For the last six months, Thulisile has been taking pills used to treat people with HIV. But she’s perfectly healthy. The 20-year-old South African is on an antiretroviral drug that, if taken every day, is more than 90 percent effective at stopping her from contracting HIV, even if she has sex with someone who is infected with the virus.
While taking a pill every day for some isn’t such a big deal, for Thulisile it’s a huge commitment. “You do it because you know it prevents you from HIV, but the pill is big – it’s hard to swallow,” she said. “To take it every day at the same time – it’s like I’m living with HIV already.”
Thulisile may be reluctant, but she also knows she’s lucky. She is one of a handful of young women taking part in a pilot program to see if giving pre-exposure prophylaxis, or PrEP, to sexually active, HIV-negative young women can lower the rate of new HIV infections in South Africa, where around 7 million people currently live with the virus.
In sub-Saharan Africa, girls and young women account for 71 percent of new HIV infections among adolescents. The global health community has set itself ambitious goals to reduce the rate of HIV infections by 40 percent among adolescent girls and young women by 2017 in 10 sub-Saharan African countries. To that end, several countries in the region have launched PrEP pilot programs similar to South Africa’s. But experts have said any efforts to reduce HIV infection rates will fail unless countries first address the barriers that stop women from accessing essential health services, including stigma, gender-based violence and a lack of education.
While the effectiveness of PrEP is still debated, the technique has been gaining acceptance as a method for curbing the spread of HIV. In 2014 the World Health Organisation (WHO) recommended offering PrEP to men who have sex with men – a group known as MSM – but last year broadened its recommendation to include all people at substantial risk of HIV infection.
South Africa’s Medicines Control Council approved PrEP last year, and in June began rolling it out among selected sex worker programs across the country. Before making PrEP available to other groups at high risk of HIV infection, researchers are conducting the pilot program to assess how well young people – who are likely to skip a dose here and there – adhere to the daily treatment and whether they suffer any side effects from the medication.
Right now, the program involves HIV-negative adolescents between the ages of 15 and 19 in Cape Town and in the South African township of Soweto in Johannesburg. According to Linda-Gail Bekker, deputy director of the Desmond Tutu HIV Centre at the University of Cape Town and one of the lead investigators in the pilot, the plan is to eventually roll it out to other parts of the country. But that depends on funding and the capability of the health system. “Who we give it to to prevent ongoing infections will help with the ‘bang for the buck,’” she said. “These are some of the issues to iron out in the next weeks to months.”
Nomtika Mjwana, spokeswoman for the Sexual and Reproductive Justice Coalition in South Africa, believes the sooner PrEP is widely available to young women and girls, the better. And alongside the drug, she said, more needs to be done to educate women and girls about their healthcare options. “We need to look at the different support structures that are in place to support women’s access to these services,” she said.
Mjwana welcomes the pilot program in South Africa, but questions how it can be put into practice on a wider scale. “In order to normalize prevention strategies and create access for young people, we need to normalize the fact young people are having sex,” she said. But one of the biggest barriers to girls accessing sexual health advice and treatment, she said, is stigma and shame around visiting clinics.
“Healthcare workers are women and they’re the ones who are chasing girls away,” said Mjwana. “They have a problem with the fact that young girls are having sex. So we have the prevention tools, but when it comes to implementation, it’s just not happening.”
One of Thulisile’s friends, who asked not be named, said she has been put off asking for reproductive health advice at public clinics because of the attitudes of the staff at health centers.
“When you go to a clinic and want to have family planning [advice], they start asking questions. It’s like you’re being interrogated,” said the young woman. “At the end of the day you go home, engage in sex … then you can become pregnant and infected by HIV.”
She suggested staff need to be trained in how to communicate with young people without making them feel judged. “We need to make PrEP available at every local clinic [but we also need] to have someone more understanding who is able to work with youth,” she said.
Bekker agrees, adding that healthcare worker attitudes have to change whether or not PrEP is part of the picture. But the drug could provide a unique opportunity to finally engage with healthcare workers, she says.
“Healthcare workers need to be included in the process as much as possible and we should use innovation and creativity to do it,” says Bekker. “Not just an ‘or else’ directive.”