New York Times
March 5, 2014
Parents’ Fight Against Sepsis Reaches C.D.C.
By Jim Dwyer
There it was: an A to Z index on the website of the Centers for Disease Control and Prevention. One morning, Ciaran and Orlaith Staunton of Queens turned to the S page. Somewhere between seasonal flu and sexual health, they were sure, they would find sepsis. It is among the leading causes of death in the United States, taking far more lives than the best-known cancers or heart attacks or criminal violence.
The interest of the Stauntons was not academic. Their son, Rory, 12, died in April 2012 after he was sent home from the emergency room at NYU Langone Medical Center with undiagnosed and untreated sepsis.
“Until Rory died, we had never heard the word sepsis,” Mr. Staunton said. “You will not find the word sepsis on the A to Z of the C.D.C.”
Sepsis is what happens when the body’s own responses to an infection spin out of control, destroying cells and blood vessels. This leads to shock, organ failure and death. The sooner treatment begins, the better the chances of survival. That and many other aspects of sepsis remain poorly understood. After a campaign by the Stauntons, the New York State Department of Health issued new regulations, which went into effect at the end of 2013, requiring hospitals to adopt techniques for early identification and treatment of sepsis. They are among the most rigorous regulations in the country.
In January, the Stauntons wrote to Dr. Thomas Frieden, who as director of the centers is one of the nation’s top public health officials. They detailed the research on successful approaches to reducing sepsis deaths. “The C.D.C. needs to demonstrate a leadership role in the education and treatment of sepsis,” they wrote, adding that the centers were “negligent in their duty to inform the public and to insist on sepsis protocols being in place at all medical facilities throughout the United States.”
They met with Dr. Frieden. Traveling with them was Dr. Martin Doerfler, the associate chief medical officer for the North Shore Long Island Jewish Health System, which includes 16 hospitals in and around New York City, and which has reduced its mortality rate from sepsis by 50 percent over the last five years.
“The C.D.C. has a whole pamphlet on children with cancer and serious infection,” Dr. Doerfler said. “And they die of septic shock. The words ‘septic shock’ aren’t used.”
There is an especially vexing issue with sepsis treatment: When a person shows certain symptoms suggesting the early stages of sepsis, the protocols call for administering antibiotics before it is certain the person has a bacterial infection. It can take up to 48 hours for a blood culture to reveal a specific bacteria. The mortality rate from sepsis increases by 7 percent for every hour that antibiotic treatment is delayed. But public health officials say that antibiotics are losing their effectiveness because too many patients who don’t need them are getting them, or are being given the wrong ones. Dr. Frieden released a report on Tuesday saying that about one in three prescriptions for urinary tract infections were erroneous, and that other mistaken antibiotic use was making it harder to treat an infection that causes severe diarrhea.
Was the new guidance from the centers in conflict with protocols for treating sepsis? Absolutely not, Dr. Frieden said, though he acknowledged there could be confusion. What New York State was doing, he said, made sense: Start the antibiotics, and then look at the results of the blood tests to see if they should be adjusted or stopped.
“Anytime someone has suspected sepsis, they should be evaluated promptly and treated promptly,” Dr. Frieden said. “And if you look at the very strong sepsis protocols out of New York State, they have in their protocol get the diagnostic work-up promptly, start treatment promptly, and have a systematic re-evaluation. And that’s exactly what we’re calling for.”
The agency is going to create a web page on sepsis, and consult with research centers and with New York State on the results of regulations, Abbigail Tumpey, a spokeswoman for the centers, said. “We haven’t been there on sepsis, and we’re going to continue to improve.”
NYU Langone, which sent Rory Staunton home in a hail of errors described in an About New York column and a federal report, has cut its sepsis mortality rate significantly, according to Lisa Greiner, a spokeswoman for the hospital.