By Alfred Itunga, Technical Communications Officer, LVCT Health
Within communities and across the general public, oral PrEP, which is for prevention, is often confused with anti-retroviral drugs (ARV’s) used for treatment. For participants in LVCT Health’s demonstration project, the stigma associated with ARVs made it difficult to disclose they were using oral PrEP.
“You know, people did not know about PrEP before. Now they are a bit more aware, but before, when they saw that bottle they would automatically assume that it is ARV’s. So I used to hide them, I did not want it to be too obvious, so sometimes I was obliged to put in in a different bag when going out, as I did not want to carry the container.”
These anxieties, in turn, affected the implementation of the project and its aim to protect those at risk of HIV exposure from becoming infected.
“Actually one [participant] decided to self-discontinue after the husband who was working in a different town decided to move back home.”
—Maryanne Ajwang, clinical nurse at LVCT Health
Women using oral PrEP through the project had to conceal the drugs from their spouses, friends and parents, this in turn affected adherence in their daily pill taking as prescribed. While some, who understood their risk, came up with different strategies to continue their daily pill taking, others decided to stop taking the pill, exposing them to HIV infection.
LVCT Health supported users who felt at high risk and needed to continue taking oral PrEP every day. Participants had to select the best time that they would discreetly take their daily pill, this time had to be when they felt most safe and free to do it.
“When I got home, I really thought about it. The drugs were large and if my friend was to get me with them they would think they are ARVs and if I explained they wouldn’t believe. I had to close my door every time I took them because I did not want anyone to see me taking them. To date I still do it in secret, I can’t even tell my neighbor because I feel they might laugh at me.”
There are those who set reminder alarms on their phones for good adherence, while others opted to take the drug with a routine activity during the day, like taking the pill in the morning while taking their breakfast.
For those expecting to be away from home a lot, staff asked them to carry their drugs with them. LVCT Health also referred those who were travelling to different facilities where they would get their refill when they ran out of pills.
The rattling noise from the drug container was a nuisance to most of the participants and they felt this exposed them to more stigma as they went along their daily activities. To address this, they would remove the drug from the plastic container.
“Sometimes I am traveling..., some weekends I was not taking my drugs because I did not like carrying it around with me because it makes noise and people just get suspicious and say this one has the virus”
Through support group discussions, the participants devised an innovation to address this problem. Staff provided cotton wool to stuff in the pill bottles and that helped address the rattling challenge and gave women confidence when they had to carry the drugs around.
LVCT Health also supported opportunities for women to disclose they were taking oral PrEP by inviting spouses or parents of the young women to meet with service providers. During these sessions, service providers explained why oral PrEP is important and how it protects individuals and the community from new HIV infections. Results were mixed. Some instances bore positive results and in other cases husbands or family members remained opposed to oral PrEP. Overall, project staff report that the investment in these sessions helped to broaden awareness and understanding of oral PrEP.
Stigma remains one of the biggest challenges in ending new HIV infections and it was a major hurdle for LVCT Health’s PrEP demonstration project. Although oral PrEP has been confirmed as one of the best ways to prevent HIV for those at high risk, it is important for communities and service providers to support women who take oral PrEP, and help them establish habits that fit into their daily lives, shield them from stigma, and address the many challenges that come with HIV prevention.
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.