Author's note: This article was written the week of March 25. I haven't been able to find an outlet for it to be published, so I'm offering it here. It's my first attempt at science communication for a general audience. Please let me know what you think!
Last October an outbreak of fungal infections rocked the East Coast. Dozens - then hundreds - of people were falling ill, and some were dying. Medical professionals struggled to treat a disease about which almost nothing was known. Epidemiologists worked around the clock first to trace the source of the outbreak, then to monitor people who were at risk of developing the disease.
Although the story has since fallen off the news ticker, the outbreak continues to unfold. To date, 733 people in 20 states have been diagnosed with a fungal infection; of those, 53 have died. Roughly 6% of the people who received a contaminated injection have fallen ill with meningitis, stroke, or infections in the soft tissues around the injection sites. The long timeline of the outbreak is unusual. The first cases occurred just days after the patients received a contaminated injection, and yet more cases are still cropping up six months later.
The source of the outbreak was traced to epidural steroids (preservative-free methylprednisolone acetate) contaminated with fungi during production at the New England Compounding Center. The FDA has since found bacterial and fungal contamination in a variety of other pharmaceuticals produced by NECC. Although the contaminated lots were recalled in October, one to two new cases of fungal infections continue to be diagnosed each week.
Among the first responders during the early days of the outbreak was Paige Bordwine, district epidemiologist for the New River Valley. Located in the Appalachian region of Southwest Virginia, the New River Valley does not often find itself at the center of such hubbub. Bordwine is the only epidemiologist in the district office, and it was she who got the call from Virginia’s two head epidemiologists.
“You start clearing your schedule, because when you get a call that's important enough for the state epidemiologist and the medical epidemiologist to call you at the same time, you might as well clear your schedule and plan for 10, 12, 14, 16 hour days for whatever it takes,” Bordwine says. “You start making sure someone can pick up the kids, and make sure someone else can do dinner. Most epidemiologists I know that have kids have days of meals in the freezer for those types of situations.”
Meanwhile at Carilion Roanoke Memorial Hospital in nearby Roanoke, Virginia, infectious disease physician Dr. Thomas Kerkering was already tending to the trickle of patients who showed up at the hospital with an unusual kind of meningitis. “It was Monday morning, October 1st when we realized that we had two patients that had meningitis, and we weren't sure why at that point.” As news of the outbreak spread the trickle became a flood. According to Kerkering, the hospital hotline received 544 calls in the first week, and 188 people visited the Emergency Department.
“Most of the infectious disease docs were here until about 11 or 12 o'clock at night from when this started in October, at least through December,” says Kerkering. “Our infection control practitioners were following up with discharges from the Emergency Department to make sure that new symptoms did not develop - and they did that on a weekly basis.” Bordwine did the same for patients in her district. “I'm in the process of making the last call - well, the last call for now. That could change in a month if some new symptoms pops up somewhere else, I'll be talking to them again.”
Because the pathogen rarely cases infections in humans, no treatment protocols were established prior to the outbreak. The medication used to combat the infections has nasty side effects, including hallucinations and kidney damage. Physicians, pharmacists, and medical mycologists have had to develop treatment plans on the fly. Kerkering drew from experience working with transplant and immunosuppressed patients who sometimes contracted fungal infections. Still, he says “this was unprecedented. Because there were only 37 cases [reported in the medical literature], there were no data on how you really treat these things.”
A further mystery is in the fact that some spinal infections have no symptoms, and are found only because of medical imaging. It’s an open question whether everyone who received a contaminated injection should be scanned. Bordwine doesn’t think that’s possible for many patients. “In many cases, they're working, they're insured, but they are barely making enough money to cover their food bill. It's hard if you start adding medical procedures on that have co-pays.”
If an asymptomatic infection is found, it’s unclear if those patients should be treated with the side-effect laden anti-fungal medication. Not even the Centers for Disease Control knows the answer to those questions; their latest advice leaves those decisions up to individual clinicians. If an abnormality is detected on a scan, Kerkering says “you cannot make a diagnosis of an infection with an MRI scan. All of our patients who had meningitis have abnormal spinal scans, and they haven't changed even though the meningitis has, it looks like, gone away.” As such, “we're not sure what those scans actually mean at that point.”
Perhaps the biggest unknown is when the outbreak will end. “Most of the time there's a beginning, you see the light of the tunnel, and then at the end it's time to do all the paperwork”, says Bordwine. “Every time we think we're close to the end, it shifts and changes. That's hard for patients, because they want you to tell them when it's the end. That's what they expect of us. I can't give them an end.”
"Send me your data - PDF is fine," said no one ever
The public health paradox ("When public health works, it's invisible")
Let's make data a civic right
Scholarly impact of open access journals
Six months later, disease detectives still battling fungal meningitis outbreak