By Alfred Itunga, Technical Communications Officer, LVCT Health
The only way to beat a myth is to give facts.
The talk of HIV/AIDS over the years remains a silent discussion in Kenya mostly due to the stigma and discrimination around it. Most people fear talking about their status, and deaths related to HIV are hardly disclosed.
“When I told them about PrEP, they started telling me to stop telling them that. They started telling me, we’ve heard that if you take this you won’t be able to have a child. And we want to give birth, we are still young. Another one told me that she heard it brought cancer.”
—Zuhura, PrEP champion
This stigma and silence represented major challenges for LVCT Health when they started the demonstration project introducing oral PrEP for HIV prevention. In the context of silence, myths instead of facts filled the vacuum. People in the community reported a number of myths that affected their oral PrEP uptake.
“Some community members used to say that PrEP will make their girls barren or they will never get children, or even that it is involved or associated with the Illuminati.”
—Maryanne Ajwang, clinical nurse at LVCT Health
To counter these myths, LVCT Health engaged with the opinion makers in the community by first educating them on oral PrEP. One group that was very influential were the community health workers and health service providers who were given refresher training that included information on oral PrEP and how it works.
“At first sensitization was very difficult, because people had very many misconceptions. Some said it would make them not conceive, or that it was a drug that makes them more likely to become HIV positive. They had a lot of issues. But when I came in—and they know what I have been doing, and the work I have been doing in the community—they took it. I explained what PrEP was, and what it is all about.”
—Millicent, community health worker
The project participants were also encouraged to raise the different myths during their frequent meetings and these would be addressed with facts. Support groups formed for women in the program and became an important forum for demystify the myths.
Whenever new oral PrEP users heard from those who had enrolled earlier, they felt encouraged and would trust the intervention.
“So over time we have again merged the support groups. For example, if you enrolled in January [you will be paired with] somebody who was enrolled in maybe September, the January person is an early adaptor. The September person would still be grappling with issues of side effects, issues of myths and misconceptions in the community. So we merge these two people, which I think is doable in a real world set up. We would have people who had adopted it [oral PrEP] early. We would have people who'd still be thinking and contemplating [about taking oral PrEP]. If we merge these two people then
the early adopters are able to educate or walk with these people through the journey of adherence and adherence picks
—Matilda Abwok, LVCT health researcher
Others were skeptical because they had not heard oral PrEP advertised through the media. Some with access to internet went a step further and even went to Google to confirm that indeed it was a HIV prevention drug. However, after the launch of oral PrEP in Kenya earlier this year as an HIV prevention drug for those at high risk, and subsequent messaging on radio and television, there was a change of heart by some skeptics.
For effective roll-out of oral PrEP, all the stakeholders and opinion makers in the community have to be informed and assured that indeed oral PrEP is a certified drug in the fight against HIV infection. These conversations have to start in the lowest level of the community and get affirmation from policy makers and government officials in the Ministry of Health.
There’s no question that a simple regimen of a single daily pill can slash HIV infections in people at risk. But although millions of people around the world could benefit, only 200,000 are prescribed PrEP, and 75 percent of them are in the United States. The disparity was the focus of anguished discussions this week at the largest annual US HIV/AIDS conference.
The Center for AIDS Research at Emory University's Rollins School of Public Health produces interactive online maps with visualized data on different aspects of the US HIV epidemic, and its prevention and treatment response, at AIDSVu.org. This set of maps and statistics focuses on PrEP use nationally and by state from 2012-2016.
The International Treatment Preparedness Coalition (ITPC) has released the Key Population Activist Toolkit on PrEP, developed to equip community activists to demand pre-exposure prophylaxis (PrEP). The toolkit includes step by step guidance for activists to develop an advocacy agenda to bring effective PrEP programs to their communities.