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Massachusetts officials are learning more about the cause of a meningitis outbreak. The nationwide death toll stands at 23 now. As we've reported, hundreds of fungal infections were linked to a contaminated steroid drug made by the New England Compounding Pharmacy, or NECC. Madeleine Biondolillo of the state health department says an investigation has learned how black mold spread.
MADELEINE BIONDOLILLO: Examination of NECC records indicated a failure of the facility to sterilize products for even the minimum amount of time necessary to ensure sterility.
INSKEEP: Failure to sterilize. Thousands of patients across the country have received the pharmacy's drugs in recent months and now they live in fear, as NPR's Richard Knox reports.
RICHARD KNOX, BYLINE: One of the patients who's gotten sick is Matthew Spencer. He's the mayor of Somersworth, New Hampshire, 90 minutes north of Boston.
MAYOR MATTHEW SPENCER: Hello.
SPENCER: You must be Richard.
KNOX: I am. Hi. You're Matt.
KNOX: I was wondering if you'd be able to answer the door or if you'd be hooked up to an IV.
SPENCER: Well, if you came about five minutes sooner, no.
KNOX: Spencer, a 42-year-old former Coast Guardsman, just finished a two-hour intravenous infusion of a powerful anti-fungal drug. He began to feel nauseated and headachy two weeks after he got an injection of a steroid to treat his back pain.
SPENCER: And then as the day progressed on, I noticed the headache kept getting a little bit worse, a little bit worse.
KNOX: And then he saw a TV report about the contaminated steroids.
SPENCER: And I say, well, I don't know if I had that medicine or not, but maybe I'd better go just to check out.
KNOX: Turns out, he'd gotten one of New England Compounding's steroids. And a spinal tap showed possible infection. Since then he's been on the IV medicine. A former EMT, he mixes the solution at home.
SPENCER: This is the actual medicine - Vfend, voriconazole. So what I need to do is take the caps off...
KNOX: It's a complex and exacting process that takes at least five hours a day.
SPENCER: And I need to extract a total of 53 cc's out of the three bottles here.
KNOX: But Dr. Michael O'Connell says he couldn't say whether Spencer really has a fungal infection.
DR. MICHAEL O'CONNELL: I really don't know. I just have to throw up my hands and say I don't know.
KNOX: O'Connell runs the pain clinic where Spencer got treated. He says he's pretty tired these days. Lots of patients are undergoing painful spinal taps and many are getting toxic anti-fungal drugs on the presumption that they may be infected.
O'CONNELL: It's, yeah, the perfect mess. Everybody is pretty frantic these days seeing lots of patients and being extra cautious.
KNOX: That caution is warranted. This type of fungal infection has almost never been seen before in humans. It's slow-growing. It can smolder for weeks and months before exploding into meningitis or causing massive strokes. The evidence so far is that the great majority of patients exposed to the fungus will not get sick. But nobody can be sure who will.
O'CONNELL: It creates the necessity to do diagnostic testing that in the end will be negative.
KNOX: Negative for most patients, that is.
O'CONNELL: It causes a quandary for the infectious disease doc to figure out, well, should this patient receive treatment at all? Should they receive full-boat treatment, which would be IV? Could they instead just be watched very closely with daily phone calls or visits to the office? We just don't know.
KNOX: But experts are working on ways to identify patients who may be most in danger. Some clues are coming from Tennessee, which has had more fungal infections than anywhere - 70 so far.
DR. WILLIAM SCHAFFNER: Some people may be at great risk of acquiring this infection because they got inoculated with vials that had been on the shelf for a longer period of time.
KNOX: That's Dr. William Schaffner of Vanderbilt University in Nashville. Tennessee's experience suggests the mold seems to build up in the contaminated vials over time. Experts are debating whether patients who got older vials of steroids should be treated before they get symptoms of possible meningitis.
SCHAFFNER: Should we do lumbar punctures on those kinds of people so that we can anticipate those who are going to get symptomatic later and beat the fungus to it? That is, initiate treatment much earlier, thus averting tissue damage, particularly those devastating strokes.
KNOX: But when to start treatment is only part of the problem. When to stop is also uncertain. Lately, experts have been saying people need to stay on anti-fungal treatments for six months, maybe more.
Matt Spencer, the Somersworth, New Hampshire mayor, tries not to dwell on that.
SPENCER: You could probably drive yourself nuts. Absolutely. You just go day by day, do the best you can do, do what you can do, and, you know, get rest.
KNOX: Patients like him need to be monitored very closely. If he does have the fungus, he needs to keep enough medicine in his system to kill it. But not so much that it damages his kidneys or liver.
Richard Knox, NPR News, Boston.
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