Scenes of the Meningitis Outbreak: Patients Grapple with Uncertainty, Fear

As investigators seek to discover what led to the contamination of medications behind an outbreak of fungal meningitis and 23 deaths, those directly affected by the disease face their own questions.

Confusion, fear and anger are on display at St. Joseph Mercy Hospital in Ann Arbor, Mich., as people treated with the potentially contaminated medications deal with the uncertainty of whether they are infected, and grapple with how their course of treatment will proceed.

"I would say most of the anger is at the pharmacy, the regulation, the implicit faith they had," that the medicines they were given were safe, said Dr. Lakshmi Halasyamani, the chief medical officer at the hospital, which has treated neary 50 cases. 

But more practical considerations are at the forefront, particularly concerning the medications that infected patients need to take.

"They have a lot of questions, like 'how long will I be on these medications?'" Halasyamani said. "The honest answer is, 'We have to see,' and that's hard … it's hard to live in uncertainty for long periods of time."

The course of treatment also differs for different patients.

CDC guidelines for doctors on treating the meningitis patients have included two antifungal medications, voriconazole and liposomal amphotericin B. But the latter is unsafe for many of the patients, namely, those who are older and would suffer kidney problems if they took it.

"We have to take an evidence-based guideline and see how it can be implemented for an individual patient," Halasyamani said.

But uncertainty starts even before treatment has begun. Symptoms of the disease can take some time to appear, and patients may test negative for fungal meningitis and then develop it later.

The need for ongoing monitoring of people who don't have symptoms is part of the reason the hospital has established an outpatient clinic for fungal meningitis patients. The clinic also monitors patients with meningitis who are taking the antifungal medications, but are well enough to leave the hospital.

While helpful to patients, the clinic may also be helping the hospital, Halasyamani said. Initially, the hospital received a only few cases because the patients who were affected had received their steroid injections at a pain clinic in the community (although it is not affiliated with St. Joseph).

"Now that it's becoming more evident that we're developing some local expertise, patients are choosing to come here," Halasyamani said.

As of Monday (Oct. 22), the St. Joseph Mercy Hospital had treated 48 out of the 53 cases of fungal infections so far reported in Michigan, including 47 meningitis cases and one fungal infection in a joint. Of those, three patients have died, including one who died before the outbreak was known. [5 Meningitis Facts You Need to Know]

Michigan has had more cases than any other state except Tennessee, where the outbreak was first detected and 69 cases have been reported.

"This is really hard on patients or potential patients," said Dr. Corey Slovis, chairman of the department of emergency medicine at Vanderbilt Medical Center, in Nashville. People are caught between going to the ER for minor complaints, and worrying about signs of fungal meningitis if they're at risk.

"This is just a terrifying time for people, and we certainly feel for them," he said.

Slovis estimated that about 40 people have come to his ER to be tested for fungal meningitis. In some cases, a lumbar puncture test (also called a spinal tap) was not warranted, such as in the case of one individual who was concerned after coming into contact with someone who received an injection. (Fungal meningitis does not spread from person to person.)

Under current CDC guidelines, a lumbar puncture should only be performed on people who received an injection from a contaminated lot of medications, and are exhibiting signs of meningitis, such as nausea, headaches or dizziness. Only about half the prospective patients in his ER met those criteria and were tested, Slovis said.

"The problem patients face, if they know they've gotten a contaminated steroid injection … anything out of the ordinary makes them come see us. They're hyper-vigilant, and appropriately so," he said.

In some cases, the concern has even led people without meningitis to request antifungal drugs as a preventative measure, but the drugs have some serious side effects, which can include damage to the kidney and liver.

"Once we explain the toxicity of these medications, they realize the treatment is not appropriate," Slovis said.

A spinal tap can allow doctors to rule out meningitis in some cases, in which the spinal fluid is clear. But in uncertain cases, Slovis said, the spinal fluid sample needs to be tested further in the lab, and the patient needs to be admitted and observed in the hospital.

While an inconclusive test result may be frustrating, it is better than an early positive test. When doctors can tell right away that a patient has meningitis, it means that the disease has advanced further.

With increased awareness, the hope is that patients won't make it to that stage without treatment.

"We're hoping in the people we see that … it's early and they just have early findings of meningitis," Slovis said.

Pass it on: At the hospitals where many meningitis patients are being treated, doctors and patients are struggling with the uncertainties and fears about infections, and how best to treat them.

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