Aid groups grapple with stigmatization in HIV prophylaxis roll-out

A community health worker draws blood from a patient as part of HIV testing process in Kenya. Photo by: Millennium Promise / CC BY-NC-ND

When Dr. Wanjiru Mukoma began educating at-risk communities about a new preventative HIV treatment in Kenya, interest appeared high. Her company, LVCT Health, reached out to hundreds of members of at-risk communities, including sex workers and men who have sex with men (MSM). The two groups are criminalized in Kenya, but they are also “key populations” in global health parlance — communities where HIV spreads at a higher rate than in the general population, in part because this criminalization can make it difficult to access services.

Mukoma’s team also reached out to young women. In sub-Saharan Africa, adolescent girls and young women account for 71 percent of all new infections among young people.

But when LVCT Health began its demonstration study to test the new treatment in three Kenyan communities in November last year, many of the same people who appeared enthusiastic didn’t take part. By the end of six months, 141 MSM, 154 sex workers and 76 young women had enrolled — well below the 2,100 people researchers hoped to sign up before the study ends next year.

Mukoma suspected multiple factors pushed the numbers down, including low awareness both among patients and medical professionals. “But underlying all of that is stigma,” she said.

A year later, it is Mukoma’s job to figure out how to combat that stigma to make one of the most promising approaches to HIV prevention in years actually work in Kenya. With policymakers across sub-Saharan Africa watching over her shoulder, her work could have a significant impact on the course of the epidemic in the region.

Pre-exposure prophylaxis, or PrEP, offers antiretroviral to uninfected people in high-risk communities. Initially designed to treat people who are already infected, ARVs dramatically reduce the risk of transmitting the virus. The U.S. Centers for Disease Control and Prevention reports PrEP lowers the risk of sexual transmission of HIV by more than 90 percent when users stick to the regimen. It’s so promising that in 2015 the World Health Organization recommended it be offered to anyone at substantial risk of infection.

PrEP’s success in sub-Saharan Africa — the region with the highest burden of HIV — will hinge more on the social than the scientific, though. Researchers and advocates will have to strike a balance in how they market and roll out PrEP. They have to ensure that it reaches stigmatized populations with high HIV transmission rates, such as MSM and sex workers.

Meanwhile, they must ensure it is not perceived as exclusively a treatment for marginalized groups, which will lower its appeal both within those communities but also to other people who could benefit from it.

Along with South Africa, which officially rolled out PrEP for sex workers this year, Kenya is one of the earliest adopters of PrEP in sub-Saharan Africa.

Health officials in Nairobi included the regimen in new 2016 prevention guidelines with an eye toward a countrywide rollout in the coming years. Mukoma, whose company collaborates regularly with the government, is one of the people tasked with figuring out how to make sure that expansion is as effective as possible.

A diverse epidemic

In Kenya, a country with the fourth-largest epidemic in the world, PrEP’s success will hinge of reaching out to a diverse group of people, including criminalized communities. HIV rates among MSM are an estimated 18.2 percent, nearly three times the 5.9 prevalence in the general population. The rate among sex workers is nearly 30 percent. Public health officials agree that adoption of standard prevention techniques, especially condom use, are still too low in both communities.

Mukoma’s team is faced with the complex calculus of branding PrEP in a way that addresses the same question that has undermined other HIV prevention strategies among MSM and sex workers: how to convince them that their participation will not make them more susceptible to discrimination — or worse.

“There is stigma around HIV,” she said, “but also stigma around sexual behavior. Stigma, not just whether you’re a key population, but young women get stigmatized for having sex.”

Meanwhile, if PrEP is viewed primarily as an intervention for key populations, it could curb its reach. Young girls, for instance, might reject the strategy if they are worried they will be perceived as sex workers if they take it. And “while MSM and female sex workers have very high risk and prevalence rates,” she said, “our epidemic is a young woman’s epidemic.”

Taboos on social behaviors can pose barriers to patients seeking even the most basic services, said Amaka Enemo, national coordinator for the Nigeria Sex Workers Association. Although sex work is not criminalized to the same degree in Nigeria as it is in Kenya and much of the rest of sub-Saharan Africa, she said stigma alone can prevent people from seeking health services.

She recently conducted a project educating women in three of Nigeria’s states about the intervention, even though the government has not yet approved its introduction. “What they asked every day is when are we going to see PrEP,” she said. “Support was so awesome. They just want to access PrEP immediately.”

Community engagement

In Kenya, Mukoma’s LVCT team has tried several strategies to encourage participation, including organizing community meetings in which patients could discuss problems they were facing, including discrimination, and where officials could dispel myths about PrEP.

Another strategy has been to target outreach specifically to each group of people that could benefit from PrEP. That includes training “PrEP champions” — people from within the communities who can identify peers who might benefit from the intervention. Champions are encouraged to set up private meetings in which they lay out the benefits of PrEP. It is time consuming, but Mukoma said it is also one of the most effective methods for addressing stigma.

Kenya is fortunate, she said, that policymakers are willing to push effective interventions, despite the legal obstacles health ministry wants health providers to make PrEP users feel comfortable enough to return for regular refills.

“The policy environment, as far as HIV is concerned, is quite progressive,” she said. “It enables us as implementers to be able to do very many innovative things in the context of a constrained legal environment.”

Nduku Kilonzo, the director of Kenya’s National AIDS Council, told Devex the results from Mukoma’s and at least three other ongoing demonstration projects “will give us answers” as to how PrEP is rolled out to the entire country over the coming years. The impact of their results will stretch far beyond Kenya.

“Countries who are a little bit further behind South Africa and Kenya are really looking to South Africa and Kenya to answer some questions,” said Mitchell Warren, the executive director of AVAC, which advocates for prevention in bid to end the AIDS epidemic. “We can give you mathematical models, we can give you projections, but people want to have real lived experiences about how to promote PrEP.”

Things are looking up in Kenya. It’s now been a year since Mukoma’s demonstration study started and the number of people who have enrolled has more than doubled over the previous six months. There are now 384 MSM, 461 sex workers and 367 young women who have signed up. She credits the uptick, at least in part, to their targeted intervention strategies.

Uptake, Mukoma said, is finally starting to match interest.

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About the author

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    Andrew Green

    Andrew Green is a Devex Correspondent based in Berlin. His coverage focuses primarily on health and human rights and he has previously worked as Voice of America's South Sudan bureau chief and the Center for Public Integrity's web editor.