In meningitis outbreak, fear lingers for patients with few answers

A national outbreak of fungal meningitis linked to a tainted steroid killed two Marylanders. Nearly two dozen people living with the disease and hundreds of others who may have been exposed fear they may be next.

Sheila Smelkinson began suffering in July from pain in her lower back and right leg that kept the Pikesville resident awake for all but a few hours each night. Cortisone shots, one in August and a second in September, relieved her discomfort — until she received a call informing her the medication was among batches contaminated with fungus in a Massachusetts pharmaceutical facility.

"I'm almost sure she said 'deadly' to me," the 72-year-old Smelkinson said of the woman who called from Greenspring Surgery Center, where she received the shots. "My husband and I were just looking at each other wondering, 'What can we do?'"

There is no answer, other than to wait. Given the unusual circumstances of the outbreak, doctors can make only educated guesses about remaining health risks to patients like Smelkinson, who has not tested positive for meningitis nor demonstrated any symptoms. For those who came down with the infection that inflames membranes surrounding the spinal cord and brain, treatment options are lengthy and unproven, and in at least one case, inadvisable because of the patient's old age.

About 1,500 people in Maryland are thought to have received injections of the tainted medication, but only 25 cases of fungal meningitis have been confirmed in the state since the outbreak was discovered in mid-September. For nearly all 1,500, questions about the health risk remain unanswered. Meanwhile, lawyers are plotting strategies to compensate the victims for their illness and mental anguish, but, given the scope of the outbreak, it will be a long process.

"Is this ever going to get better?" asked Harriet Friedman, whose 88-year-old mother, Pikesville resident Rose Krol, has been bedridden with fungal meningitis for two months. "Is it going to go away? Is it going to remain in her body? No one is telling us."

Health officials have gradually increased estimates of the disease's incubation period, from a matter of a few weeks early in the outbreak to, more recently, three months or more. One patient told lawyers at Pikesville-based Janet, Jenner & Suggs LLC, a firm representing Smelkinson and about two dozen others, that doctors advised undergoing a spinal tap each month for a year.

While epidemiologists have said the outbreak appears to be slowing, they have not ruled out the possibility of more deaths occurring in Maryland or elsewhere. The Centers for Disease Control's data suggest that the greatest risk for developing fungal meningitis is within the first six weeks after an injection, with the chances falling to 1 percent after that point.

Still, with new meningitis cases and deaths being reported, the incubation period can't be determined yet, said Dr. Lucy Wilson, chief of surveillance, infection prevention and outbreak response for the Maryland Department of Health and Mental Hygiene. The latest new cases in Maryland were reported by the CDC on Dec. 10.

"The recommendation is to continue to have vigilance," Wilson said. "It's an unusual fungus to be seen causing human disease, and it's difficult to treat."

More than 650 fungal infections related to the tainted drugs have been reported across 19 states, including 372 cases of meningitis. Nationwide, 39 have died.

The range of circumstances for those exposed is wide. Some, like Smelkinson, have seen no meningitis-related symptoms, though that does little to allay fears sparked by the phone call she received from the woman at the surgery center.

"I ended the conversation with her and I told my husband, 'I'm going to die,'" she said. "That is exactly the way I felt."

Others have had health complications in addition to the mental anguish.

Yvette Lomax of Great Mills in St. Mary's County had received spinal injections after a car accident, and went back for more injections in her neck before learning the initial injections were among the tainted lots. Since then, the 47-year-old has had little guidance because she has no health insurance to cover doctor's visits.

She visited an emergency room for testing but said she never received the results. On top of headaches and congestion, she has developed skin breakouts and incontinence that she fears could be related, though they aren't among the common symptoms for meningitis.

Pikesville resident Gerald Cohen spoke out at a Capitol Hill press conference on tighter pharmaceutical regulation in November, describing irritability and constant exhaustion since suffering a stroke. He was an active 71-year-old before receiving a dose of the tainted steroids to treat back pain, coming down with nausea, neck stiffness and fever soon after. But he has not tested positive for meningitis.

"It's not fair for anyone to be in a situation like this and you feel like you're out there by yourself to figure it out," Lomax said.

Lawyers are gathering cases for all types of victims in the outbreak. More than 200 cases have been filed in federal court, though none of them in Maryland. Robert K. Jenner, an attorney with the Pikesville firm representing Smelkinson as well as Cohen, Lomax and Krol, has been involved in some legal maneuvering on behalf of clients outside Maryland, but has not filed any action for local clients.

G. Randolph Rice Jr., a Dundalk lawyer representing about a dozen local patients with outbreak-related concerns, said he expects complaints to be consolidated in federal court, though it could take years. Lawyers watched intently as the New England Compounding Center, from which the three tainted lots of medication were distributed, filed for Chapter 11 bankruptcy-law protection Dec. 21 and said it would establish a fund to compensate victims, Rice said.

Still, some victims he has spoken with said they aren't ready to get in line for payouts yet.

"I've found a lot of clients who said, 'I'm not going to worry about it right now while I get healthy,'" Rice said.

For some, recovery may not be an option.

Krol, like most of the victims, was looking for relief from back pain when she received a steroid shot in mid-August. The 88-year-old Pikesville resident had gotten a spinal injection for back pain three years earlier, with success, said Friedman, her daughter. But by mid-September, Krol was crying out from pain in her neck and head and vomited anything she ingested, even water, Friedman said.

A meningitis test came back positive, but because of Krol's age, doctors would not treat her with the usual course of antifungal medications, Friedman said. The treatments are known to produce intense side effects, including hallucinations and kidney dysfunction, though there is no age limit for treatment, Wilson said.

Instead, they give Krol painkillers to attempt to keep her comfortable. But the medication saps Krol's mouth of saliva and dries her eyes, limits her balance and fogs her mind, Friedman said.

This summer, Krol would venture outside on her walker or play cards with visiting friends, but now she struggles to sit at the kitchen table for more than a few minutes when her children and grandchildren visit, Friedman said. Doctors have told the family the pain will eventually wear out Krol's body.

"You only get one mom. To see her suffer, and you can't help her? I'm helpless," Friedman said. "My mother prays to die every day. She's had enough."

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