making the wrong assumption is death,” he said.