There’s a disease you’ve likely never heard of that kills more people every year than breast or prostate cancer.
In fact, it accounts for 4 in 10 hospital deaths, but less than half of people in the United States have ever heard of it.
Patti Alber, 54, and Ashley Gallegos, 27, were unaware of it until the illness took them to death’s door.
Alber felt fine on Memorial Day in 2013 as she enjoyed a local parade in North Conway, New Hampshire. Afterward, she decided to take a nap before heading to her job at a restaurant that evening. But she woke up in the worst pain of her life.
The skeleton crew of doctors on duty at her local hospital said Alber had a kidney stone and advised her to go home and wait for it to pass. The next morning, perhaps rethinking that diagnosis, one of the doctors called to see how Alber was doing. She wasn’t well at all and returned to the hospital.
The last thing Alber remembers is the doctors and nurses gawking at her as they realized that their blood pressure machine wasn’t broken — her pressure was that low. She was quickly flown by helicopter to Maine Medical Center in Portland and put into a medically induced coma for 10 days while she was treated for septic shock.
Alber remained in the hospital almost until the Fourth of July. Because she was uninsured at the time, Alber owes the hospital a bill that she and her husband believe they will never finish paying.
She has chronic kidney disease because of the septic shock and has had eight fingers and 10 toes amputated. Her doctors think she may need to have her legs amputated to the knee.
At least she’s starting to feel like herself again, she told Healthline.
From the Wedding Chapel to the Hospital
Ashley Gallegos had been feeling “off” for a few weeks, but she was determined to make it through her cousin’s wedding in September because she was the maid of honor.
That morning, a Friday, she threw up repeatedly. She had trouble standing and was saying things that didn’t make sense, her family later told her. Though she barely remembers her speaking parts at the Lake Tahoe wedding, Gallegos managed to get through it.
The next morning, she went to a nearby urgent care center. The doctor told her she probably had meningitis and should get a blood test to confirm on Monday.
If she had waited, Gallegos would almost certainly have died. Instead, she went to the hospital again the following day as she returned to her home in Sacramento. By then she was shaking uncontrollably.
Thanks to a nurse with a hunch, Gallegos was correctly diagnosed with severe sepsis. She spent 10 days in the intensive care unit, much of it on a ventilator.
Even now, six months later, she has trouble sleeping and her lung function hasn’t recovered completely.
Both Alber and Gallegos are among the lucky ones who survive sepsis.
“Between a quarter and a third of patients who have this condition will die, and that’s despite getting all the best care,” said Dr. Jonathan Cohen, an emeritus professor of infectious diseases at Brighton and Sussex Medical School in the United Kingdom.
Cohen authored a recent commission report on sepsis published in The Lancet. The report concludes that progress against sepsis has lagged behind other diseases.
‘Friendly Fire’ Causes Sepsis
Sepsis is an immune response to an infection gone haywire. It causes systemic inflammation and, eventually, multiple organ failure and death.
Dr. Jim O’Brien, an intensive care doctor at Riverside Methodist Hospital in Columbus, Ohio, and the chair of the board of directors at Sepsis Alliance, describes the condition as a kind of immunological friendly fire.
“The immune system is set up to be an army, and normally what happens is it surrounds the infection and destroys it. What happens with sepsis is that it may contain the infection, but it also turns around and starts shooting in the opposite direction,” he said. “You wind up with this cascade of destructive response.”
The condition is fairly common, despite its lack of name recognition. One in 200 Americans will be hospitalized with sepsis this year. Some come in with sepsis. Others develop it in the hospital as the secondary effect of another illness or as an infection acquired in the hospital.
Sepsis often hides in plain sight. It’s frequently called simply “complications” of something else. According to O’Brien, Jim Henson, the creator of the Muppets, and the comedian Bernie Mac both probably died of sepsis.
Doctors sometimes avoid calling sepsis by name when talking to loved ones in the hospital.
“If I go to family members as a clinician and say their loved one is dying of sepsis, I’ve just bought myself a 45-minute conversation. But if I say ‘complications,’ that avoids the conversation,” O’Brien said.
Gallegos said her doctor encouraged her family not to Google “sepsis” until she’d begun to improve. It would just add to their worry.
But with no name, it’s hard to drive more awareness of sepsis.
“After repeated episodes of having to talk to families and tell them that their loved one is dying of something they’ve never heard of, I started realizing that part of our problem is a lack of general awareness in the community,” O’Brien said.
A Medical Mystery
Though common, sepsis retains an air of mystery, even for doctors and researchers.
The initial infection that turns into sepsis can start anywhere, but the kidney, abdomen, and bloodstream are most common. No single infectious agent causes sepsis, and there’s no hard-and-fast diagnostic test. Only a combination of symptoms points doctors toward the diagnosis.
Anyone who gets an infection can develop sepsis, but those with compromised immune systems are most susceptible. Recent research suggests there may be a genetic component that makes some people more prone to the immunological friendly fire of sepsis.
Treatment consists of powerful intravenous antibiotics combined with supportive care, often including fluids and a ventilator.
Not a single new drug has been approved to treat sepsis in 20 years. Efforts to find a biomarker to use for a diagnostic test have also failed.
In fact, there are no drugs that specifically treat sepsis. Antibiotics treat only the underlying infection while doctors provide fluid and oxygen.
It’s not that sepsis has been ignored by medical research, the Lancet article argues. It’s just that “it’s a tough nut to crack,” as Cohen put it.
Still, the medical community may not be devoting enough money to cracking that nut. On a per-person basis, we spend about 1/100th of a cent on sepsis research for every per-capita research dollar we devote to HIV, O’Brien said.
“It’s as if the way we defined cancer was saying that people had an abnormal growth and providing no further information,” said O’Brien. “That’s what we’re doing with sepsis.”
Cohen also compared the lack of progress against sepsis to the dramatic medical progress against cancer.
“If you compare the number of new drugs for sepsis with the number that have come in for cancer in the last two decades, it’s an extraordinarily stark contrast,” he said. “The exact number of new drugs for sepsis is zero.”
In the Lancet review, Cohen and his co-authors argue that efforts to develop better treatments for sepsis have failed partly because different patients with different sources of infection are lumped together for clinical trials.
They say researchers should take a page from newer cancer clinical trials and divide patients into strategic subgroups, such as those based on other illnesses or on the bacteria driving the original infection.
“In developing a treatment plan in cancer, we’re now at a stage where for many types we can carry out molecular analysis and tailor-make a treatment based on the molecular signature of the cancer,” Cohen said. “We don’t do that in sepsis.”
O’Brien said doctors were “40 years behind that in terms of sepsis.”
Cohen and his colleagues argue for a new way of structuring the clinical trials where new drugs are tried. Currently, young, healthy patients like Gallegos are grouped into trials with elderly patients with a laundry list of other illnesses.
Dr. Akram Alashari works in the surgical critical care unit at the University of Florida. There are a few patients with sepsis in the unit at any given time, he said. But they couldn’t be more different.
“I see … very old, debilitated patients that come in with sepsis from nursing homes,” Alashari said.
Sometimes they’ve had sepsis before and have been left with a tracheotomy or a feeding tube or a colostomy bag.
“And then I get all of the young college kids who are in motor vehicle accidents, and they’re getting sepsis secondarily to infections from their injuries,” he added.
It’s no wonder clinical trials haven’t turned up any clear answers about what works.
“The difficulty is the signal-to-noise problem. Some of the drugs we’ve tried probably were effective in some patients,” Cohen said.
Speeding Up Treatment
Until there are new drugs to treat sepsis, the most powerful tool in a doctor’s toolkit is speed.
Yet many doctors, like those Alber and Gallegos first saw, don’t think immediately of sepsis, especially in patients who are otherwise healthy.
“Sepsis is way up there in terms of causing mortality, but it has an extremely low public profile, and it’s part of the problem because if it’s not recognized quickly enough, the chance of death goes up,” Cohen said.
For every hour that passes between when a patient develops sepsis and when doctors begin antibiotics, the victim’s chances of dying of septic shock increase 8 percent.
O’Brien believes hospitals should focus on time when dealing with sepsis, much as they have when treating heart attacks. In hospitals that do that, mortality rates dip from 25 to 30 percent to 10 percent. Just 4 percent of patients die from acute heart attacks.
“If we started by just applying the best care, mortality rates would drop,” he said.
There’s also a financial argument for doing more to fight sepsis. Sepsis patients cost the healthcare system more than those with almost any other diagnosis. All told, the disease costs $20 billion each year for hospital care alone, O’Brien said.
Underscoring the inadequacy of care, patients with severe sepsis are readmitted to the hospital within 30 days as frequently as patients with heart failure, according to a study by Dr. Darya Rudym, of the New York University School of Medicine.
The study results will be announced at the end of this month at the American Thoracic Society International Conference.
All told, said Cohen, “Sepsis is a challenge which we can’t afford to ignore.”