Voice of the customer

Fighting HIV stigma with mobile technology

Oct 29, 2017

Kenya is making inroads in the fight against HIV. Efforts over the years ranging from increased HIV awareness, the establishment of testing centres, increased distribution of ARVs and progress in HIV research  have all contributed to combating the virus. Unfortunately, stigma surrounding the virus still exists and is stifling this progress, ultimately impacting  efforts to end HIV entirely.

HIV Stigma is deeply rooted in fear and misinformation on how the virus is spread. People living with HIV have often been labelled as immoral and promiscuous because sex, one of the methods of transmission, still remains a taboo subject among many.

According to Tina Schuh, a former Research Coordinator at the University of Washington, women aged 15 to 24 face a higher risk of HIV infection. She added that women are particularly at a higher risk owing to their biological makeup and a patriarchal culture where men make the decisions concerning contraception. Overall, this age group is more prone to peer pressure and may engage in drug use and risky sexual behaviour.

To better understand the impact stigma has on people living with HIV, we had a conversation with 552 Kenyan youth aged 18-24. Up to 89% of them feel that HIV positive people are ashamed to declare their status mainly for fear of experiencing stigma. The irony is that stigma is the main reason why people are afraid to test, eventually making people more vulnerable to HIV.

Fortunately, self-testing is empowering vulnerable groups by assuring them of confidentiality. Tina worked with mSurvey on PrIYA (Prep Implementation for young women & adolescents) a program initiated by the University of Washington and funded by the DREAMS Innovation Challenge. The team at PrIYA is currently working with mSurvey to get feedback from women who were given self-testing kits for themselves and their partners.

The effects of stigma go beyond just testing, 41% of the youth we spoke to know someone who was discriminated against for being HIV positive. The largest form of discrimination their friends experienced was from the workplace. “When I was applying for a job, I found that if you are infected you don’t get the job, ” one person told mSurvey. “People at work did not  want to relate with them,” added another.

Still, there is evidence that the tides of stigma are changing.  92% of the Kenyans we spoke with believed that it is safe to work with HIV positive people. Aimee Leidich, mSurvey’s Head of Research Design & Strategy, observed a similar positive change in her previous HIV research.  “More and more people are well informed about the virus, dissipating some of the fears that lead to stigma.” Aimee noted. “Seeing someone you know and care about living and thriving with HIV can have a very powerful effect on someone’s perception of the virus. People see that it’s no longer a death sentence but rather something that can be treated over a lifetime with support from family and friends,” she added.

As more and more people are properly treated for HIV, their viral load decreases which in turn lowers the risk of transmitting the virus to others, stopping HIV in its tracks.  Health eNav, a research study at the San Francisco Department of Public Health, is using mSurvey to help people living with HIV better engage in their HIV care by providing timely and essential treatment  and support services with the ultimate goal of zero new cases of HIV in the City of San Francisco. The knowledge gained from this experiment will help to inform similar efforts in other spaces, ideally making the end of HIV a reality