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Libyan parents hope for long-sought answers in HIV mystery

COLUMN ONE

More than 400 children were infected with the AIDS virus at a children's hospital in the 1990s. Moammar Kadafi called it a deliberate act by foreign workers, but some now openly question his role.

May 24, 2011|By Patrick J. McDonnell, Los Angeles Times

To date, parents and doctors say, at least eight children have been born of such marriages, all HIV-free thanks to scrupulous measures taken during pregnancy. But 19 mothers of children infected at the Benghazi hospital contracted the virus through breast-feeding, doctors say.

The trauma of the incident extended well beyond HIV's insidious physical effects.

Families whose cases became known were shunned. Children faced taunts and suspicion and were forced to change schools. A few fathers abandoned their wives, or took second spouses. Those affected mostly kept the matter secret from neighbors, relatives and even the children themselves, at least until they became adults. Some families left Libya.

"HIV still has a very strong stigma here," said Dr. Ali Alsalhin Bengleil, a pediatrician at a state-run clinic built for the families, where medications are running low as a result of the Libyan conflict.

One of those infected was an orphaned infant who, given her condition, was unlikely to find a proper home. Omran's family adopted her. Thuha is now a lively 13-year-old who was prancing around the family home the other evening in scarlet Mickey Mouse pajamas.

"She needs to put on weight," Omran said with concern as the slim girl flashed a beguiling smile at visitors.

When word of the HIV infections began emerging in 1998, parents say, the government went into cover-up mode. Kadafi didn't want a scandal undermining his well-crafted image of the oil-rich nation as a socialist paradise. Several husbands recalled being told, "Have your wife checked," implying that their spouses were the source of infection.

But, in a bold instance of standing up to authoritarian might, the parents staged protests at the hospital, pushing for an investigation and compensation, filtering the story to the domestic and international news media. Although most families wanted to remain anonymous, some went public with their stories and pleas for aid. Eventually, Kadafi agreed to help the families, although the regime suppressed any criticism of the state hospital, blaming everything on the foreigners.

The government paid to send the families to Italy and elsewhere in Europe for testing and treatment. Public funds underwrote the HIV clinic in Benghazi and the costly regimens of drugs from the West. Some say now it was all an attempt to buy silence. As part of the deal to free the foreign workers, a European fund was established that provided each family about $1 million.

Today at Al Fateh Children's Hospital, there is no indication that the complex of beige, three-story buildings was ground zero in a dark episode. Though parents were initially scared off from using the facility, patients have long since returned to Al Fateh ("the Liberator," one of Kadafi's many self-bestowed titles) and the hospital appears clean and orderly.

Even now, the staff declines to discuss the case. Kadafi could come back, several noted with pointed stares. They did insist that no procedures had been changed, no new safeguards put in place, and that no physical evidence of the infection was ever found at the hospital. So how did the children get infected? A mystery, they said.

"When I first learned what had happened, I felt, 'How unfair that someone would do this to me and the others,' " Lubna Werfally, 19, said on a recent morning as she and her father visited the HIV clinic, across town from the hospital. "But really, now it's not something I think about that much."

Werfally is a striking, studious young lady who wants to be a surgeon. She wears a veil, like nearly all women here, but also sports stylish jeans, pointy black boots and rhinestone-studded sunglasses. She was 6 when she was infected after being admitted for asthma.

"I want to live a normal life," she said. "I'm studying hard at the university. I try to accept what happened as something I must deal with, like any other illness."

But Werfally, like some of the others, is also suffering from hepatitis C, a liver disease that is especially perilous for those with HIV. Her family suspects the hepatitis came from a blood transfusion she received in Italy during HIV-related surgery on one of her lungs.

"Right now, our big worry is the hepatitis C," said her father, Mohammed Houssain Werfally, a former fighter pilot who, like his daughter, said he doesn't focus on the murky origins of the Benghazi infections. ("That's the past," he said.)

He wants his daughter, the eldest of his six children, to be able to do as she pleases with her life, he said. It's an unusually progressive attitude in Libyan society.

"If Lubna wants to get married, that's up to her," he said. "If she marries someone with HIV or not, that's her decision. Right now she has her studies. That is her life."

The family is in touch with specialists in Europe, said the father, who expressed confidence that new drugs would emerge to suppress and even eliminate the virus.

"I cannot leave this earth without knowing that Lubna is cured," he said. "I want Lubna to have her life."

patrick.mcdonnell@latimes.com

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