Glenda Gray: The HIV warrior

Her fearless drive to stop HIV was forged in the fight against apartheid. She grew up in a family of activists. In college, she joined a group working to desegregate South Africa’s hospitals. She helped organize strikes, treated people injured in anti-government protests and documented brutalities against those detained in jail.

“Our phone was tapped. Our tires were slashed. Dead cats were thrown on the lawn,” she said. “Your life is not normal. You do dangerous things. That kind of thing becomes part of your psyche. I expected that controversy would follow me around, and everything that I would do would be provocative.”

What she hadn’t expected was that the danger would continue after apartheid ended in 1994. 

“I saw HIV explode in South Africa,” she said. “I knew a country without HIV, and then you go through the ’90s, and HIV was everywhere. Men, women and children were dying.”

The new battle was on two fronts. After Nelson Mandela left the presidency in 1998 and was replaced by Thabo Mbeki, Gray found herself fighting not only a deadly virus but a government that refused to acknowledge that HIV causes AIDS and did all it could to thwart her efforts to find treatments —a government she had worked to put in place. 

The hero

The fifth of six children, Gray grew up in Boksburg, a mining town on a gold-bearing ridge that runs east to west through Johannesburg. Her family lived on the hard side of town, in a neighborhood that was as poor as it was conservative. Her father was a mechanical engineer who worked in the mines. Her mother was a bookkeeper.

Money was scarce, so in that regard her family fit in. But culturally and politically, they stood out. In a town where many kids didn’t do well in school, Gray and her siblings brought home prizes in academics. They listened to Bob Dylan albums. But what set her family apart the most was having friends and visitors who were black.

“I grew up intensely aware of what it’s like to live among poor people and hard-working people,” Gray said. “At the same time, we were this strange family with this different way of thinking, knowing that apartheid was wrong.” 

She knew from the age of 6 that she would be a doctor, a goal that might have been considered laughable in her working-class neighborhood except for the “crazy family” she came from. Her father had been the first in his own family to go to college and taught his children — “my great people,” he called them — that education was the way to better themselves. Five of the six went to university; Gray and two others continued on for higher degrees and have pursued academic careers.

Gray claims not to know where her impulse to become a doctor came from, but consider this: Whenever a landslide or accident occurred in the mines, her father was the one who scrambled through small openings and down narrow tunnels to rescue miners who’d been trapped underground for days, waiting to die. His small stature allowed him to do the job, but what looms large in Gray’s memory is his fearless drive to save lives.

“Every girl needs a father who’s a hero in some way or other,” she said.

Her father did not live to see his fearlessness replicated; Gray was 16 when he died. Today, whenever the six siblings gather, they still say to each other, “The great people are coming.”

The activist

Gray entered the University of the Witwatersrand in Johannesburg in 1980 for six years of medical studies, to be followed by seven years of training toward a specialization in pediatrics. Her older siblings were already there, steeped in studies and protests. A brother belonged to a radical student union, one of the few predominately white organizations working to end apartheid. Members were frequently arrested; one died in prison in what police claimed was a suicide.

Fearlessness was a useful trait for the times.

Gray became one of two white medical students to join the Health Workers Association, the group organizing  workers — from clerks and stretcher porters to doctors and nurses — to desegregate South Africa’s hospitals. In addition to her anti-apartheid work, she took up another cause. By the mid-1980s, the first AIDS cases had been confirmed elsewhere in Africa, and she knew it was a matter of time before the virus reached the south. She took charge of educating communities on how to prevent HIV.

“I became interested in HIV as an HIV activist,” she said.

Like so many doctors of her generation, she remembers her first patient to die of AIDS. He was about 24 years old and had severe pneumocystis pneumonia, a fungal infection that can be fatal in people with HIV because of their weakened immune systems. Still in training, Gray was doing a stint in a hospital intensive care unit and had to intubate him — place a tube in his trachea to ease his breathing.

“He took my hand and he said, ‘Don’t let me die,’” she said, recalling that moment with clarity more than two decades later. “And I said, ‘I won’t let you die.’ And he died. It was horrible because you started to see that you couldn’t help people.”

The researcher

Children started to die too.

At first, a baby with HIV was such a rarity that doctors would gather to take a look. By the time Gray completed her training to be a pediatrician in 1993, the numbers were growing. Soon every third child at Chris Hani Baragwanath Hospital, or Bara, an enormous hospital in the black township of Soweto where she would spend much of her career, was HIV-positive, and HIV was the most common cause of death in children admitted.

Gray had planned to be a doctor, not a researcher. But the crisis propelled her to be both. She began looking for affordable ways to prevent mother-to-child HIV transmission.

She founded a perinatal HIV clinic with a partner, Dr. James McIntyre, at Bara in 1993. It was one of the first in South Africa to offer HIV testing and counseling for pregnant women and to do outreach to the surrounding community. In 1996 the clinic because a research unit of Wits University called the Perinatal HIV Research Unit.

That was the same year Gray presented her first research paper to an international AIDS meeting and walked straight into a tempest. The subject was whether HIV-positive women in developing countries could safely feed their infants formula to avoid transmitting the virus through breast milk. At the time, global health leaders recommended that in developed countries women use formula but not in developing countries, arguing that the risk of dying from diarrheal diseases caused by mixing powdered formula with contaminated water outweighed that of contracting HIV.

Gray felt that the recommendation left women in poorer countries “between a rock and a hard place.” She wanted instead to give them information, let them choose whether to breast- or bottle-feed and then support their choice. So she did, and found that women in Soweto were able to use formula safely and reduce HIV transmission rates.

Reaction to Gray’s paper from activists who had led boycotts against Nestle and other formula makers in the 1970s was swift and harsh.

“People in the audience started asking whether I was on the payroll of Nestle,” Gray said.

Everything about that presentation was quintessential Gray. The drive to save lives. The willingness to buck convention.  And the insistence on asking the community — her patients — what they wanted.

“She puts the community in her heart,” said Thoko Sifunda, a Soweto resident who serves on a community advisory board for Gray’s research clinic and as community global co-chair for the HVTN. “She makes sure that the community is represented.”

Not long after her presentation on breast-feeding versus formula, Gray was stirring up controversy again. Researchers had already found a drug — AZT — that would prevent mother-to-child transmission during childbirth. But women in developing countries could not afford the 14-week course of treatment, and many did not learn that they even had HIV until they were close to delivery. So Gray’s research unit joined a clinical trial to find the most cost-effective treatment at the lowest dose, reasoning that an unaffordable drug might as well not exist.

This time, criticism came from an editorial in The New England Journal of Medicine, which took issue with the study’s decision to test the regimens against a placebo; in a drug trial, it is generally considered ethical to test a new drug or regimen against the best available treatment when a treatment exists. Once again, Gray went to the community and asked what they wanted. They agreed to support a placebo arm. The trials established beyond a doubt that a shorter, cheaper regimen worked.

The next problem was getting it to South Africans.

The warrior

HIV had begun to show up in South Africa around 1990, as apartheid was crumbling. That was the year Nelson Mandela was released from prison. Four years of negotiations paved the way for national elections ending white rule and ushering in Mandela’s rainbow nation. The slow-acting virus, which can take 10 years to cause serious illness, competed for attention with efforts to transform South Africa into a democracy. During the political transition, Gray and McIntyre advised the African National Congress on HIV and helped draft a national AIDS plan. All that was disbanded after Mandela, who having said he would serve only one term, stepped down and was succeeded by Thabo Mbeki as president.

By then, as AIDS cases were exploding across South Africa, Mbeki began courting denialists who said that poverty, not HIV, caused AIDS and that antiretroviral drugs were toxic and would not be allowed in public hospitals. Gray recalled getting into a “screaming fight” with the new minister of health — a former comrade in protesting apartheid — who advocated beet roots and garlic for curing AIDS.

“You can imagine how terrible it was,” she said. “Apartheid ends. You’re on the good side of the government. You’re helping with the national AIDS plan and you’re giving advice about HIV, and then suddenly the political landscape changes. You find yourself fighting with the very people that you worked with before only to find that they tell you that beets and garlic will treat HIV.”

Just when Gray’s research had found an affordable treatment to prevent mother-to-child transmission, the government refused to provide the drugs in hospitals. Undeterred, Gray got colleagues in the United States to ship drugs to her. Once a doctor at another South African hospital called to say a woman in labor needed the treatment; Gray sent a driver over with the drugs, only to have the hospital superintendent intervene and send the driver away.

“The superintendent called and said, ‘How dare you send that medicine,’ and stopped the woman from getting the drug,” she said. “We are fighting with superintendents of hospitals. We were fighting with the government.”

Her friends warned her that she was likely under surveillance by the national intelligence agency and counseled her to vary her route home and change her home phone number. But if she felt threatened by her government, she always felt safe in Soweto, the community she had worked so hard to engage and serve.

“Never in Soweto did I ever feel in danger,” she said. “We felt like we were warriors. Women had to get AZT to stop the epidemic in children. This was the only thing that we should do or could do.”