Since the country’s rollout, less than a quarter of people who’ve started taking the HIV prevention pill are young women — despite high HIV rates.
Asiphe Ntshongontshi, 23, plants a small “X” on the family calendar hanging on a wooden wardrobe. Her parents think she’s tracking her period so that the hospitality student isn’t caught unaware when her “monthly visitor” hits.
Every evening the Ntshongontshi family religiously bond over dinner and television. Like most Fridays, Ntshongontshi’s favourite soapie, Generations: The Legacy, ends with a cliffhanger:
“Surprise, surprise, Jack,” the soapie character Zitha announces from the screen in the family’s home. She’s just escaped death from Jack’s hitman, leaving her rival shocked. Brandishing a gun, Zitha bursts into an evil chuckle:
“There’s only one person dying tonight, and that’s you.”
As the credits begin to roll, Ntshongontshi’s cellphone bleeps out its usual alert — a signal for another ritual.
It’s a routine only she knows about. It’s time to take her daily pill.
Ntshongontshi walks to the kitchen and runs the water to wash the day’s dishes. As water pours into the basin, she fills up a glass of water and, secretly, pops a large, blue pill into her mouth.
Another “X” goes up on to the family calendar. Ntshongontshi’s charting how often she takes the HIV prevention pill — also commonly known as PrEP or pre-exposure prophylaxis.
PrEP comes in the form of a tablet called Truvada, which contains two antiretroviral (ARV) drugs, emtricitabine and tenofovir. Studies have shown that, when the pill is taken daily, Truvada can reduce a woman’s chances of contracting HIV by more than 90%.
But Ntshongontshi has to keep her secret to herself.
She explains: “I don’t want my parents to think that I am a naughty child.”
Green trees surround the yard of the Desmond Tutu HIV Foundation’s offices in Masiphumelele, about 40km outside Cape Town. The building’s bright orange and green colours pop against a pale, cloudless blue sky.
The air is dry and dusty.
Across the street, the local high school has just finished for the day. Dozens of pupils in navy and white uniforms are making their way to the large youth centre that sits adjacent to the foundation’s offices.
Once they’ve crossed the gravel road, pupils head to the centre’s reception where they greet a trio of receptionists before placing their index fingers on a digital fingerprint reader. A bright flash of light from the scanner records their attendance and registers a point, or a “Tutu”, in the student’s account at the centre. Twenty-four Tutus buy a sandwich and juice.
Sign up to use the organisation’s computers next to the pool tables or extra tutoring sessions and you can rack up another handful of points. If you visit the in-house youth clinic or take an HIV test, you can see as many as 100 Tutus tumbling into your account.
In the hall next door, a large colourful mosaic of the foundation’s namesake, Archbishop Emeritus Desmond Tutu, hangs on the wall. Underneath the Arch’s smiling gaze, staff hold pop-up sessions with young people about sexual and reproductive health or new programmes.
It was here where Ntshongontshi first heard about the HIV prevention pill.
At the time, she was struggling to afford clothing. It wasn’t something her parents had a budget for and she was tired of wearing and washing the same clothes every week. Ntshongontshi had been in a longterm relationship with her boyfriend, but he wasn’t in a position to help either. So she turned elsewhere, finding a man 10 years her senior.
Her boyfriend was her “minister of love”. The other? “The ‘minister of finance’,” she explains.
Ntshongontshi is sitting on a steel chair next to a table in the boardroom of the centre.
“As a person, you feel that this partner is just going to give me love. He’s not earning that much.”
She touches her long dreadlocks.
“Then I would have my eyes open for another guy that is going to provide me with money — ‘the minister of finance’.”
But there was a price for the “minister of finance’s” support.
“Obviously, when he started giving me money, maybe after four months, he demanded sex without a condom,” Ntshongontshi explains.
“I couldn’t say no because he gave me money.”
Three times as many young women between the ages of 20 and 24 are infected with HIV than men in the same age group, South Africa’s latest HIV household survey shows. Several studies have found that young women in relationships with older men are particularly at risk of contracting the virus.
One study revealed that more than 60% of new infections in women between the ages of 15 and 24 in the KwaZulu-Natal community of Vulindlela were linked to men between the ages of 25 and 40. The research, presented at the 2016 International Aids Conference, used genetic sequencing to track how the virus had moved through segments of the community.
Older men are more likely to be infected with HIV than adolescent men, a 2015 study published in the South African Medical Journal found, because they have had much more time to contract the virus.
Age gaps can also amplify inequalities in sexual relationships, making it more difficult for younger women to negotiate safe sex, researchers argue. To combat this, the country’s national HIV plan says that programmes to reduce young women’s risk of contracting HIV — such as PrEP — need to be rolled out. The strategy hopes this will reduce new infections among adolescent girls and young women from 1 300 a week in 2017 (according to figures from the Human Sciences Research Council) to less than 800 a week by the end of 2022.
In Masiphumelele, Ntshongontshi’s “inter-ministerial relations” had started to fray. Unable to negotiate safe sex with her older partner or her boyfriend, she had to come up with a plan to keep her true love — and everyone else — safe.
She decided to become part of the Desmond Tutu Foundation’s PrEP programme for young women, collecting her tablets from the youth clinic every three months.
“I cannot just go to my boyfriend and say, ‘this time let’s start with a condom’. He’s going to have suspicions and I don’t want him to know that I am cheating,” she explains.
“So I started taking PrEP, so I can protect my partner.”
On the outskirts of Cape Town, a young woman leaves home, locking the door behind her. She walks past the green-painted corrugated iron and pink roses of her neighbours’ homes. Then she stops to buy a half a loaf of bread and joins her friends at a picnic table under some trees to have lunch.
“[PrEP] is like a pregnancy prevention pill. If you take [birth control] every day you won’t fall pregnant,” she tells her friends.
“If you take PrEP every day, you won’t catch HIV. I use it because I want to be in control.”
The young woman is a character in a documentary.
For most women who join the Desmond Tutu Foundation’s PrEP programme, this film — played on tablets at the foundation’s youth centre — will be their first introduction to the HIV prevention pill.
South Africa is the second country on the continent to begin providing PrEP. But unlike Kenya, which rolled out the prevention pill to anyone who wanted it, South Africa chose to pilot PrEP first in groups at a high risk for contracting HIV.
In 2016, the government began offering PrEP to sex workers before rolling it out to men who have sex with men and then finally to young women in universities. The department began targeting out-of-school women like Ntshongontshi in May 2018.
But it’s been difficult to get young women to buy into the pill.
Only 6% of female university students offered PrEP in the first six months of the programme — mostly through services provided on campus — said yes to the once a day pill, the deputy director general at the national department of health, Yogan Pillay, told Bhekisisa in 2018.
By contrast, about half of men who had sex with men who were given the option of PrEP took it during the first year of the programme. In total, South Africa’s public PrEP rollout has started about 12 000 people on the prevention pill in its first three years — but less than a quarter of these people have been young women.
Whether or not young women start and stay on the HIV prevention pill may be less about facts and more about feelings. In 2015, Desmond Tutu foundation researchers conducted a small study among about a dozen young women just like Ntshongontshi about how they felt about possibly taking PrEP. The study’s participants were from Masiphumelele.
Despite years of national campaigns aimed at telling young women that they had a high risk of contracting HIV, many felt that their chances of becoming infected were different. Several believed their likelihood of contracting the virus depended more on how much they trusted the men in their lives based on, for instance, how long they had known each other and their level of commitment.
But the study, which was published in the journal AIDS and Behavior in 2018, also found that women were generally interested in preventing HIV and in the once-a-day pill — regardless of how they felt about their relationships.
Women in the Masiphumelele community also told Bhekisisa they were also keen to start PrEP because high levels of sexual and gender-based violence made them fear contracting HIV after being raped.
Understanding how women see their individual HIV risk is important, the deputy director of the Desmond Tutu HIV Foundation, Linda-Gail Bekker explains. Otherwise, it’s hard to speak to them about their lives and selling them on the idea of PrEP.
She continues: “Nobody wants to be thought of as a high-risk individual, right? It’s very stigmatising. What I think we want people to say is: ‘Do I have a risk of exposure to the HIV virus?’”
Part of destigmatising the HIV prevention pill may be a bit of a rebrand and getting more women to think of it not as a lifelong treatment but a short-term prevention method — like birth control.
“The best analogy for PrEP, in my opinion, is family planning,” Bekker says.
“As a woman … sometimes you’re not on contraception because you’re wanting to get pregnant. Sometimes you know you’re not going to want to get pregnant for weeks or years and then you might use a long-acting methodology like an implant.”
And because PrEP isn’t about treating an illness, women shouldn’t get it from clinics — places people go to when they’re sick.
“We need to find other avenues [for giving out PrEP], such as mobile clinics … because in a way we want to keep the health facilities for sick people,” Bekker says.
“These are not sick people; they are people who are well and they are seeking prevention.”
The foundation, for instance, also distributes PrEP from their rainbow coloured mobile clinics called Tutu Teen Trucks. The vehicles reach young women between the ages of 16 and 25 in Cape Town areas such as Khayelitsha, Nyanga and Philippi.
And whether it’s a truck or a youth centre, young people want respectful spaces that work for them and around their lives, including school hours, Bekker says.
She argues that rebranding the HIV prevention pill for women is only a small part of getting it into their hands. There is a need for more widespread education on PrEP, not only among women but also among the healthcare workers who will need to sell women on the service to drive demand for it.
“We don’t know if we want to roll this out because we don’t get the impression that the population at large wants to use it.
“But we also know that the population at large won’t use something they don’t know about or are suspicious about. And we know from the ARV rollout or any new thing that comes into the public sector, people take a while to catch on.”
In Masiphumelele, Ntshongontshi has since broken up with the “minister of finance”.
She says the counselling she received from the youth centre when she collected her medication made her realise that she was putting herself at risk for HIV and other sexually transmitted infections.
She has also stopped taking PrEP. Ntshongontshi found herself a part-time job at a local nongovernmental organisation, so she can support herself.
She smiles and says: “It feels good to spend my own money.”