Peer educators spread the word about HIV prevention one little blue pill at a time.
Every morning, Mandisa Khumalo* (37) gets out of bed, brushes her teeth and cleans her house. After she’s sent her two children off to school, she gets ready for work.
Before leaving, Khumalo opens a white Panado container and takes out a blue pill to swallow with water.
But the blue tablets are not Panado capsules. They are HIV prevention pills, also known as pre-exposure prophylaxis (PrEP) medication, that drastically reduce her risk of getting infected with HIV.
“I am a sex worker, you see,” she says. “I’m HIV negative and I want to stay that way.”
Khumalo is also a peer educator at the Johannesburg-based Wits Reproductive Health and HIV Institute (WRHI). She helps the institute build relationships with sex workers. For the past year, Khumalo has been recruiting sex workers for the organisation’s HIV prevention programme. She helps them access health and legal services.
Part of Khumalo’s job is to promote the use of PrEP among HIV-negative sex workers. But this hasn’t been easy.
“It was particularly hard in the beginning. Sex workers didn’t understand how the pill worked and weren’t interested in it,” says Khumalo.
Between June and October, the organisation tested more than 600 sex workers who live in central Johannesburg. About 500 tested HIV negative, but only 76 have started on the PrEP programme.
Often, this is because sex workers don’t have enough information about PrEP.
“Many of them would ask: ‘Why must I take treatment when I am not sick?’ But after explaining that it is to prevent HIV, they would be willing – especially when they found out that there are other sex workers who are on PrEP.”
In December 2015, South Africa became the second country in the world to approve a two-in-one antiretroviral drug, Truvada, as an HIV prevention pill. If taken daily, Truvada can reduce a person’s risk of contracting HIV by about 90%, several studies have shown.
The pill contains two antiretroviral ingredients, emtricitabine and tenofovir, that are used to treat HIV-positive people when combined with a third drug.
The South African government announced in March that it would begin providing PrEP for free to as many as 5 000 sex workers at 10 sites to reduce new HIV infections.
Health department research published in 2015 and conducted among 2 200 female sex workers in Cape Town, Durban and Johannesburg found that 40% to 70% were HIV positive. Up to 11% of all new HIV infections in South Africa can be linked to sex work, according to a 2014 study published in the medical journal The Lancet.
At the Chris Hani Baragwanath Hospital in Soweto, the Perinatal HIV Research Unit (PHRU) is quiet. Lerato Ramathibyane* and her colleague share a joke behind the reception desk. The unit conducts HIV treatment research for babies, adolescents and adults.
Ramathibyane is one of the unit’s peer educators.
“We go to hostels where sex workers operate from and explain to them about PHRU and how we can help them,” she says.
Ramathibyane (28) has been a sex worker for 11 years. She started in the profession when she was 17. It was a way for her to pay her college fees.
“I didn’t have parents … I didn’t have money for tuition,” she says.
After her parents passed away in 2003, Ramathibyane and her two sisters went to live with their grandmother. Nkgono, as she calls her, used her monthly pension to put them through tertiary education.
But Nkgono’s money wasn’t enough.
“I was constantly reminded I hadn’t paid my tuition and res fees,” she says. “Things like this can turn you into a sex worker.”
Over the past 11 years, Ramathibyane has tried to find other sources of income, but when money runs out she finds herself selling sex again. She’s had temporary work at call centres but the income wasn’t enough to sustain her family, especially as Nkgono got older.
Ramathibyane heard about the PHRU last year during an outreach visit peer educators were conducting at a tavern she worked from at the time.
“I would come to the PHRU for Creative Space, a monthly session where sex workers meet to talk about their problems and get counselling,” she says.
Ramathibyane learned about PrEP in June from one of the PHRU’s nurses, when she visited the clinic for an HIV test. When she tested negative, the nurse offered the HIV prevention pill to her.
“It is very hard to stay HIV negative as a sex worker. You can be in situations where you are raped by a client or the condom bursts,” she says. “Taking PrEP gives me peace of mind.”
Sex workers are often discriminated against in public health facilities (Madelene Cronje, M&G)
For Ramathibyane, it is important to collect her PrEP treatment from a clinic that is sex worker-friendly. At the PHRU, nurses and doctors don’t judge her for being a sex worker. “At most other clinics, they do,” she says.
Stigma and discrimination against sex workers, particularly against transgender and male sex workers, weaken HIV prevention efforts and decreases sex workers’ access to healthcare, a 2013 study published in the journal Culture, Health & Sexuality found.
“They make it hard for people like me to get treatment and protect ourselves. They intimidate us. Nurses will embarrass you and ask you why you want PrEP while you are standing in a line,” says Ramathibyane.
According to the PHRU programme manager Venice Mbowane, the organisation provides PrEP to 17 sex workers. The programme started in June.
The PHRU and the WRHI are two of three facilities in Gauteng selected to hand out PrEP to sex workers on behalf of the government.
Only sex workers who are HIV negative can use PrEP. Those who test HIV positive start lifelong antiretroviral treatment, which is offered at the PHRU and WRHI.
HIV-negative sex workers are screened for other medical conditions, such as liver problems, that might prohibit them from taking Truvada. Tenofovir, one of the ingredients in the HIV prevention pill, is excreted through the kidneys, according to Kevin Rebe from the Anova Health Institute.
“This could challenge the kidneys slightly. A medical professional would have to test that your kidney function is normal and monitor it throughout your use of PrEP,” he told Bhekisisa in April.
HIV-negative sex workers with normal kidney function can usually start PrEP within three days of taking an HIV test. Once a person has started PrEP, national guidelines say they should come back every three months for an HIV test and to refill their prescription. This is to ensure that people who might become HIV positive are switched on to a three-drug regimen for HIV treatment quickly.
Khumalo and Ramathibyane say they have not experienced side effects from their Truvada pills; studies have shown that nine out of 10 people have no side effects.
According to the health department’s deputy director general for HIV, Yogan Pillay, more than 7 000 sex workers in South Africa were tested for HIV between June and September this year. About 400 sex workers were started on PrEP and more than 900 workers who tested HIV positive were started on antiretroviral treatment.
But the department is not only targeting sex workers. Pillay says men who have sex with men and young women between the ages of 15 and 24 will also be prioritised for PrEP in the future. Studies have shown that these two population groups, along with sex workers, are getting infected with HIV at a faster rate than the general population.
Pillay says: “The department will be expanding to more sex worker programme sites. In the case of men who have sex with them, we have started with the two centres of excellence that provide the PrEP pill to men who have sex with men and will expand access to PrEP to a further six sites.”
Khumalo stuffs small clear packets into a grey reusable shopping bag. Each packet contains 100 male condoms, two female condoms and 10 sachets of lube. She and four of her colleagues are preparing to do their weekly outreach at one of the brothels in downtown Johannesburg. PrEP doesn’t provide protection against sexually transmitted infections other than HIV, research has shown, so condoms are still essential.
It’s raining, and Khumalo doesn’t have an umbrella. But she’s determined to make the long trek. She picks up the shopping bag and straps it over her shoulder.
“We are all sisters and we take care of each other. I must go see them, no matter what.”
*Not their real names