by Rose George
HIV is shifty. The immune system has plenty of ways to defeat pathogens. It can eat them or tag them with antibodies that will recognize them when they return. It can stick them to the surfaces of cells so that they cannot replicate or bud. But for all this to work, immune cells have to recognize the enemy. In one out of two replications, HIV makes random errors. It produces a particle with slightly different proteins or a slightly different genome and becomes unrecognizable. Eventually, in about two weeks, the immune system will learn to recognize the new versions. But by then the virus will have changed again. It’s not that our immune system doesn’t work. It works too late.
HIV is both quick and slow. Once HIV has reached a lymph node, it is, says a virologist, “game over.” In a lymph node, it will find a surfeit of T-cells. For the first couple of weeks of a successful infection—a stage known as primary or acute infection—billions of new virions are released into the bloodstream every day. Viral activity is intense and the viral load climbs rapidly. The infected person notices none of it. After one to two weeks, the body begins to produce antibodies to deal with the virus. This is called seroconversion, and it produces a seroconversion response that often feels like flu. Fever, aching joints, diarrhea, or malaria-like symptoms are common and can last several weeks or months. The virus plateaus and the T-cell count recovers. But HIV is known as a “lentivirus” because it takes its time. It is only in abeyance. After those first symptoms, there will be hardly any for years. A person feels uninfected and unaffected but their viral load—the number of virions in their body—is high enough to be infectious. The biggest driver for viral evolution is to find a new host and the best hunters are the stealthy ones.
* * *
My MSF contact sends me a text. I had asked to meet some HIV-positive young people, but it has proved difficult to get access to a youth club at Site C clinic run by local authorities with MSF support. So she has arranged for some club members to visit me at MSF instead. She texts,
“They’ve asked about incentives.”
I text back my indignation.
“What? I don’t pay for interviews. I never pay for interviews.”
Another text arrives.
“I think they mean biscuits.”
I arrive laden with Cokes, muffins, fruit chutney–flavored popcorn, crisps, smiley-faced biscuits. The smiley faces are because I didn’t know how old the youth were going to be, only that they were HIV-positive, and that they were doing me a big favor by coming to the MSF offices to meet a random writer who would ask about the intimacies of their status, lives, and feelings in return for junk food. All three attend a youth club for HIV-positive young people that is meant to give them hope. The club meets only once a month but it is a way for them to be together. Nothing heavy: they play pool, they have fun, they swap tips on how to engage with new partners when you’re coming into a relationship bringing HIV with you. It sounds like every youth club ever, but it is part of MSF’s groundbreaking adherence programs. The factors fueling HIV in South Africa are complex and many, but one of the most worrying is treatment fatigue. Even people who come to the clinic and get ARVs may not keep taking them. Adults are getting tired of taking drugs, especially when they feel well. Children who grew up with HIV who become adolescents do what teenagers do: they rebel. They stop taking their drugs. It is horribly easy, as MSF pediatrician Ann Moore explains to me later, to create resistance. To protect against resistance, anyone on ARVs must take them 95 percent of the time. I ask her to translate this into doses. Does that mean missing a few doses? No, she says. It means you can risk missing only one a month. This is chilling. Who has never cut short a course of antibiotics or skipped some tablets? Missing one dose a week is a reduction of 12 percent, so a definite danger zone. She tries to explain how this works biologically—it has to do with how the virus mutates—but if I find it taxing, I wonder how they convey that to a teenager. Probably this is why the message to the newly HIV-positive can perhaps seem blunt: take your ARVs, every day, always and forever.
The first two young people to arrive are a stylish young man with a buzz-cut Afro and a young woman in a tight leather jacket and gold jewelry. Neither wants to use a real name, so they choose new ones on the spot. Lisa, says the young woman. Eric, says her friend. She is twenty-five, he is twenty-three. She is originally from the eastern Cape, on the far side of the country and continent, facing a different ocean. But her family moved to Khayelitsha and she had no say in it. Eric was born near the Waterfront, a ritzy shopping district in Cape Town, but lives in Site C. He also has family in the eastern Cape and visits them now and again for family occasions such as a ritual circumcision.
They look at the food but don’t touch it. Eric has just learned that people who are on ARVs are at a higher risk of diabetes. I begin to apologize. I should have brought fresh fruit, not these crap carbohydrates. But Eric laughs and opens his jacket. Look, he says, pulling a small packet out of his shirt pocket: “I always have Smarties with me.” For some reason ARVs make them want spicy food, chocolate, all the bad good things. And they want them all the time. An MSF doctor tries to explain this to me: it’s about calories not working as they should and about what antiretrovirals do to the metabolism. What Eric and Lisa know is that ARVs make you really, really hungry.
Both found out they were positive in 2015. I ask them how they were infected, but their answers are foggy. “I don’t know,” says Lisa, “because I found out that several people in my family had HIV and never told us. They died. So maybe you know, if someone in the family has a cut, and you rush to help, and…” Eric doesn’t offer a theory of how he got infected, so I conclude it was sex without condomization. They were both profoundly shocked. You have to be, says Eric, who got home after his diagnosis and sat on his bed, stunned. “I was thinking, how did I get this disease? I questioned myself, and what did I do wrong, is God somehow trying to punish me?” He found himself listening to “Hello” by Adele, a song he had downloaded only the day before. He sings the chorus. “Hello, from the other side.” “I remember thinking, why am I playing this song? It’s not like I’m dying or anything, there are a lot of people that are HIV-positive and living their lives. I knew that.”
Of course there was shock. Even if you know you are at risk, there will be shock. And most people are very bad at admitting they are at risk. An MSF counselor tells me that she used to ask her clients to assess their own risk of getting HIV. Each one said “low,” a statistical improbability. “So I would say, do you use condoms? And they would say yes. I would say, ‘all the time?’ and they would say ‘no.’”
Lisa says that HIV has made her stronger. Eric says HIV was a blessing in disguise. They often use the phrase “life after HIV,” and I hear the echo of counselors in the phrases, of efforts to induce positive thinking. The drugs were difficult at first: there was nausea and fatigue. When Eric took his first dose of medication, he remembers lying in bed and the bed was rotating. They both laugh. Free hallucinogenics. Since then, they have had no trouble with their fixed dose combination: it is one pill taken at roughly the same time every day. This is a massive advance in treatment to anyone with HIV who remembers taking eight pills at all times of day, but at the same time, and some with food and some without, and some with awful side effects. Dosing was much stricter. People tried to find ways to remember, associating their pills with a favorite soap opera. Now the drugs are more robust so there is more leeway: if they are meant to take it at nine and they forget until twelve, that’s fine.
It’s a small pill, easy to swallow. No big deal. It’s just life with HIV. But despite the confidence and clarity of Eric and Lisa, they hide their status from most people in their lives and definitely from strangers. Lisa has told only her boyfriend and her sister, who is also HIV-positive. Eric told his cousin, but only after she came to him to tell him she too was positive. They hide their ARVs from friends and family. If they are away from their homes and need to take the pill, they scrunch it in a tissue and take it i
n the bathroom, like contraband.
After a while, a third young man joins us. He wants to give his real name, but it’s distinctive, so I’ll call him Rollo. He is eighteen and the newest infected: he found out only the year before. Yet he is the most open about his status. “I’ve told my whole family, my friends. Everyone.” The first person he told was his mother, who then revealed that she was HIV-positive and had been for years. “She didn’t tell us because she thought we were too young.” His mother, healthy and strong, was the best way for him to learn something that public health people struggle to convey: you can be healthy with HIV, despite the huge appetite. Rollo’s brother works for MSF in the male services sector. I don’t know his status and I don’t ask, but when he goes and does outreach, trying to get men to test, he tells them he is HIV-positive. It’s what activists used to do in the bad days. It is to shock them. You have it? A healthy man like you? In the entrance hall of the Khayelitsha office is a photograph of Nelson Mandela wearing a white T-shirt. In black letters, it reads HIV-POSITIVE. It had the same effect. You have it? Madiba? You?
* * *
HIV is hard to get. You will not hear this in public health messaging. Rates of transmission depend on many factors from geographical location to your preferred sexual position to how much viral load the infectious person has. Judging risk is a complicated science, so numbers vary widely. The chances a woman may pass HIV to a male sexual partner, for example, are 1 in 700 to 3,000 exposures. From a man to a woman, the risk is 1 in 200 to 2,000 exposures. Needle sharing is 1 in 150. This may sound generous, that you can have sex 2,000 times in safety. Many of the 2,000 times, you may be invaded by HIV but not infected. It is, says Sam Wilson of the University of Glasgow’s Centre for Virus Research, “extremely counterintuitive to think of such a successful pathogen being transmitted so inefficiently.”20 But these big numbers can lull and trick: 1 in 2,000 exposures can mean you are infected on the first exposure or sexual encounter. It takes only one virion.
HIV is fragile compared to other viruses. It can be destroyed with heat or bleach, though it can survive outside the body in dried blood or air. (Its survival chances depend on temperature, the medium, how much virus is in the medium, and other factors.) HIV will not be transmitted by a doorknob or toilet seat or handshake or tears or a kiss. If you swallow HIV, the chances of infection are remote unless you have an ulcer or tear that lets it into the blood. HIV’s strength is not form but function. It adapts. It travels in sexual fluids, blood, and breast milk because they will get it where it needs to be. It is fragile outside the body because it has no need to be otherwise. It has found a lifestyle and no need to change.
Blood is a sure medium for HIV: a needle puncture or a wound or a cut is a fast way into the bloodstream, where HIV can infect the blood cells or in which it can travel in freely to find others elsewhere. Mucous membranes are another good route. These line the anus, vagina, urethra, and the foreskin and are packed with white blood cells, stationed there to guard against infections that can arrive through the body’s openings. The cells are good hunting for virions that target them. HIV can slip through membrane cells to the blood. (Cells in the anal membrane are wider spaced than in the vaginal one, which is why anal sex is riskier.) The best way to get to the membranes is to travel in a fluid that encounters them: semen, pre-semen, vaginal and anal fluids. The best way for HIV to infect humans is for humans to carry on having unprotected sex and sharing needles, which they do.
* * *
“They were melting. Literally melting.” Eric Goemaere is recalling the early AIDS days. He is the HIV referent, or expert, for MSF, and a genial man, his accent that of a Francophone who has spent decades in English-speaking environments but who retains the audible charm of French. I’m a little awed by meeting him because I know his history. I’m also a little awed by the MSF office in Cape Town, with its statement rattan hanging chairs looking out over the city and the port. “I know,” says the MSF press officer. “It’s a bit Google.” It is an unexpected sight in the context of an organization that is known for its ferocious efficacy and fierce neutrality. Tenacity and glamorous humanitarian doctors in the most difficult working environments such as war zones and disaster, still there when everyone else has left: this is MSF. Despite the chairs, this Cape Town office—the rest of it suitably plain—is still confronting disaster, just one that has better transport links.
“MSF,” reads one pamphlet, “does not take political sides or intervene according to the demands of governments or warring parties.” On the next page the heading is Témoignage. Bearing witness. Where MSF teams “witness gross injustice, violations of basic rights to access care or breaches of humanitarian principles, MSF considers it has a responsibility to raise these concerns in the most appropriate way by addressing governments, the United Nations, other international bodies, the general public and the media.” If that’s the case, then Eric Goemaere has been one of the best witnesses—one who is vocal—in MSF history.
In the 1990s, when he was working in Chad and other African countries, he remembers people arriving in clinics horrifically sick. Their skin had strange black spots. They were so very thin, yet they had neither diarrhea nor TB. Their life was leaching from them. Then HIV was discovered, and people could be tested, and the numbers were stunning. The virus had made a plague. Yet MSF, this notoriously intrepid and brave association of adventurous doctors without borders, stayed away from HIV. “In the 90s,” wrote its chief executive Bernard Pécoul, “we just rejected the possibility of doing anything.”21 Perhaps this was understandable. Doctors treat with medicine and they had none to treat with. Ann Moore, the pediatrician, dates her time at MSF by saying she arrived “before we had any treatment.” Her daughter was training as a doctor in Durban at the time and nearly gave up medicine. “She said to me, Mum, on a medical ward at night I’ll sign four death certificates for women my age and I can’t take it. I mean, [it was] just terrible.”
Without any available drugs, MSF would only do prevention. The position was not popular. Many staff were frustrated the organization would not try to do more. In 1995, MSF’s newsletter ran a headline describing itself with scorn as a WHITE, HETEROSEXUAL SERONEGATIVE ORGANIZATION.”22 The same year, Goemaere arrived in Johannesburg hoping to set up a clinic in a township in Alexandra. By then, South Africa had the highest prevalence of HIV in the world and he assumed that its government would be desperate to find a solution and a treatment. He expected open arms and he got a fist instead. Because this was the time of Comrade Undertaker and Doctor Beetroot. Comrade Undertaker was President Thabo Mbeki. “Comrade” because of his stern demeanor and the Communist leanings of the African National Congress (ANC), the governing party of South Africa, and “Undertaker” because Harvard academics have calculated that Mbeki’s refusal to believe that HIV caused AIDS and to provide antiretrovirals has led to the deaths of at least three hundred thousand South Africans. Doctor Beetroot was Dr. Manto Tshabalala-Msimang, Mbeki’s health minister, a woman who told South Africans dying in their hundreds of thousands—including the president’s spokesperson—that antiretrovirals were toxic and that they would do better to treat HIV with diet. At the huge AIDS conference in Durban in 2000, the government stall displayed beetroot, garlic, and African potatoes because this is what Tshabalala-Msimang proposed to treat HIV.
It was a shock. Mbeki as vice president had shown no signs that he believed HIV was not related to AIDS, or that ARVs were toxic, or that AIDS was nothing more than a disease of poverty. In 1999 he became president, and—so the tale goes—was on the Internet late one night and found a quack denialist site and made it truth. The government began to support the use of multivitamins and potions to treat HIV.
Even now, it is baffling. Mbeki is known to be intelligent. He was known to understand economics. But he backed, for example, a truck driver who began selling two bottles of potion that he called uBehjane. One bottle had a blue cap, the other a white cap. One controlled the CD4 count, the other t
he viral load. The government promoted uBehjane, and later the equally implausible and dangerous “treatment” peddled by Dr. Matthias Rath, a German physician selling multivitamins who still sells multivitamins.23 The Treatment Action Campaign, a group of activists fighting to get the government to provide ARVs, refers to him as “the charlatan Matthias Rath.” The vacuum of ignorance has plenty of room for quackery. Any pandemic unleashes the same mixture of terror and ingenuity. In nineteenth-century Ireland, to beat the new, awful cholera, a bishop devised a pyramid scheme, where Irishmen had to burn “blessed turf,” then deliver it, by running, to seven other dwellings. This would save them from the cholera, and exhaust many Irishmen. One ran thirty miles to find a house that had not yet received the blessed sod.24
This was the environment into which Goemaere tried to set up a project. It failed. He didn’t like South Africa, having been arrested during apartheid for refusing to sit in a whites-only waiting room. He was preparing to leave when he was telephoned by Zackie Achmat of TAC. Achmat invited him to Khayelitsha. He accepted and made his way to the hospital clinic at Site B where he was made thoroughly unwelcome. The nurses didn’t want to talk to him. Perhaps they were denialists; perhaps they feared the denialists who controlled their jobs. But Goemaere followed a limpet strategy and simply hung around. He found that in fact the staff were terrified. They knew nothing about HIV or transmission, despite the fact that they were running a limited PCMT—prevention of mother-to-child transmission—program using AZT that had been grudgingly set up by the government. The staff eventually admitted that they thought MSF’s presence attracted HIV. To this, Goemaere pointed out something that was obvious to him: of the people in the waiting room, at least a third were HIV-positive. HIV was already in the clinic, in droves, whether MSF was there or not. This was his supposition. The previous year only 450 people in Khayelitsha had been tested. But by now people were dying of AIDS so frequently, the cemeteries had cut funeral services down to half an hour each, unthinkable in a culture where funerals were usually long, loud, important events.
