There’s been an extraordinary outbreak going on over the past few months here in the United States: cases of fungal meningitis, a rare illness, primarily caused by Exserohilum rostratum, a plant pathogen that is equally rare as a cause of human infections. Since the beginning of October, 541 people have been made ill by the infection, in 19 states, and 36 have died. The cause has been traced to contamination in steroid injections for pain relief, made by a compounding pharmacy in Massachusetts which — according to federal investigative reports — was operating outside the lines of what compounding pharmacies are allowed to do. More than 14,000 people are believed to have received the shots.
I haven’t been covering the outbreak because I’ve been following other stories, and also because friends in the mainstream media, particularly the excellent health-science team at the Boston Globe, have been covering it well. (Here’s an archive from their paid site and one from their free site.) But last night I happened to get a close and moderately exclusive look at this complex story, so I thought I’d share.
The back-story: I am on the board of the Association of Health Care Journalists. One of the many things AHCJ does is to offer grant-funded training programs and fellowships for writers. This week, our 2012-13 Regional Fellows (who are funded by the Leona M. and Harry B. Helmsley Charitable Trust and this year come from Tennessee, Mississippi, Alabama, Florida, Georgia and South Carolina) are getting an inside look at the operations of the Centers for Disease Control and Prevention here in Atlanta. Last night, the group got a personal briefing on the meningitis outbreak from Dr. John Jernigan, who is the CDC’s director of the Office of Health Associated Infections Prevention Research and Evaluation, and the clinical lead in the meningitis investigation.
When we follow disease investigations in the media, we tend to focus on the detective story: who got sick, how many of them there are, and how the cause was found. Once those questions are answered, for many reporters, the story is over. But what struck me, in Jernigan’s description of this outbreak, is that this story will continue long after most of the reporters covering it have moved on to other issues. These patients, it turns out, are facing unusually lengthy, high-dose, toxic and expensive treatment, with uncertain odds of success. Months after the injections were delivered, he said, it isn’t possible to say that any of these patents are cured; in fact, at this point, no one can say just how “cure” will be defined.
I live-tweeted Jernigan’s chat as it was delivered to our small group, and made a Storify of it afterward to share. Here you go.