In 2016, something pretty incredible happened in South Africa. Oral pre-exposure prophylaxis (PrEP), a once-a-day pill that prevents HIV negative people from getting infected with HIV, became available through the National Department of Health (NDoH).
A little bit of background
In 2018, the Wits Reproductive Health and HIV Institute (Wits RHI), a leading partner of the OPTIONS Consortium*, in partnership with the NDoH and the Clinton Health Access Initiative, developed a research study to understand exactly why people chose to use this fairly new HIV prevention method, what motivated them to continue using it and if they did stop, why they decide to do so.
The research was developed to listen to clients seeking health services at clinics, 299 of them to be exact. Women and men from four provinces (Gauteng, Limpopo, KwaZulu Natal and the Western Cape) across South Africa had their say. These clients were either using oral PrEP, had used oral PrEP in the past, had heard of oral PrEP but chose not to take it, or had never even heard of it. More than 60% of the clients we spoke with were female and just over 30% were male. That’s right, oral PrEP works for both men and women. Almost half of the clients who shared their thoughts with us were between 25 and 34 years old, but those older and younger shared their thoughts as well.
So… the big question, what motivates clients to take that step and add a pill-a-day regimen to their prevention options?
When we posed the question to clients, their realisation of their own personal risk of contracting HIV was a major motivating factor. While 20% of clients generally felt at risk of getting HIV, 28% said that being sexually active put them at risk. About 18% of clients felt their risk of getting HIV was higher because they had more than one sexual partner. But we wanted to know more, to understand better and to really get to the bottom of why some clients felt this prevention method was a great option for them. Wanting more than just one prevention method was described as a real need. Some clients said they wanted to know that they would be safe if a condom broke or if their partner was hesitant to even use a condom… peace of mind. Others described personal behaviors and relationships that they felt might put them more at risk: not knowing or being sure of a partner’s HIV status, having multiple partners, perhaps doing sex work, or having a partner living with HIV were all reasons for taking up oral PrEP. The research pointed to a real desire and need from clients to be sure of their protection, to feel at ease, and to know that beyond circumstances they are in control of their status.
Many of the clients felt the fact that they had received helpful and accurate education and communication materials, made their consideration and ultimate decision easier. Several stated that their health providers gave them the information they needed to initiate oral PrEP, and some described health providers giving additional counseling or outreach to help them overcome challenges with taking oral PrEP when they first started. As human beings, we strive to connect with others and feel supported in whatever we do. Many of the clients we listened to highlighted that encouragement from partners, parents, friends, sisters, and other peers really helped them to make the decision to start using oral PrEP and to continue using it.
… So why did clients continue using oral PrEP?
Taking one pill is easy enough for some, but making the commitment to continue taking a pill every day for an indefinite period of time requires a different mind-set. Reasons for continuing to use oral PrEP as an additional HIV prevention method were very similar to reasons for starting, which included the desire to protect their health and stay HIV-negative. We learned that clients’ reasons for continuing to take oral PrEP had more emphasis of determination and willpower. Current oral PrEP users most often described a sense of motivation and determination to protect their health and remain HIV-negative as their main reasons for continuing to use it. Some talked about intrinsic motivation to “protect myself”, “stay healthy”, “keep my status”, “cover the bases”. Some were motivated by fear or worry, knowing that discontinuing oral PrEP would “put my life at risk” or they “might be infected”.
Oral PrEP is not for everyone. Some clients decided to stop oral PrEP, why?
Even though oral PrEP is a person-controlled prevention method that offered many clients a sense of empowerment, it’s not necessarily the right choice for everyone. And that’s ok. Just as we don’t all like the same food or colors or clothes, different clients have different needs when it comes to HIV prevention. That is exactly why it is so incredibly important that people across the world have choices when preventing HIV. During the research we found that for many clients, side effects were the main reason why clients decided to stop oral PrEP.
Some clients, who decided to continue using oral PrEP did, however, indicate that they were able to overcome the initial side effects, simply by knowing that side effects could happen but that they likely wouldn’t last. This was central to them continuing to use oral PrEP. Knowing what to expect, feeling educated and having honest and accurate communication materials to refer to, instilled a sense of agency and empowerment in relation to their health care. Off course, knowing how to navigate side effects was extremely important, as well. One person told the story of how they took their pill at 11am every morning and then suffered from nausea for a part of the day, so instead of stopping, they simply changed the time they took the pill to 8pm, which really worked for them – no more noticeable nausea.
Unfortunately, another reason some clients decided to stop using oral PrEP was because it is an ARV. The fact that they used an ARV, even though it is for prevention, left them feeling stigmatised, and feeling like people would assume they have HIV. This revelation reminds us all that we live in a world where we all have a part to play to overcome the daily stigma and discrimination that so many people face. HIV is a disease not a verb, it does not define a person’s heart or personality, how much they care for others or how they contribute to society. We are all people living complex lives doing the best that we can with what we have.
We are the generation that will end HIV…
As a world population, we still have a long way to go to be the generation(s) that will end HIV, but incredible strides are being made with HIV prevention technologies such as oral PrEP. Ultimately it’s all about combining the prevention methods we have and affording people choices about how they feel comfortable protecting themselves from possible HIV infection. The research conducted highlighted the importance of health provider care and counselling, realising personal risk factors, support and encouragement from family and friends, and educating communities with accurate and honest communication to ensure all clients who feel at risk of contracting HIV have absolute knowledge and power to choose the prevention methods that will work best for them.
Have more questions? Visit myprep.co.za to answer all your questions and make you the oral PrEP expert. Want even more interaction, visit the South Africa MyPrEP Facebook and Twitter (@myPrEPSouthAfrica) pages and join a community of clients who believe that We Are The Generation That Will End HIV!
Want oral PrEP? Find your closest clinic in South Africa that is providing oral PrEP free of charge here. Want to know if oral PrEP is right for you? Try doing this online journey to find out: PrEP Roadmap.
Other blogs in this series:
ACCESS PrEP blog series: Slaying side effects - it’s all about managing the menace
ACCESS PrEP blog series: Oral PrEP health providers have their say - opinions, thoughts and experiences
ACCESS PrEP blog series: Wrapping it up - PrEP as part of combination prevention
*The OPTIONS consortium is one of five microbicide projects funded by the U.S. Agency for International Development (USAID), in partnership with the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR), working to accelerate and sustain access to oral PrEP.
Disclaimer: Oral PrEP is more than 90% effective at preventing HIV infection for HIV negative clients only. It does not protect against other STIs or unintended pregnancy.