It’s like so annoying, it’s literally so huge — it’s like sugar bean-sized — but you gotta do what you gotta do to live,” says Natalie*. She laughs a little to herself. It’s the only hint of self-consciousness that breaks through what is otherwise a conversational tone — even when she’s talking about the most intimate parts of her life.
Natalie is a transwoman from Cape Town. She started taking the HIV prevention pill Truvada about a year ago, as part of a project conducted by the Desmond Tutu HIV Foundation among men who have sex with men.
For Natalie, who is in her early 20s, this has been a “life-changing experience”. It has drastically cut her risk of HIV infection.
Truvada contains two of the antiretroviral (ARV) drugs that people with HIV use to suppress the virus in their bodies. When ARV treatment is used by HIV-negative people to reduce their chances of contracting HIV, it’s called pre-exposure prophylaxis (PrEP). Research has shown that, when taken once a day at more or less the same time, Truvada can reduce a person’s risk of contracting HIV by more than 90%.
Nine out of 10 people in PrEP studies reported no side effects. Those who did, experienced minor gastrointestinal issues such bloating, nausea, stomach cramps and reduced appetite, but most of these disappeared within the first few weeks.
According to Kevin Rebe from the Anova Health Institute, another side effect is kidney dysfunction. “Tenofovir [one of the ingredients in Truvada] is excreted out of the body through the kidneys. 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.
Peace of mind
But Natalie says the side effects she’s experienced are nothing compared with the peace of mind the pill has given her.
“I had an episode where something shady happened,” she says, glancing around before flipping her long braids over her shoulder. “Okay, the condom broke.”
She leans in. “I was so anxious. Thank God I was on the PrEP pill because I never had any problems.”
In June, South Africa began giving PrEP to about 100 sex workers, as part of what may eventually become a national roll-out to provide the medication to larger numbers of sex workers and to other high HIV risk groups such as young women and men who have sex with men. Demonstration projects are underway in Cape Town and Johannesburg to look at how well PrEP works for each of these groups and how consistently they use it.
Lisselle* received early access to PrEP as part of a small pilot project. Working amid Hillbrow’s high-rise flats and bustling streets as a sex worker, she says at first PrEP was her secret.
“I was hiding my pills from my partner [boyfriend]. I would take them and put them in a Panado bottle and take one every day,” she remembers. “One day, my partner looked at me and said: ‘Are you not going to be getting addicted to these Panados you are taking every day?’”
Lisselle says she eventually told her boyfriend about the medication and, like some other young women on PrEP in Johannesburg, found it easier to take the drug after she was able to tell those closest to her.
She now spends part of her time working for the Wits Reproductive Health and HIV Institute and encouraging other sex workers to consider PrEP, and has found surprising levels of interest in the most unexpected of places: her customers.
“The clients ask: ‘Why are you giving only ladies these pills?’ ” she says. “They say: ‘You must give them to us too because we also want to protect ourselves.’”
Many sex workers have complained that they will not start PrEP unless it is also offered to their boyfriends, according to South African National Aids Council chief executive Fareed Abdullah, who reported early results from the roll-out at last week’s International Aids Conference in Durban.
Understanding our differences
Sisters Dineo* and Pumla* go to university in Johannesburg and are in their early 20s. This makes them part of the sexually active group of South Africans that is most at risk of HIV infection. The Human Sciences Research Council’s latest national HIV household survey found a quarter of all new infections in the country occur among young women between the ages of 15 and 24.
Dineo and Pumla started taking the HIV prevention pill in June. The two took what many would consider an unusual decision: they told their parents they were taking the pill. But this, they believe, has helped them to overcome what they regard the single biggest challenge young people taking the pill face: taking it consistently.
Studies have mostly found that men who have sex with men and sex workers take PrEP more consistently than young women who are not sex workers. The 2010 iPrex study published in the New England Medical Journal found that between 90% and 99% of about 2 500 men who have sex with men took Truvada correctly — every day at more or less the same time — for a period averaging a year and a half. Less than half of women on PrEP were found to have taken the drug consistently, in a subsequent 2012 study published by the journal.
Truvada also can’t be used “once off”. According to Rebe, the pill has to be used daily for at least a month to get a high-enough concentration of the drug in a woman’s vaginal tissue to shield the immune system cells from being infected with HIV when exposed to the virus.
The future of PrEP may not be a pill
But Dineo says it’s difficult to take Truvada consistently. “To take a pill at the same time every day — it’s like I am already living with HIV,” she says. “It’s hard to swallow, even though you do it because you know it helps protect you against HIV.”
She adds: “If there were more options to choose from, like in the prevention of pregnancy — you have condoms, pills, injections — I’d prefer an injection.”
Pumla says she also would prefer a monthly or weekly injection. Side effects force her to stop taking PrEP during exams: “The pill gives me some side effects like headaches, being dizzy and stomach cramps, so I can’t take it every day. If I have to study, I won’t take it because I will have to sleep because I will be feeling sick.”
Researchers are looking at whether PrEP could be delivered via long-term injections or vaginal rings, and even if it could be taken as and when needed.
“We started with Truvada because it’s a once-a-day pill, easy to store, widely available, causes minimal predictable side effects, and it’s powerful enough to control HIV. But trials with other ARV drugs are underway,” says Rebe. “We will not only be looking at new drugs to trial to see if they work as prevention, but also at new delivery methods. The answer might be injectable PrEP. For women, perhaps what we need is a bimonthly two-in-one injection consisting of a contraceptive and PrEP, then you don’t have to worry about taking a pill every day.”
Linda-Gail Bekker, the head of the Desmond Tutu HIV Foundation, says: “Long-acting PrEP agents, which require a depot intramuscular injection every eight to 12 weeks, are currently undergoing efficacy testing in South Africa and other countries.
“Even more exciting are the prospects for an antiretroviral agent so powerful it can be encapsulated in a small rod, requiring a subcutaneous implant only every six to 12 months. Those human trials will begin later this year, hopefully also in South Africa.”
*Not their real names