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In 30 years, I’ve never faced so tough a reporting challenge — and one so unexpected. Who wouldn’t want to talk about a fungus?
Last year, I began spade work on a series of articles about drug-resistant microbes: bacteria and fungi that have developed the ability to evade common medicines that we have used for decades.
Early on, I stumbled onto a compelling example. A woman in Alaska named Sari Bailey woke up one morning with green and yellow gunk coming out of her ear. Her doctor told her it was an ear infection and prescribed antibiotics. They didn’t work. Turns out she had a drug-resistant infection that rooted on her mastoid bone, just behind the ear. It nearly killed her and required multiple surgeries to clear.
Her experience showed the pronounced risk of these tenacious bugs and seemed like a good way to draw readers into a story about a very complex scientific topic. But I needed more details, and I needed context: How common was this? What was the science behind it?
When I went looking for answers, I hit my first curious wall. A hospital in Alaska declined my request to speak with a local doctor who has a lot of experience treating people with drug-resistant infections, including another woman who had been hospitalized for seven months fighting a drug-resistant staph infection.
Getting turned away is just another day at work for a reporter. But what made this incident unusual is that, in my experience, the medical community is generally eager to get the word out about public health issues.
Cultured C. auris in a petri dish. Some strains of it are resistant to all three major classes of antifungal drugs.CreditCenters for Disease Control and Prevention
From this germ of an observation grew one of the most curious aspects of our series: The rise in resistant bugs is cloaked in widespread and chronic secrecy.
As our reporting continued, we discovered it was common for hospitals, doctors and public health agencies to clam up when it came to talking about their troubles with resistant bugs, though they widely acknowledged the existence of the problem and even encouraged our efforts. This disconnect was at its most extreme when the issue turned to the subject of the first article in our series, which was published online on Saturday — Candida auris.
C. auris is a drug-resistant fungus that has emerged mysteriously around the world, and it is understood to be a clear and present danger. But Connecticut state officials wouldn’t tell us the name of the hospital where they had had a C. auris patient, let alone connect us with her family. Neither would officials in Texas, where the woman was transferred and died. A spokeswoman for the City of Chicago, where C. auris has become rampant in long-term health care facilities, promised to find a family and then stopped returning my calls without explanation.
There were rays of light. The State of New York, where many have died, told us they tried to connect us with families of people who had fallen ill, as did a Brooklyn branch of Mount Sinai Hospital. But one after another withdrew. “They’ve backed out,” a hospital official told my colleague Andrew Jacobs when we were hours from an interview with relatives of a C. auris patient who had died.
My emails to a researcher about C. auris in India, which has dealt with many cases, went unanswered, and that soon became common — emails and calls just not returned. We put a call-out on the New York Times website asking to speak to families affected by C. auris, recognizing this came with the risk of tipping off others to our work, and got nary a bite.
We came to realize that the secrecy surrounding C. auris was a big part of the story. A doctor in Spain wrote me that the hospital didn’t want bad press by seeming to be a hotbed of the fungus. I got the same message from a doctor in England. One doctor in New York told me that patients, and their families, don’t like being associated with the illness, as if they had a scarlet letter — “A” for auris.
The stakes are growing. The issue goes well beyond that one fungus. Ms. Bailey’s bacterial infection continues to plague her. This week, she will have her gallbladder removed, thanks to complications from multiple courses of antibiotics and steroids used to treat her vexing infection, her family said.
As we prepare to move ahead with more articles on drug resistance, we understand that we are tackling an issue that is so scary, it feels easy for some people to ignore, less frightening to bury.
If our series gets more people talking, that would be a victory.