On July 4, Kenyan civil society, including groups working on the frontlines of HIV prevention and treatment, called a meeting with the leaders and implementers of oral pre-exposure prophylaxis (PrEP) activities in the country. The meeting’s purpose was to have a frank discussion about the role of community support in the national PrEP program, and touch on progress with HIV self-testing implementation. Some of the civil society groups, like ISHTAR-MSM and Bar Hostess Empowerment Support Programme (BHESP), are also involved in implementation—they’ve partnered with Jilinde, a national-scale PrEP rollout project, or LVCT to help identify potential PrEP users, spread messages and deliver services.

Other CSOs in the room, such as Survivors, an NGO of female sex workers in Busia, Western Kenya, and the Kenya Legal & Ethical Issues Network on HIV and AIDS, aren’t delivering services, but, like BHESP and ISHTAR, represent advocates, activists and potential PrEP users. All were united by a common goal of shining a spotlight on community and civil society engagement as a critical link to successful PrEP rollout in the country.

In the months leading up to the May 4 launch of Kenya’s national program, many civil society groups gave inputs to the national PrEP technical working group (TWG), convened by the National AIDS & STI Control Program (NASCOP). This work is ongoing, with civil society represented on the various rollout committees.

But being invited to the table is not the same as setting the table—and at the July 4 meeting, the organizers structured a packed agenda in order to learn about progress and plans, as well as to express their views on priority issues.

Rosemary Mburu, Executive Director of WACI Health, and Nelson Otuoma, Executive Director of the National Empowerment Network of People living with HIV/AIDS in Kenya (NEPHAK), co-facilitated the meeting.

Mburu noted that many issues remain to be worked out if PrEP is to achieve its true potential in the country: communities need to be continuously informed and engaged; sustainable financing that includes domestic resources has to be secured; and county-level plans have to be designed, with appropriate material for use at the community level.

Otuoma, who recently won the inaugural Maisha Conference Award for his work in community advocacy, reminded everyone of PrEP’s massive potential in Kenya, but only “if we can overcome barriers like stigma.”

“Just like ARVs changed the face of HIV from a killer disease to a chronic condition, PrEP can help the country move further and faster along the HIV prevention roadmap,” he said.

Jointly presenting the viewpoint of young women to the convening, 24-year-olds Anastacia Kendi and Grace Kamau, part of the youth-serving group Sauti Skika, welcomed the launch of PrEP, calling it “an empowering tool to women and girls.”

“I hope there will be more investments in ensuring the interventions are made to work for women and girls’ needs alongside the needs of boys and men.”

Three established PrEP implementation projects in Kenya—the Partners Scale Up Project; Introducing PrEP in Combination Prevention (IPCP); and Bridge to Scale (also known as Jilinde, Kiswahili for “protect yourself”)—shared updates and lessons learned.

Speakers from these projects reported excitement about PrEP as a new prevention method in the country. Yet they said that there were obstacles when it comes to actual use. While there are reports of high demand in some communities and programs, there are also places where the number of people signing up to use PrEP is lower than the expected enrollment.

Adherence (taking the pill daily as prescribed) stands out as challenge; and many people who are using PrEP have been “lost to follow-up”, public-health lingo for a participant who starts taking a medication such as PrEP or antiretroviral treatment (for people living with HIV) but along the way stops returning for their monthly refill visits without informing their clinic.

In all updates, community engagement stood out as a critical part of the solution.

Dr Elizabeth Irungu, the director of the Partners Scale Up Project in Thika and Kisumu in central and western Kenya respectively, said the project team is finding broad acceptance for PrEP among heterosexual, HIV-serodiscordant couples.

“We now have something to give the HIV-negative person,” she stated.

Partners dispenses PrEP from Comprehensive Care Centres (CCCs), clinics that are primarily involved with HIV prevention and treatment.

“We think that by adding PrEP for HIV prevention for HIV-negative people, there may be a reduction of the stigma associated with going to CCCs, as both positive and negative people can get services there. However, there is a lot of work to be done to reduce stigma around HIV, and around going to a CCC,” said Irungu.

By June 2017 the project, funded by the Bill & Melinda Gates Foundation, had enrolled 290 couples. They hope to reach 4,800 couples by 2019—200 in each of 24 centers.

Jhpiego’s Jilinde project, also funded by the Gates Foundation, is working among men who have sex with men, sex workers and adolescent girls and young women at high risk for HIV.

Tom Marwa, Senior Technical Advisor at Jhpiego, informed the convening that 2,300 users were enrolled between February and June 2017 through 17 Jilinde PrEP delivery centres in 10 counties of Kenya. The program is on track to reach 20,000 PrEP users by 2020, and its experiences will contribute important lessons to other African countries planning to introduce PrEP, he added.

Introducing PrEP in Combination Prevention (IPCP) consortium, led by LVCT Health, is implementing PrEP among the same populations as Jilinde. The project started before the national launch of PrEP and was designed to test whether PrEP could be delivered to these populations from standard healthcare facilities.

Dr Michael Kiragu, who leads IPCP, said he was heartened to see good support of PrEP during the formative studies phase of the project. Yet out of a target of 2100, only 1626 PrEP users (77 percent of target) were enrolled and retained into the program. He said that this was a sign that there were barriers to PrEP uptake and use.

The project team has learned that an individual’s community has a huge influence on their decision-making, and stigma remains a barrier to PrEP uptake and adherence, he noted.

“PrEP users at IPCP clinics complain about the rattling of pills in the bottle, the color of the pill (blue), and about disapproval from their husbands, boyfriends or parents.” To address some of these challenges clinics have started giving out cotton balls to mute the rattling of pills, holding community dialogues on PrEP with men, and offering couples counseling. In addition, people using PrEP have pointed to support groups as one of the most important resources they depend on to help them maintain good adherence.

Dr Sarah Masyuko, NASCOP’s HIV testing and PrEP Manager, gave a keynote at the convening.

The first phase of communications and advocacy on PrEP had been hugely successful, she noted, with widespread media and social media engagement reaching all corners of the country. On the sustainability question raised by civil society, Dr Masyuko said the Ministry of Health is holding consultations with PEPFAR, The Global Fund, and private companies in Kenya to secure long-term financing for PrEP.

“PrEP rollout is unlike any other,” she noted, citing difficulties with gathering reliable data for an intervention that people can get on and off at will. She said the government is looking into an electronic system with unique identifiers that will help better track users nationwide. She challenged implementing partners to do even more to reach communities with accurate messages on PrEP and HIV self-testing, and that dispel rumours and misconceptions that stand in the way of uptake among eligble persons, defined in the Kenya national guidelines as anyone at substantial ongoing risk of HIV infection.

This background information provided the platform for a robust discussion of what’s working—and what else is needed. Civil society representatives were clear that PrEP messages needed to be highly tailored and that organizations with different positions in the communities needed to have the right infomation to deliver through trusted channels. This could mean fine-tuned messages that go beyond the category of “adolescent girl or young woman,” “sex worker,” or “MSM” to consider other life circumstances—how openly a person is living with his or her identity, their community support, their influencers, et cetera. Some of this work is underway; much more will come from civil society groups leading work on the ground and feeding back on what works and what doesn’t.

From the convening, Peter Mogere, lead pharmacist at the Partners Scale Up Project and 2017 AVAC Fellow, presented a 9-point list of ‘Civil Society Asks’ to the National Technical Working Group (TWG) on PrEP, on 7 July. Along with allocating domestic resources for PrEP, the asks focus on community engagement at the grassroots level; health care provider training; and combating human rights violations, stigma and discrimination.

Mogere said the TWG was highly receptive to the civil society asks; “The TWG Chair said she was looking forward to involving the civil society in reaching out to all communities that would benefit from PrEP. She noted that civil society works on the ground in all regions of the country, including rural areas, and reaching all people at risk of HIV infection is high on the priorities of the national PrEP program.”

As a next step, the advocates are planning to stay connected and to develop and advance priorities that they can pursue through meetings where civil society sets the agenda. The history of the epidemic tells us this is how things change.

AVAC provided technical and financial support for the convening, which was co-hosted by AVAC partners WACI Health and the National Empowerment Network of People living with HIV/AIDS in Kenya (NEPHAK), in collaboration civil society organizations ISHTAR-MSM; Survivors; International Network of religious leaders living with or personally affected by HIV (INERELA+)-Kenya; National Organization of Peer Educators (NOPE); I Choose Life; Health Gap; Bar Hostess and Empowerment Programme (BHESP); Keeping Alive Societies Hope (KASH); Persons Marginalized and Aggrieved (PEMA); Kenya Legal and Ethical Issues Network on HIV and AIDS (KELIN); and Sauti Skika, a project affiliated with NEPHAK.

Contributed by Alfred Itunga, Technical Communications Officer at LVCT Health. This post first appeared on PrEPWatch.org.

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 infection 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.