For early victim’s kin, a dearth of answers

October 27, 2012

No one seems to doubt that 78-year-old Eddie Lovelace was one of the first to die in the growing fungal meningitis outbreak that so far has killed 25 people.

News media reported that he was one of the victims almost as soon as the outbreak became public. Tennessee state health officials and staff at the hospital where Lovelace died Sept. 17 readily acknowledge to reporters that he is on a federal government list of fatalities linked to contaminated steroid injections made by a Massachusetts specialty pharmacy.

Yet his widow can’t get any officials to tell her that directly.

“On top of my grief, and my anger over the way it’s all been handled, I’ve had so much trouble finding out anything concrete,” said Joyce Lovelace, 75, a resident of Albany, Ky. “I don’t even know when I’ll have answers, or if I ever will.”

For weeks, she has been pressing authorities to provide an official cause of death for her husband of 55 years, a longtime Kentucky circuit court judge who got spinal injections last summer to relieve back pain after an auto accident. His death certificate cites the cause as “pending investigation.”

In an outbreak characterized by uncertainty, with thousands of people frightened that any headache, dizziness or sign of fever could mean that they have contracted meningitis, the families of such early victims are in a special category of ambiguity.

Many of these first-to-die were buried before federal officials began to suspect a burgeoning public health crisis in which some 14,000 people might be at risk. Instead, Eddie Lovelace and at least four others were originally thought to have succumbed to a rare type of stroke.

What convinced health officials otherwise wasn’t merely the discovery, after their deaths, that these patients had gotten suspect injections, but the location of their strokes: at the back of the head.

Other patients definitively diagnosed with fungal meningitis after getting potentially contaminated injections suffered strokes in the same region of the brain.

The stroke pattern offered sufficient evidence for investigators at the Centers for Disease Control and Prevention to count the five deaths as probable fatalities due to the outbreak.

Still, observed William Schaffner, chairman of preventive medicine at Vanderbilt University Medical Center, the Nashville hospital where Lovelace died, “While that ‘probable’ classification works superbly for public health circumstances . . . an individual family might have a different view because they might wish to know definitively what their family member died of.”

Unfortunately, he added, “We’re just stuck with that difficulty.”

The widow’s experience of having to piece together the details of her husband’s case also highlights a gap in the ambitious official response to the outbreak. Federal and state officials, in their effort to track and shut down the source of the infection and alert additional patients at risk, were focused on protecting the wider public. They proved less adept at addressing the needs of relatives of victims such as Eddie Lovelace.

His doctors never imagined his stroke could have been caused by meningitis, said daughter Karen Talbott.

Neither did Talbott, a registered nurse. Eddie Lovelace experienced a few symptoms that in retrospect appear connected to meningitis — a severe headache the night before he had the stroke, for example. But when he arrived at Vanderbilt on the morning of Sept. 12, his primary complaints were the classic results of stroke, loss of some control over one side of his face and body, for instance. Lovelace’s physician declined to comment because the family will not sign a broad release form.

According to Talbott, at first no one at the hospital was overly concerned because her father’s symptoms seemed mild and he appeared to be recovering quickly. When Lovelace took a sudden turn for the worse, the focus shifted to trying to increase blood flow to his brain in an ultimately futile effort to contain the damage.

It wasn’t until a week and a half after his burial that his family learned there might have been more to his death.

The first clue came several days after the Sept. 21 funeral. Joyce Lovelace said she received a phone call from a woman at the St. Thomas Outpatient Neurosurgery Center in Nashville, where he had received three steroid injections since mid-summer.

How was Mr. Eddie doing, the woman wanted to know. Well, Mr. Eddie has passed away, Joyce Lovelace said she replied.

Unbeknown to her, the clinic was calling at the instruction of Tennessee’s Health Department, which days earlier had learned that the injections might have been contaminated.

The woman made no mention of meningitis. Neither did a second woman who called from the clinic the following day to inquire about the circumstances of Mr. Eddie’s death in more detail.

“I just thought they were doing a courtesy call,” said Joyce Lovelace. Staff at the clinic did not reply to repeated phone calls and e-mails requesting comment for this article.

Then, on the morning of Oct. 3, Talbott’s husband called her to the television to watch a disturbing report that at least two unnamed people may have died as a result of steroid injections at the St. Thomas facility.

“I immediately thought, well my dad is one of those people [who got shots there]. And this may be what happened to him,” she said. She was unaware that her father was one of the two fatalities already being counted.

Two days later, a spokeswoman for Vanderbilt hospital told a reporter from the Tennessean that the first death in the outbreak was that of a 78-year-old man who had passed away at the hospital Sept. 17.

The reporter called Joyce Lovelace to ask whether she thought her husband might be the man being referred to.

“I’m very unhappy that I had to find out this way,” she said.

Meanwhile, she kept trying to get help with another vexing question: how to obtain a death certificate. Her attorney, Thomas Carroll, said he was told by the Tennessee Health Department that the certificate was in the hands of the Davidson County medical examiner’s office in Nashville, and “it’s on hold.”

David Reagan, the department’s chief medical officer, said he regrets that his staff was not more forthcoming with Joyce Lovelace. But he said it was an unfortunate result of the pressures of responding to a rapidly evolving health crisis. “People were working around the clock. So yeah, in normal circumstances, it would have been easier to try to think clearly about, ‘Boy, we’d really like to reach out.’ ”

It wasn’t until last week that Tennessee authorities finally issued Joyce Lovelace the version of her husband’s death certificate listing cause of death as pending investigation.

That status raises practical concerns, she said. On Friday, her application for some of her husband’s retirement benefits was rejected on the grounds that the death certificate is incomplete. And she wonders how she’ll be able to collect his life insurance policy, which included a rider offering additional benefits in case of accidental death.

But most galling, she said, is the sense that officials have been indifferent to her situation.

“It’s like a slap in the face,” she said. “It’s so inhuman to withhold this kind of information.”

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