Libyan parents hope for long-sought answers in HIV mystery

The families have become close, sharing confidences and grief as their children, some now young adults, come to terms with a poisoned future — a lifetime of medications, anxiety and enduring stigma in a traditional Muslim society where their conditions remain cloaked in shame.

Some survivors have married other victims, with parental encouragement. No need to involve outsiders.

They gather regularly to socialize at a drab community center where a poster on the door bears color snapshots of children's inquisitive faces, looking like a preschool lineup. It is a roster of the dead.

Even as anger and denial have yielded to reluctant acceptance, many still yearn to know: What really happened to our children? Who was responsible?

These are the families of more than 400 youngsters, from infants to teenagers, who were infected in the late 1990s with HIV, the AIDS virus, at Benghazi's public pediatric hospital. At last count, 62 had died.

The children ranged in age from a few months to 14 years when they were infected during 1997 and '98. Most did not receive blood transfusions, according to doctors and families, but were injected with medications or intravenous fluids, usually for bronchial ailments and other non-life-threatening conditions.

In a case permeated by a dictator's intrigues and international outrage, Libyan prosecutors alleged that five Bulgarian nurses and a Palestinian doctor deliberately infected the children as part of a nefarious conspiracy that turned caregivers into child-killers. European experts who studied the evidence cited less sinister reasons as the likely cause: poor hygiene and the reuse of syringes.

The six medical workers were convicted and sentenced to death by firing squad after what the West widely regarded as show trials. But a deal was ultimately struck with the European Union and the six were extradited to Bulgaria in 2007 and freed.

The disturbing episode in a country where HIV infection was virtually unknown remains one of the period's great medical mysteries, and a collective affront in this eastern Libyan city where mistrust of Moammar Kadafi has always been high.

Today, with Kadafi's regime ousted from the east, at least for now, there is hope that some kind of truth may finally emerge, even as freedom from Kadafi has brought a new peril: a shortage of crucial medications because of interrupted shipments from Europe.

"My son has the right to know what happened to him," said Mohammed Gadir, a former student in Riverside whose boy, Wanis, now 14, was among those infected. "I see Wanis taking his medications, struggling to be healthy, and I think: 'This would be easier to accept if it were something that happened naturally. An illness. God's will. But someone did this to my son.' "

Parents now voice a long-repressed belief that Kadafi's regime manipulated the tragedy, perhaps to cover up for negligence at the hospital or in anger over the conviction of a former Libyan intelligence operative in the 1988 bombing of Pan Am Flight 103 over Lockerbie, Scotland. Kadafi publicly linked the Lockerbie case and the Benghazi prosecutions, insisting that Libyan justice would handle the foreign medics just as Scotland treated the bombing suspects.

"From the beginning, everyone suspected that Kadafi had something to do with this," said Saad Ali, 45, whose son was infected. "But until now, we were afraid to say it."

Others, however, have never wavered in their belief that the medical workers were the culprits.

"I'm convinced they did it," said Saleh Omran, 43, who still spends time on his laptop looking for clues to his daughter's infection, poring over the voluminous record of witness statements, investigative reports and other documents.

The foreigners' purported motives were many: hatred of the Libyan people, profit-driven experimentation in search of an AIDS vaccine, collaboration in a diabolical plot hatched by the Mossad and the CIA, as Kadafi once postulated. Upon their release, the workers said they had been tortured into making "confessions" about concealed vials of tainted plasma, clandestine injections, secret payments and alcohol-fueled sex romps.

"I don't know who was behind it," Omran said, "but someone wanted to make money from our children's suffering."

Many of the parents became friends over the years, linked by a singular bond of hardship. They met socially and provided the children —almost evenly split between boys and girls — a chance to get to know one another in comfortable settings.

Omran's daughter, Fatma, now 22, is among those who have married other infected survivors, a move welcomed in a society where matrimony largely remains a decision reached by families, not individuals.

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

Copyright © 2019, Los Angeles Times
EDITION: California | U.S. & World
71°