by Rose George
For three months, Goemaere forced himself to go to the clinic. “I was pushing the door, looking around, trying to speak to the different nurses.” They said, “No, no Eric don’t come here, we don’t want to get infected by those people.” Eventually he met the senior health official for the Western Cape government, one of only two provincial governments not under the control of the ruling ANC Party. Goemaere and MSF were allowed to set up a small program to treat people for HIV beyond the mother-to-child project. It was to be known as “private research” and Goemaere was given a small room in the Site B hospital from which to run his clinic. The head nurse told him no one would turn up. “She said, ‘Eric, in our culture, no one wants to be identified as HIV-positive.’ In one month, there were three hundred and fifty people queuing.” They had to build a prefab out back to house them. Some of the people in the queue were in stretchers and wheelbarrows. Some died in the waiting room.
For a while, this limited stealth project was the only possibility. AZT cost $10,000 per person per year, an impossible price for most countries. Anyway, says Goemaere, “treatment was not available in developing countries, as it was considered too sophisticated, as it still is more or less for cancer. Too expensive, too sophisticated.” Shack dwellers didn’t merit medicine and wouldn’t know how to take it. In 2001, Andrew Natsios of the US Agency for International Development told a US government committee that rural Africans would not be able to take ARVs because they “do not know what watches and clocks are. They use the sun.”25 (Later studies showed that sub-Saharan Africans were better at taking their medicine than Americans.)26 Strict patents prevented the use of generics. TAC launched a Defiance Campaign against Patient Abuse and AIDS Profiteering, and activists flew to Thailand to bring back cheap generic antiretrovirals in their luggage, their hand baggage, and their pockets. TAC launched a court case against the pharmaceutical industry’s punitive pricing of AIDS drugs, and won.27
The power of the ARVs seemed magical. “The Lazarus effect,” says Goemaere. “It was amazing. They were resurrecting.” A person who was bedridden, in what Goemaere calls “a half-coma,” who could not walk or talk, was up and walking and talking in two months. But MSF did not have enough ARVs for everybody. There were strict criteria, and this was difficult for doctors who felt they were dispensing life or death. It took until 2004 for South Africa’s government to change its policy on ARVs. Now, they are freely dispensed, though half of the seven million HIV-positive South Africans do not take them. That number worries Goemaere, still here in South Africa, still working on HIV eighteen years after he arrived at Site B and made himself first a pest and then a savior. In that gap are so many factors, and all of them, says Goemaere, make him “very nervous.”
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HIV is old. It is an ancient enemy, but for much of history it stayed safely in Old World primates. It was an insignificant simian virus. The tale has been told: that there was a man who hunted a chimpanzee, probably in the early 1920s, probably in Cameroon, and possibly he cut himself while preparing the chimp meat. Then, a virus that had infected chimpanzees for millions of years crossed over into the hunter’s blood. It was simian immunodeficiency virus, chimp version, shortened to SIV-cpz. This was not the first crossover of SIV-cpz into a human nor the first “spillover” of a zoonotic virus into humankind. SIVs have crossed into humans countless times, along with viruses from other animals and invertebrates. The crossovers happened often enough that the virus adapted to reproduce inside human cells. The extent of its adaptations is debated, but one adaptation was essential to its success. T-cells have a “restriction factor” called tetherin. This makes the surface of the cell sticky so that invaders can’t easily land on it. But when the chimp virus became a human one, it developed a protein that neutralized tetherin. When researchers gave the human virus to macaque monkeys, the protein changed again, the better to infect macaque cells. HIV is not even considered alive because it has no DNA, and many scientists loathe anthropomorphizing a virus. But it is difficult not to see intent and cunning in this ancient thing that is not living until it borrows life from us, then takes it.
SIV-cpz became HIV-1 Group M, the source of the deadliest pandemic in history. There are Groups O, N, and P, presumed to be from other crossovers, but they have never traveled outside West Africa. There is HIV-2, a distinct virus formed from an SIV found in sooty mangabey monkeys. Only HIV-1 Group M found the right circumstances in which to thrive. These circumstances were how humans and their bodies behave. Both suit HIV perfectly. We have unprotected sex, we take drugs, and we are mobile. In the eighty years that HIV spread unnoticed—a virologist uses the term percolated—colonialism pushed people from Africa to Haiti and then to North America and Europe. With colonialism, people moved more: into rubber forests as porters, between Africa and North America and Europe as businessmen, medics. HIV went with them.
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“Look at me!” says Lisa. “I’m healthy!” She does sit-ups and push-ups every day to fight her increased appetite, but she is well. She looks great. Lisa, Eric, and Rollo talk of the fact that they know there is life after HIV, that they plan to have children, that they know there are very few barriers to what they want to do. Rollo is getting married soon, then wants to train to be either an engineer or an HIV counselor. Yes, says Eric, who is studying management, I’d like to do that. These choices represent gratitude. Lisa is more adrift: she wants to study but can’t afford the fees. All of them expect to have long and normal lives. Why not? Then I ask them about friends. “I don’t have friends,” says Eric. “I’m a loner.” I don’t have friends, says Lisa. Just my boyfriend. Rollo has told his friends of his status, but no one at school. “You have to be able to trust that they will keep your secret.” Their conversation with me is less guarded than their lives. For months, Eric resisted going to the youth club, in case he met anyone he knew there. This stigma is a huge problem in HIV care and prevention.
Yet these three young people are success stories. All were put on ARVs within two weeks of their diagnosis. At diagnosis, Rollo had 300,000 copies of viral RNA per milliliter of blood. His viral load. Now, he says with a smile, “it’s 28. I’ve worked hard!” Under 50 is undetectable and—as far as we yet know—untransmissible. Eric, Lisa, and Rollo are what MSF wants to happen to anyone with HIV. But they also represent a failure. These three infections. They were not necessary. They represent what Eric Goemaere calls “a very dangerous moment.”
Jonathan Bernheimer is another pediatrician working with MSF. He is American, and seems stern, but the sternness is just a coating for passion. He works with children and adolescents with HIV, and there is much to be passionate about. Eric, Lisa, and Rollo had shown me their drugs with pride. One pill, to be taken once a day, so much better and easier to take. But not for children or adolescents. Children have to take solutions that in Bernheimer’s words “taste like crap. I mean, really terrible.” The solution version of lopinavir/ritonavir, a common ARV, “is one of the worst-tasting things you’ll ever taste in your life. It’s incredibly bitter.” A drug company did create a pellet formulation and was going to test it in South Africa, but production was abandoned. It said the manufacturing process was too flammable. Bernheimer is sympathetic: it is extremely difficult to produce a child-appropriate drug that works how you want to it work, breaking down in the liver not the duodenum, tasting palatable. Taste masking might affect the viability of the drug. “Look, I get it,” he says. “It’s not easy to make these drugs.” But that human beings going through one of the most turbulent periods of their life have the most complicated, disgusting drugs: this fact, he says, is “maddening.” He would like to see better drugs, but in five years not one drug rep has come to Khayelitsha with suggestions or queries.
So many factors conspire to push young people off their ARVs. Sometimes if they were born with HIV, they were never told they had it. Grandmothers, who used to be the caregivers of HIV orphans until ARVs began saving the mothers, would tell children they ha
d asthma. Were they preserving them from stigma? Maybe. “Way back,” says Xoliswa, a lay counselor who works in MSF’s container clinic and who is HIV-positive, “there was no treatment and stuff like that, people got pregnant, they gave birth to their children, and they died without disclosing their statuses in their families. But the children took their medication. So maybe the grandmother has told the child that they have asthma and have to take the medication every day. Now those kids are fifteen, sixteen, it’s very difficult now for the grandmothers to disclose to them. Now the questions with these kids are, what do I say to my boyfriend. For me, they start dating, they meet at school, they start sleeping [with each other]. We will have new infections in South Africa. It will never go away.”
If a teenager is a teenager, they may stop taking their drugs. “Adolescence,” says Bernheimer, “is the perfect storm for this to go badly. If they don’t necessarily feel sick, they think they are invincible so they are going to go off their medicine. We can tell them until we are blue in the face that they are going to die and that might work for a little while but oftentimes it doesn’t.” The way the virus works in younger people makes matters worse. An adult who goes off medication, says Bernheimer, will “kind of get sick, kind of get sick, get sick, get sick, and then die. Children are fine, fine, fine, fine, fine, fine, fine and adolescents fine, fine, fine, fine, fine, fine, fine, and then they fall off a cliff and they get really sick really quickly.” There is very little time to pull them back. The mortality rate for all other age groups with HIV has decreased by about 30 percent over the last ten, fifteen years, he says. “But in the same time period, the mortality rate for adolescents has increased by about fifty percent.”
Sometimes barriers to staying on medication come in the shape of fear or husbands or fists. In a report titled “Hidden in the Mealie Meal,” Human Rights Watch reported on conditions for women in Zambia who dared not disclose their status to their partners and so had strategies to hide their ARVs. Some dug holes in the ground or flowerpots. They hid them in boxes of headache pills, or in suitcases under the bed. Some buried the pills in the bag that held the family mealie meal (a maize-like staple food). Some women, wrote HRW, said they missed ARV “doses as a result of all this subterfuge.”28
Hence the adherence clinics. Stern warnings don’t work: any parent knows this. Nags to teens: like oil on water. So the clinics try to do it differently, by setting up buddy systems so a teen is encouraged by a friend to take medication. They have career days, to get teens excited about the future, to encourage them to take ARVs so they have a future. There are sports days, activities. The concept sounds nothing more complicated than any youth club on any grim council estate would offer, but it is a serious and worthwhile attempt to “de-medicalize” care with carrots that have a core of sticks. Bernheimer would like clinics to become not clinics but “centers,” so teens want to turn up, to see what’s happening, to pick up their meds, to see friends who know how to date with HIV, how to disguise foul drugs with peanut butter or ice cream, how to be healthy while infected, how to stay uninfectious. If they get better at adhering, they can pick up their meds every two months. If not, they must come every month.
Luring children with career days and snooker is one thing. But how do you lure adults to stay on their medication? The realities of life in Khayelitsha do not fit what Goemaere calls the “linear model” of 90-90-90. This is a global target that is as ambitious as global targets always are. By 2020, 90 percent of people living with HIV will know their HIV status; 90 percent of people with diagnosed HIV will be on ARVs; 90 percent of people on ARVs will have successful viral suppression.29
Life in Khayelitsha is not so neat. “If I can get you to go for a test,” says Goemaere, “and you test HIV-positive, I can get you treatment. Deal done. But life is not like that. Life is not a tunnel.” Life in Khayelitsha is competing priorities. Goemaere describes a bridge near the N2 highway. Go there in the dawn hours and it is packed with men seeking work. They are day laborers, and each day must be filled with labor. “For them, to go to the clinic, they lose one day of work. It’s a competing priority. As soon as they get better, they say, I’ll go to the clinic when I’m sick again, but for now I’ll make money because that’s what I’m supposed to be doing here.” A study in the Western Cape found that the majority of people being initiated into ARV treatment were what health professionals call “non-naive.”30 They had been on ARVs before and dropped out. MSF’s male services team is now going to shebeens, taxi stands, train stations, anywhere that men gather. It is piloting self-testing, testing after-hours, outreach testing, all sorts, all hands on deck. When “test and treat” programs were tried in KwaZulu-Natal, only half the people who tested positive went to get treatment within the next year.31 Test and run.
Blessees may be newsworthy, these girls with their sex-purchased Peruvian and Brazilian weaves. But it is the men who slip from care, from testing. They are the ones, says Xoliswa in the container clinic, who may test, who may be diagnosed, but who never disclose their status. The ones who hide, the ones who let the virus hide in them: the infectors.
I expected more hope and optimism in South Africa. I was fooled by the cheerful version of HIV, the one presented in northern Europe and America. In this version, stigma has been banished (this is untrue). Hardly anyone is infectious (mostly true). Monogamous people, men and women, can take PrEP, a magic pill that will prevent infection. Everything is under control.
In her small stall at the container clinic, Xoliswa is neither hopeful nor optimistic. “When I was infected in 2004,” she says, “I thought that by 2017 there would be no new infections. Everyone would know that there is HIV and it’s not nice to have HIV. Maybe they see us, beautiful as we are, as healthy as we are, and they think, HIV is nothing.” She shakes her head. “It’s too difficult.”
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HIV is not over. I ask Vincent Racaniello, a virologist at Columbia University, what HIV specialists will be discussing in ten years. “We would be talking about the fact that we are still stuck with it and we haven’t figured out how to prevent infection. The thing is, with HIV, it’s completely preventable, right, you just don’t use contaminated needles and you practice safe sex. And that’s it. The problem is that a lot of people don’t do that, they don’t have the means to do it, or culturally it’s not acceptable.”
HIV is not over. Sam Wilson of Glasgow’s Centre for Virus Research says, “The most remarkable thing is that when I lecture undergraduates, AIDS has passed them by and they see it as a history lesson.” There are more than thirty antiretroviral drugs available. But there are more than a quadrillion HIV genomes on the planet, in Racaniello’s estimation. How much is a quadrillion? Too many zeros to understand, so it is shortened to 1015. The math doesn’t really matter as much as this: that among that quadrillion are genomes resistant to every drug we currently have, and HIV continues to mutate.
HIV is not over. Even with successful treatment, the virus hides in the body. Its hiding places are called “latent reservoirs,” and they have been found in the gut, the brain, in cells that last for a person’s lifetime. Every so often, about once a week, silent viral DNA in an infected cell’s nucleus starts to make viruses. Then it stops until the following week, when it does it again, for no obvious reason. It is, says Racaniello, “a big mystery that we have to sort out.” Among others. Silent HIV is why antiretrovirals must be taken for life and consistently. There is no leeway. In recent years, a technique known as “kick and kill” was pioneered: drugs that kicked these quiet HIV reservoirs into producing virus, which were then killed. It worked in a two-year-old girl for two years, but her virus resurged.32 Broadly neutralizing antibodies are the other excitement. BNAbs (really) are produced by a minority of people, though no one knows why. Unlike regular antibodies, which are highly specialized, bNAbs can defeat a wide variety of pathogens. Flamethrowers, not matches. They could defeat HIV. If they could be isolated and understood and reproduced, perhaps they could
be a sort of vaccine. A monthly injection. It’s a more fruitful avenue than a live attenuated vaccine, where people are injected with a tiny dose of virus. No ethics committee would let people be infected with a virus that is only contained, not cured, and which never leaves us.
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For anyone working in Africa, the Middle East, the Philippines, with the gay black population of the United States, with older people (who make up 45 percent of the United States’ HIV-positive population), this is a fearful moment. Money is retreating like a tide. In 2016, reported the UK coalition StopAIDS, international funding fell 7 percent. That is $500 million less.33 Since 2012, funding has fallen by 5.4 percent every year.34 StopAIDS warns of reprioritization, of competing concerns such as Ebola and Zika. When the Millennium Development Goals, a set of global targets known as MDGs, was launched, HIV merited its own goal. In the Sustainable Development Goals, the updated MDGs, it is one health target among others. AIDS exceptionalism—the sense that HIV and AIDS was an unprecedentedly dangerous epidemic—was why the money poured in. It has been neutered by the medical success of treatment. For Goemaere, AIDS and HIV are no longer seen as international threats. He remembers in the early days of the Khayelitsha clinic, when it received a delegation from the Pentagon. Goemaere couldn’t understand why the military was interested, but its representatives were welcome as long as they didn’t wear uniforms. And then he understood: they saw HIV as a global risk. They came, they saw, and a year later President George W. Bush launched his greatest presidential achievement: PEPFAR, the President’s Emergency Plan for AIDS Relief. PEPFAR continues, and in 2014 it launched DREAMS, a program focused particularly on preventing HIV in young women. But Goemaere is dismayed nonetheless by what he calls “a sort of benign neglect.” When he attended the high-profile AIDS conference in Paris in 2017, he was shocked that the French president “didn’t even show up.”