Early Insights from PrEP Demo Projects

Lessons from the frontlines of PrEP demonstration projects and implementation in Kenya, South Africa and Zimbabwe

We had the wonderful opportunity to catch-up with some of the researchers and healthcare providers who are leading the charge on delivery of oral PrEP. They shared with us some of their biggest insights, surprises and challenges.

Contributed by Neeraja Bhavaraju and Daniela Uribe from FSG, a member of the OPTIONS Consortium.

1. Encouraging PrEP uptake will necessitate patience and creativity

While demonstration projects received high interest and willingness to take PrEP initially, this interest has not translated into high uptake once PrEP is available. Demonstration projects have embraced the need to be patient as a new portfolio of HIV prevention products is introduced, highlighting that investments in demand generation will be critical to successful PrEP rollout.

Dr. Wanjiru Mukoma “We got very high levels of willingness to take PrEP, around 80 percent... But the central message here is that despite the very high willingness to take PrEP, there was no 'mad rush' across the population to take PrEP... We have to have very innovative strategies when working with MSM, FSW and young women to increase uptake, like working with peer educators, and working with the community... This is important for scale up... yes there is willingness, but it’s not just going to happen automatically."

—Dr. Wanjiru Mukoma, Executive Director, LVCT Health, IPCP Demonstration Project, Kenya

“We initially had extremely high interest in these interventions [early treatment and PrEP] with women coming to the clinics when the project first started, but over time this tailed off. So we did a lot of repeat messaging and also updating messaging as we went along with the continuous feedback from potential users about what they were afraid of, rumors around side effects, concerns of stigma, issues of having time or money to come to the clinics, and we tried to address those as best as we could…We have to moderate our expectations around how long it takes people to be comfortable with new things. We have to expect that and be patient with the fact that it will take time to get where we want to be.”

—Robyn Eakle, Senior Researcher at Wits RHI, South Africa

2. One size does not fit all

Demonstration projects have highlighted a need to explore various forms of messaging, ways of supporting adherence, and delivery channels in which to offer PrEP.

“We need to think of a range of service delivery channels and communication messages:

Dr. Melly Mugo- Through drop-in centers that are set up for key populations, such as sex workers and men who have sex with men
- Within family planning and sexual reproductive health services for women that may not self-identify as at risk for HIV
- Through HIV testing centers, and as we continue to integrate HIV testing services into public health facilities (rather than just stand alone testing centers) we will need to integrate PrEP
- Community health workers. We will need clear communication channels between community [leaders], health workers and clients to avoid PrEP being seen in a bad light.”

—Dr. Nelly Mugo, University of Nairobi, Kenya

“[For demand generation] it was starting with a particular set of messages and trying that out, seeing how that worked, coming back to the table and revising our thoughts, and going back and trying out new things...

[For supporting adherence] we had things in place in the clinic for when the women came to pick up refills, and for clinic visits, for our staff to have conversations. But we tried to tailor it fairly individually because everyone has a set of needs and things that will work for them.

—Robyn Eakle, Senior Researcher at Wits RHI, South Africa

3. There is an opportunity to frame PrEP as a positive, empowering choice

Whether it is supporting a family, gaining greater control over one’s health, or a desire for greater intimacy and less fear, PrEP can respond to a user’s most valued needs and desires.

Robyn Eakle “The women we are seeing coming to take PrEP as well as early treatment are women who have some motivation in their lives to want to be healthy. I think it’s different for everyone... many of the women have families that they are supporting, children, most of them are mothers, or they have sisters, brothers, or parents that they are supporting either where they are living now or in a village or another where they are sending money back. So this work that they do is dependent on whether they can continue doing it, they have to be healthy to be able to work.”

—Robyn Eakle, Senior Researcher at Wits RHI, South Africa

Dr. Jared Baeten “One of the things that I’ve been most excited about is this last year has been all of the discussion from many settings about how PrEP responds to people’s needs and their desires: desires for intimacy and reduced anxiety and control over their own lives, and how we can capitalize on that. There are a lot of issues around PrEP that are context specific, a lot that are universal, and a lot that respond to things that are important to us as human beings.”

—Dr. Jared Baeten, University of Washington, POWER, South Africa and Kenya

4. PrEP is personal, but community is key

While PrEP users may decide to use PrEP independently, the reality is that engaging communities and their opinion leaders has proven an essential part of demand generation.

Jane Karonge “We went back to the community and we got to know that the men in the community would not allow the women to take the [PrEP] pills. These men are not necessarily their sexual partners, they’re just men in the community, they are gatekeepers. So we went back and we started having meetings with men. We had town hall meetings, focus group discussions, we engaged them one-on-one. Some of the men became PrEP champions and began mobilizing girls and young women to start taking PrEP and we saw uptake go from 0 to 65 percent.”

—Jane Karonge, LVCT Health, IPCP Project, Kenya

“While PrEP may be an individual, and maybe an inter-personal decision, it’s also community decision. In one of our sites the young men in the community came to us wanting to know, ‘what are you giving to our young women and why,’ and we had to stop recruitment for a while and just engage them.”

—Dr. Wanjiru Mukoma, Executive Director, LVCT Health, IPCP Project, Kenya

5. Who delivers PrEP may be as important as where

Stigma from health care workers is one of the biggest sources of concern among those planning for PrEP rollout as well as among potential users. Ensuring providers are properly trained to deliver PrEP to different populations is a priority for ensuring uptake and effective use.

Megan Dunbar “[In stakeholder meetings] young women talked a lot about wanting youth-friendly services... they [providers] don’t have to be literally young, but they have to be young at heart or they have to be able to work with them in a very non-judgmental way. And then maybe you build in things like peer educators and peer supporters so that you have the younger element doing the social support and providers need to be trained and sensitized and have a passion for working with young people.”

—Megan Dunbar, Vice President of Research and Social Policy, Pangaea Global AIDS, Zimbabwe

6. Unpredictability calls for coordination

PrEP rollout timelines have been at times unpredictable and often dynamic: dates change, priorities evolve and quick decisions are needed. Ensuring coordination among the various players involved in PrEP planning and implementation is key to driving progress amidst ambiguity.

Dr. Saiqa Mullick “There have been a number of valuable lessons that we have learned and one of them is the unpredictability of the timeline. Having the technical working group (TWG) as a coordination mechanism able to draw on various partners with different expertise in order to support the National Department of Health (NDOH) to quickly rollout PrEP to sex workers was a key lesson learned [in South Africa]. The other lesson learned is the need to be flexible and adaptable to needs in country. Sometimes as much as we plan things we have to respond very quickly and then learn as we do. Another key lesson has been understanding what expertise different partners bring to the table and to really coordinate and allow different parts to bring their expertise so we can catalyze implementation but also catalyze learning.”

—Dr. Saiqa Mullick, Director of Implementation Science Wits RHI, South Africa