Kenya passed a major milestone in the fight against HIV on May 4, 2017 when it launched a nation-wide initiative to bring oral PrEP (pre-exposure prophylaxis), antiretroviral drugs for preventing HIV, to the people who need it. The hope that oral PrEP will help defeat HIV comes after important clinical studies, which showed the safety of the drugs and their ability to prevent infectioln if taken correctly and consistently. But what works in the lab has to work in the real world too. A number of demonstration projects, aiming to answer the outstanding questions of how best to deliver oral PrEP, started offering PrEP before the launch of a national scale-up. The larger rollout will look to those projects to learn what worked well and what didn’t, and design a successful program. LVCT Health led a demonstration project called Introducing PrEP into HIV Combination, or IPCP, at multiples sites.

The three-year IPCP project focused on reaching populations at risk of being exposed to HIV in counties where HIV rates are high. Young women, female sex workers and men who have sex with men in Kisumu, Homa Bay and Nairobi counties of Kenya were enrolled in programs that offered daily oral PrEP. Program implementers answered their questions, counseled them through the effort to adhere to a daily regime, and collected evidence that would inform others about how to deliver PrEP as part of an HIV combination prevention package in Kenya.

A team made up of LVCT Health staff and AVAC staff recently visited the implementing sites to gather stories and collect lessons learnt as part of the OPTIONS project. We interviewed providers, adherence counselors and people using PrEP who shared their journeys of PrEP uptake and adherence.

People using PrEP pointed to support groups as one of the most important resources they depend on to help them maintain good adherence. The groups consist of 10-15 people who are self-led and meet regularly to share their experiences and challenges in using PrEP. I had an opportunity to attend a female sex worker support group in Kisumu and witnessed what happens during the meetings.

Monica, a PrEP peer leader, started the meeting by welcoming twelve others attending this support group. After each participant shared something about themselves, the group took up the subject of adherence while a note taker kept track of the discussion.

Lucy was among the first speakers. She has been able to keep up with a daily dose of PrEP, something many others struggle with. She said that she has been a female sex worker for 5 years and has been taking PrEP for the last year, catching the attention of those who have been using PrEP for a shorter period. Lucy continued to share her experience of using PrEP in the first two weeks which she confessed were the most challenging.

“I would feel nauseated, headaches and stomachaches, but after visiting the clinic and talking to the nurse, I was informed that these feelings would stop as soon as the body got used to the drugs and this surely did happen, after two weeks these side effects disappeared.”

Lucy said that during that time she almost gave up on PrEP taking, but what kept her going was the fact that she had lost her mother to HIV and could not imagine getting infected. She wants to remain healthy and HIV negative for her daughter. She also said that meeting with her peers during the support groups and hearing the same challenges she experienced made her grow stronger.

Her story generated some discussion as members loosened up and began to share their own experiences. “One time I forgot to take my pill since I was late from visiting a client. The following day I took two pills to compensate” one person said. This raised an argument as some thought it is not right while others said it was.

The service provider was at hand and advised that it is wrong to take two pills at a go and said that it’s too big of a dose. This reaffirmed those who felt it was wrong and users were advised that if for any reason they forgot to take their daily dose, they should continue with their dosage the following day.

I can see the support group meetings not only help people feel supported but also gives them an opportunity to get information and professional guidance on the challenges they face. Considering PrEP is a new prevention option in Kenya and the significant stigma associated with HIV in Kenya, the support groups give assurance to people and a platform to identify solutions to some of the challenges that they face.

It shouldn’t surprise anyone familiar with the HIV response that support groups have emerged as an important resource for a successful PrEP program. For years now, support groups have been pivotal for those on treatment, helping people living with HIV to adhere to the demanding regime of antiretroviral treatment. Providing a protected space for peers to discuss their challenges, such as managing medication or the stigma associated with HIV, is now a time-tested model.

At these LVCT demonstration sites, providers say the support groups have been invaluable. Maryanne, an LVCT Health PrEP service provider from Homa Bay, says at first only a few expressed an interest in the support groups. But those few kept coming and they kept telling others how much it helped. The support group got larger as young women confronted obstacles to adherence, which they wanted to overcome.

“One of the challenges that the users had was the rattling of the pills in the bottles, which made them feel uncomfortable while traveling with the drugs. This affected adherence. They would not carry the drugs when they travelled,” shared Maryanne.

Together they devised a way to keep the pills discrete. Maryanne began supplying cotton to stuff in the pill bottle. No more rattling. No more leaving the pills behind.

Whether it’s managing side effects, stigma or adherence, these group discussions offer personal, consistent support—something the IPCP programs developed in a number of ways. In the coming weeks and months, OPTIONS will be sharing a series of lessons learned from our visits to the LVCT demonstration projects. As a whole, these lessons will touch on a range of issues, but several will underscore what these support groups show. The challenges to good PrEP adherence are both individual and societal, both practical and complex. Enduring solutions often involved ready access to a trusted person who can offer guidance when the going is hard until the way gets clear again.

Contributed by Alfred Itunga, Technical Communications Officer at LVCT Health.