Lindiwe Mvubu’s 11-year-old daughter, Slindile, loved her Durban, South Africa, school so much that she would go to bed in her uniform if her mother didn’t stop her. So Mvubu knew something was wrong last spring when Slindile’s usual enthusiasm at starting her school day turned to outright foot-dragging.
“I asked her, ‘What’s happening?’” recalled Mvubu on a recent trip to Seattle, where she is a community adviser to the HIV Vaccine Trials Network (HVTN), headquartered at Fred Hutchinson Cancer Research Center. “She would say, ‘Mommy, the children are mean to me.’”
Mvubu advised Slindile to tell her teacher at the all-girls school, one of the best in Durban. Six weeks passed, and though it was obvious to Mvubu that things still weren’t right, the usually talkative Slindile went silent when pressed for details.
Finally in May, Slindile was sent home after spending all day in the restroom, claiming to have the flu. Once again, Mvubu implored her daughter to tell her what was wrong.
“I told her, ‘No matter what’s going on, I’ll support you,’” she said. “Those words were a breakthrough. She started crying — and she’s not a crier.”
Slindile told her: “Mommy, they think I have HIV.”
Mvubu was both surprised that Slindile’s classmates thought she was infected and outraged that they would be cruel to her for that reason. She was even more stunned when she found out what had raised their suspicion: Slindile had taken a water bottle with the HVTN logo to school, which was all it took for her classmates to conclude that she had HIV. Compounding their suspicion was the fact that Mvubu herself had lost weight — the result not of “slim disease,” as AIDS has long been known in Africa, but of a New Year’s resolution diet.
More than 30 years into the HIV pandemic, stigma — the fear, shaming, blaming and discrimination directed at people infected with or even associated with HIV — remains as persistent as the virus itself, whether among children or adults, gays or straights, in South Africa or Seattle.
“It’s not as direct or visible, but it’s still pervasive and deep,” said Erick Seelbach, an HIV educator in Seattle. “The reality is, the epidemic is still around because of stigma.”
The plague years
“Considering illness as a punishment is the oldest idea of what causes illness,” wrote social critic Susan Sontag in her seminal 1988 essay, “AIDS and its Metaphors.” “‘Plague’ is the principal metaphor by which the AIDS epidemic is understood. And because of AIDS, the popular misidentification of cancer as an epidemic, even a plague, seems to be receding: AIDS has helped to divest cancer of much of its aura of shame, of the unspeakable.”
To be sure, the stigma around HIV today is not as brutal as it was in the early, panicked days, when radio pundits called for quarantines and undertakers would sometimes refuse to accept the bodies of those who had died of AIDS.
“In the early days with HIV, we who were the physicians were among the few people who would talk to HIV patients,” said Dr. Larry Corey, an internationally known HIV researcher, principal investigator of the HVTN and president emeritus of Fred Hutch. “I would consciously walk up and shake their hands, put my arms around them, give them a hug, as a way of showing others that we’re not going to acquire HIV this way.”
But stigma has never entirely gone away, and neither have its public health consequences. The stigma surrounding HIV can lead to a fear of being tested for it, and if testing confirms infection, it can lead to the fear of disclosing one’s status to sexual partners. Stigma also can lead to forgoing treatment to avoid being seen taking pills or waiting in line to get medication.
The new stigma
In the United States, antiretroviral drugs that turn HIV from a death sentence to a chronic disease have been available since 1996, about a decade longer than in Africa. The miracle drugs yanked lives back from the brink of death. They also created a sense that HIV is no longer a problem here. But statistics released last week by the U.S. Centers for Disease Control and Prevention made clear that’s not the case.
Of the estimated 1.2 million Americans living with HIV, just 30 percent have the virus under control through antiretroviral medication, the CDC reported. That means about 840,000 people in the United States are living with uncontrolled HIV. Of these, 20 percent do not know they are infected and 70 percent have been diagnosed but are not receiving medical care or antiretroviral drugs. (The remaining 10 percent have been prescribed medication that has not effectively controlled the virus.)
Explanations for the lack of testing and treatment include disparities in access to and use of health care, largely driven by underlying social conditions such as poverty. If the early epicenter of the U.S. AIDS epidemic was white and gay neighborhoods in San Francisco and New York, today it is black, Latino, poor, often rural and in the South.
Those not in treatment have poorer health and shorter lives; the average life span of someone infected at age 20 and untreated is 32.
The untreated also are more likely to infect others, as antiretroviral drugs keep the virus at low or undetectable levels, which makes it harder to transmit.
“HIV is just a virus,” said Michael Louella, community advisory board coordinator for the Fred Hutch-based defeatHIV program, a public-private consortium of researchers investigating using genetically modified stem cells to cure HIV. “The HIV epidemic is man-made. Sexism, homophobia, racism — that’s what fuels the HIV epidemic.”
Discrimination and stigmatization become internalized as shame — and make seeking treatment even harder, added Seelbach, a member of defeatHIV’s community advisory board.
“It starts young,” he said. “We get the negative messaging about gay people or black people or women. Shame is the internalized aspect of stigma, leading to feelings of ‘If I’m not worth it, why does it matter?’”
Even among gay men in progressive cities like Seattle who are on treatment, the miracle drugs have changed but not eliminated the stigma associated with HIV. Before, people with HIV couldn’t hide their status, at least once the virus had progressed enough to lead to weight loss and the lesions of Kaposi sarcoma and signs of other opportunistic infections. Such physical changes led to stigmatization and discrimination, true, but also a sense of solidarity and caring in the gay community that many say has gone missing as HIV has, in a sense, gone underground. Today, people with HIV can stay in what has been called the HIV closet: They can “pass” as uninfected.
“Among gay men, there’s a feeling of if you get it, you should have known better,” Seelbach said. “You’ve been stupid.”
The stigma cure
To Louella, the stigma of HIV will end when HIV ends. That means a cure.
“Cure will take care of the stigma more than anything else we can do,” he said. “Cure is the radical game changer. There will be no end of HIV stigma until there is an end to HIV.”
Seelbach, though working toward a cure on defeatHIV’s advisory board, isn’t waiting. In 2002, he joined the Seattle branch of the Sisters of Perpetual Indulgence, where he is known as Sister Glo. Founded in San Francisco in 1979, the sisters are originally best known as campy satirists, tearing around the Castro District on roller skates in traditional nun habits left over from a production of “The Sound of Music.” In the early dark days of the 1980s, when AIDS appeared, they found their calling on the front lines, whether in protests or providing aid and comfort. Their mission, said Seelbach, was “promulgating universal joy and expiating stigma” at a time when joy was all too distant and stigma too present.
That remains their mission today. Their services, Seelbach said, are more needed than ever.
“Our job is to un-isolate you,” he said. “We’re running around in this crazy makeup with these costumes doing this serious work, and we’re OK. And that means you’re OK too.”
Among their activities is a ritual in which they provide Sharpies for people to write down all the things that they are ashamed of, “all of the things we carry that are not helping us achieve joy,” on the sisters’ white veils.
Then they burn the veils.
“The fundamental piece of it is the seeing and witnessing and acknowledging,” Seelbach said. “We acknowledge people’s pain and suffering as real and — without diminishing it — say, ‘Your pain and suffering is not you.’”
The global effort to end stigma
In Zambia, the government and nongovernmental organizations are trying to address the lingering stigma, if not with nuns on roller skates, then with television ads featuring people saying, “I am HIV positive and I’m living positively.”
“In the beginning, there was a lot of stigma and fear,” said Mark Lungu, an HVTN community advisory board member from Zambia. “It used to be you’d go to another town to test, so nobody would know. That’s starting to go away. Since antiretroviral drugs became available, [people with HIV] take medicine like people with diabetes or blood pressure. There is not as much feeling of shame.”
Still, people are careful about to whom they disclose their status, Lungu said.
“It will take a long time to say we have eradicated stigma. But from the levels we were at, it’s better,” said Charles Chasakara, an HVTN community educator from Zimbabwe.
Audrey Tasaranarwo, a community advisory board member from Zimbabwe, has begun working in schools to address stigma early. Children with HIV worry that their classmates will notice them taking pills or missing school to get their medications.
“We encourage AIDS clubs,” Tasaranarwo said. “We work to get churches to support people who are infected.”
The United States has drastically reduced childhood HIV by testing pregnant women for the virus and treating those infected with antiretroviral drugs. Many countries in Africa also have made strides to reduce mother-to-child transmission, but globally, according to the Joint United Nations Program on HIV/AIDS, more than 240,000 children were infected with HIV in 2013.
As for Lindiwe Mvube, she used what happened to her daughter as an opportunity to educate the school’s administrators and students about HIV and stigma.
“I thank God for that day, that’s it’s not my child with the problem, it’s the school with the problem,” she said.
The talk went well, but still, her daughter did not want to return. In July, Slindile began attending a different school in another suburb. It’s larger and enrolls both girls and boys.
Like most changes, this one will take time and determination to get right.
“There are lots of challenges finding things around in such a huge school,” Mvube wrote in a recent email. “But [Slindile] has met new friends. I believe she will be more comfortable next year.”
Mary Engel is a former staff writer at Fred Hutchinson Cancer Research Center. Previously, she covered medicine and health policy for the Los Angeles Times, where she was part of a team that won a Pulitzer Prize for Public Service. She was also a fellow at the Knight Science Journalism Program at MIT. Follow her on Twitter @Engel140.