LWENGO, UGANDA — Ahmed was certain the test result was wrong. It was 2003, and he and his five months-pregnant wife were at a health facility where she was getting a checkup. As staff did for all expectant parents, a worker prodded them to get tested for HIV. Ahmed’s wife tested negative. He did not. “I thought it was impossible, that my results must have been mistakenly switched with another person’s,” he says. That week, he took two more tests. Both confirmed he was infected with the virus that causes AIDS.
Health workers and Ahmed’s four wives begged him to start antiretroviral therapy, a cocktail of medications that prevents the virus from multiplying and reduces a person’s likelihood of spreading HIV and developing AIDS. At the time, Ahmed was in his early 40s; to his family, forgoing treatment seemed like courting a premature death. But he didn’t feel sick — no fever, chills or other symptoms — so he refused. Accepting treatment would have meant accepting a diagnosis he didn’t entirely believe, and the stigma that came with it.
Ahmed lives in Lwengo, a town about 165 kilometers (102 miles) southwest of Kampala, the capital. Amid a sweep of banana, cassava and coffee fields, small, white-roofed houses, and tarmacked roads, HIV is something to hide lest neighbors shun or mock a person as a “walking dead.” (That’s why Ahmed asked to be identified only by his first name.)
Two decades later, Ahmed has never received HIV treatment, but he remains in good health for a man in his 60s, and none of his wives or three children has contracted the virus. That’s not because he was misdiagnosed. A researcher who visited Lwengo years ago confirmed via testing that Ahmed is a so-called elite controller, a person with HIV whose viral load stays low without antiretroviral therapy. Even so, the World Health Organization and the Ugandan government recommend elite controllers undergo treatment to reduce the chance they will infect others.
While elite controllers make up a small sliver of Ugandans with HIV, they represent a potentially significant hurdle to the country’s goal of snuffing out new infections by 2030. Ahmed and those like him can essentially pretend they don’t have the virus. Why, some ask, should they start antiretroviral therapy, with its potential physical side effects and social stain? In this way, elite controllers represent a distinct and timely public health quandary, one that became all the more apparent amid global efforts to vaccinate people against the coronavirus, and the resistance, conspiracies and fear that fomented. How can people be convinced to get medical treatment they don’t want?
It was witchcraft. To people in the fishing village of Kansensero, 238 kilometers (147 miles) south of Kampala, no other explanation made sense. What besides sorcery could so quickly whittle a man or woman to skin and bones? “Slim disease,” they called it. In the 1980s, Uganda was home to “the world’s first devastating, population-wide AIDS epidemic,” initially centered in Kansensero, but soon radiating to all corners of the country, health policy researcher John Kinsman writes in the book “AIDS Policy in Uganda.” By the mid-’80s, President Yoweri Museveni had risen to power by leading an insurgent army, and the new leader was determined to halt the plague that was ravaging his soldiers, and so many others. Thus, began decades of prevention efforts focused, in part, on finding the right public health messaging.
“When I realized I had a chance to live a long life with treatment, I started taking medication”
Earlier than many countries, Uganda adopted a strategy that included acknowledging the virus and its dangers, and launching campaigns to encourage risk-reducing sexual behavior. Local councils, churches, television, even theater troupes — all were vehicles for HIV-prevention efforts. At first, officials believed Ugandans would not use condoms and pleaded with them to embrace “zero-grazing.” The agricultural term for feeding livestock within an enclosed space had a second, widely understood meaning: to stay faithful to a sexual partner or, for Uganda’s polygamous families, partners.
By the 1990s, simply encouraging fidelity was no longer enough: Nearly 1 in 5 Ugandans was infected with HIV. Public health messaging evolved. Later dubbed the “ABC” campaign — for “abstain, be faithful or use a condom” — Uganda’s efforts greatly influenced the prevention prong of a multibillion-dollar United States initiative in the early 2000s to combat the virus in Africa. This, combined with the increasing availability of antiretroviral drugs, helped Uganda become a global success story. These days, less than 6% of Ugandans ages 15 to 64 live with the virus.
Uganda was one of eight countries in 2020 to meet key United Nations targets: 90% of people infected with HIV know their status; 90% of people who know their status start treatment; and 90% of people getting treatment have suppressed viral loads. By the end of this decade, Uganda hopes to boost each of those numbers to 95%. However, it’s easier to slow an epidemic than to eradicate it. To do so, public health officials say, they need to persuade holdouts to seek treatment, including elite controllers.
Nakisanze Segawa/GPJ Uganda
Kawempe National Referral Hospital is a public health center in Kampala, Uganda, where people are tested and treated for HIV. Because the virus carries so much stigma, some people with HIV are afraid to go there, lest their neighbors discover their diagnosis.
Live as if virus-free
Human immunodeficiency virus is transmitted via semen, blood, breast milk and other bodily fluids. Once inside a person, it wastes little time annihilating their T cells, white blood cells that help fight off infections. It’s the equivalent of dismantling the wall around a castle, stone by stone, until the castle is completely unguarded. When someone is sick with HIV, even the flu is a potential catastrophe. In about 1% of people, however, the wall mostly withstands the viral assault. They are less likely to experience the flu-like symptoms characteristic of early infection, or to succumb to such diseases as cancer and tuberculosis that prey on weakened immune systems, even if they forgo treatment. These are elite controllers, and they are a source of both scientific fascination and public health worry.
Researchers aren’t sure why they can fend off the virus. “It could be the way one’s immune system reacts and adapts to the early stages of HIV infections, or genetics,” says Dr. Cissy Kityo, executive director of the Joint Clinical Research Centre, a Ugandan government-backed venture to study HIV. It’s also unclear if elite controllers can transfer the virus through sex, although scientists know of no documented case of that happening, according to a 2020 study in Pathogens and Immunity, a U.S.-based academic journal. In that knowledge gap lies risk. “The possibility of transmission isn’t zero,” Kityo says.
Some elite controllers can spread the virus through plasma, the liquid component of blood, turning blood transfusions or treating injuries into high-risk activities. And over time, their resistance to HIV may wane, making them more likely to experience cardiovascular disease or hospitalization. “We understand that the virus is very clever,” says Dr. Jane Ruth Acheng, who runs Uganda’s Ministry of Health. “It hides in the reservoirs such as the brain, and they — even when the virus isn’t detectable in the bloods — might still transmit the virus.” That’s why officials encourage elite controllers to take antiretroviral medicine: to eliminate risk entirely. It’s a tough sell. Taking it protects the community, and perhaps their own health long term. But declining it protects their current relationships and social standing, and allows them to live as if virus-free.
Facing the stigma
Three pills a day, every day, for the rest of his life. That was the regimen Steven Watiti started after he tested positive for HIV in his early 40s. A tall, slender doctor, Watiti knew the risks of stopping antiretroviral therapy, but if he wasn’t woozy, he was throwing up. How could forgoing the pills be worse? Watiti is not an elite controller. Once he stopped treatment, his immune system buckled; soon his body was riddled with tuberculosis, meningitis and a cancer called Kaposi’s sarcoma. “When I realized I was dying, yet I had a chance to live a long life with treatment, I started taking medication,” he says nearly three decades later, sitting in his small, tidy office in Wakiso district, just west of the capital. Among Watiti’s medical duties: counseling patients with HIV, often by sharing his own story. It’s a strong argument for treatment, even for elite controllers: Yes, there are drawbacks to taking antiretroviral medication, but what if they infect their loved ones, and their loved ones suffer like he did?
In Uganda, antiretroviral medicine is free at government health centers, but going there means potentially revealing the diagnosis.
Yet in matters of public health, a strong argument isn’t always enough. People have long been susceptible to medical conspiracies and misinformation, and social media has widened their reach and resiliency. A textbook example: suspicion of the coronavirus vaccines. In a recent survey of Ugandans published in the International Journal of General Medicine, nearly 60% said they were wary of the shots, with some believing baseless theories that inoculation would make them infertile, or that they could cure COVID-19, the disease caused by the coronavirus, by eating garlic.
To some Ugandans, HIV still carries a whiff of witchcraft. In a study published in PLOS One, an international scientific journal, Ugandans and Kenyans living with the virus told researchers how their communities diminished them as “a moving corpse,” “a death candidate” and “otolo,” or dead. It didn’t matter if they looked healthy. People refused to share cups with them, or threw away safety pins they’d touched. Some hesitated to disclose their status, even to their spouses. Some considered suicide. In Uganda, antiretroviral medicine is free at government health centers, but going there means potentially revealing the diagnosis. Patients walk long distances to clinics outside their village, dump medication boxes in the bushes or, back home, hide their pills, making it harder to take them daily. “They will not go to seek treatment resulting from fear of being seen by anyone they know at the clinic,” Watiti says. “They think their status would be disclosed to the public, and that scares them.”
What if a person could avoid stigma and still feel fine? Elite controllers can. In this way, they are indicative of how the last gasp of Uganda’s — and the world’s — battle against HIV may be the hardest. Convincing someone to start, and stick with, treatment can’t be done solely through broad-based messaging, says Kityo, the HIV researcher. Rather, it involves confronting each patient’s biases and beliefs. “If they still refuse to take medication after all the interventions have been exhausted, there is nothing government or any other health service provider can do about it,” she says. “A person has to want to take the medication. They can’t be forced.”
Nakisanze Segawa/GPJ Uganda
Iga, a construction worker whose last name and face are being withheld to protect his privacy, stands outside his home in Wakiso district, Uganda. Iga tested positive for HIV in 2015, but doesn’t take antiretroviral medication and says he feels fine.
A construction worker in his 30s, Iga suspected he had contracted HIV as a teenager by having unprotected sex with prostitutes. Friends who slept with the same women were later diagnosed with the virus, and some died of AIDS. All those years, Iga never had symptoms that suggested he was infected, meaning he was likely an elite controller, though he didn’t know for sure. In 2015, he got tested, but only because a mobile clinic visited his village in Wakiso district. He was indeed HIV-positive. (His last name is being withheld to protect his privacy.)
Soon, a health worker called him about starting treatment. This will protect you from deadly illnesses, she said, and help you live a long life. Iga wasn’t convinced. She called a second time. Didn’t work. Then he lost his phone and went about his life. “I still do have unprotected sex with sex workers and other women,” says Iga, a compact, quiet man who rents a room near a matooke banana garden. He only uses a condom if his sexual partner asks. He says it’s a sign of respect, and that she’ll likely be fine — after all, he doesn’t feel sick.
Nakisanze Segawa is a Global Press Journal reporter based in Kampala, Uganda.
TRANSLATION NOTE: Nakisanze Segawa, GPJ, translated some interviews from Luganda.