“Why are we used as guinea pigs? »Mistrust of transgender women in PrEP research
Trans Peruvian women participating in PrEP studies expressed feelings of mistrust of researchers, wondering who PrEP is really for and stating that PrEP is rarely provided if a study is completed, leaving them feeling like guinea pigs. This is according to qualitative research conducted by Dr. Amaya Perez-Brumer of the University of Toronto and his colleagues, published in the Journal of the International AIDS Society.
Pre-exposure prophylaxis (PrEP) is a very effective biomedical prevention tool for preventing HIV. However, adoption outside of high-income settings – and among groups other than gay men – remains low. In Latin America, barriers such as high cost, difficulties in integrating PrEP services into the health system, and lack of political will are some of the reasons for slow adoption of PrEP.
“We are experiments for other countries to see if we are responding well or not to the pills.”
However, medical mistrust in some communities also contributes to lower absorption levels. It is a lack of confidence and suspicion about the motivations of the medical system. Medical mistrust was once seen as a problem stemming from some communities, but it is increasingly seen as a justified response to systemic inequalities in medicine and research.
Peru has been a major research site in Latin America, with Peruvians making up more than half of men who have sex with trans men and women in the iPrEX hydrologic trial, which demonstrated the effectiveness of PrEP in the first time. Despite several subsequent studies and the approval of PrEP by the Peruvian Food and Drug Administration in 2017, it is still not integrated into the public health system and is primarily available to trans women through participation in research studies. .
Qualitative data was collected before and after a randomized trial of PrEP adherence known as TransPrEP in Lima, Peru. All participants received six months of PrEP, a routine HIV / STI test and two counseling sessions. Participants in the focus group were offered 14 additional community membership workshops.
Among these participants, focus groups and interviews were conducted with 86 adult trans women (men assigned at birth) in 2015 and 2018. Sex work was the most common occupation for all participants, reported by over by 40%.
“There are more and more studies, but we are still getting sick. “
All of the trans women interviewed had participated in a research study or knew someone who had done so. The various studies conducted among Peruvian trans women following the iPrEx trial were described as creating a competitive recruitment climate.
In many cases, these studies have provided access to medical care and HIV prevention that were otherwise difficult to access through the existing health system.
“I found out about this study because I needed an HIV test and a friend told me that the easiest way to get a free test was to go through a study. I did, then I heard about PrEP and wanted to participate. – Luisa, 19, active participant.
However, many trans women expressed that despite all of these studies, trans women still contract HIV and that follow-up care is often poor or non-existent. Participation in research did not translate directly into health benefits for the women interviewed, and they expressed a feeling that they were no longer seen as valuable research participants after contracting HIV.
“Like my friends, I was always contacted to participate in studies, until I found out that I was positive. Since then, no research is interested in me. – Andréa, 36 years old.
“How long have the gringos [White Americans] researched us? Why do we always get sick? What will I do if I get HIV? “ – Maria, 35, screened but never registered.
There were feelings of mistrust regarding both the intentions of the researchers and the ability of PrEP to prevent HIV.
“People are talking and trans women know about iPrEx and other American studies. They often tell me that they don’t believe in the pills, because they have heard from people who have participated in them and who now have HIV. . . so many of us are sick it makes us doubt that research will help. “ – Ruty, 34, host.
Many participants wanted to continue taking PrEP beyond the study period and feared they could not afford it, despite being offered a free temporary transition plan to help them.
“I’ve told them about other studies, they talk to each other about resources they know about, but when can they actually afford to take PrEP outside of research? “ – Ruty, 34, host.
“Trans women have different needs and doctors and researchers don’t listen to us.
Trans women said that while the studies were meant to focus on their needs, many of their concerns – especially those about side effects – were often dismissed by research staff, sometimes in transphobic ways.
“I didn’t want to continue going to the clinic. I know I said I would as part of the study, but the PrEP gave me a headache and a doctor didn’t believe me and kept making me feel wrong… Michi, 25, gave up.
A key concern was how PrEP would affect or interact with hormones. Some participants felt that he was not being treated adequately, which led to trans women dropping out of school.
“I was nervous about taking PrEP with my hormones. When I asked the nurse, she just made me feel bad for taking hormones. Gaby, 24, gave up.
“I was always contacted to participate in studies, until I found out that I was positive. Since then, no research is interested in me.”
The side effects could also negatively impact the ability of trans sex workers to earn a living. By ruling out these side effects, the researchers indicated a disregard for the reality experienced by these trans women. Participants questioned the notion of trans women as a “key population” – often the needs of research studies were prioritized, with little recognition of the needs of women.
“My friend who was in the first PrEP study told me she had horrible diarrhea and stopped taking the pills so she couldn’t work. [as a sex worker]… Because she is trans, the doctors did not believe her, and I know many other trans women who had stomach problems and could not take the medicine any longer. They had to work in order to eat. – Nanci, 26, gave up.
“Why are we all used as guinea pigs, each of us? “
Although PrEP has been tested several times on trans women in Peru, it was not readily available to them outside of research studies. Many participants contrasted the need for the short-term benefits provided by research studies with the lack of lasting health changes that could positively impact their lives.
“What can I tell you? Do I have a problem with my community being treated as an experience? Yes. But we continue to participate and work for these studies because we are seen. . . at least we get HIV care, sometimes we get PrEP, and we even get paid. – Angela, 27, host.
Participants questioned why research on trans women disproportionately benefits the Global North and questioned the continued need for behavioral and biological samples – some of which seemed too invasive for participants and added to the notion of be used as experimental guinea pigs.
“We are experiments for other countries to see whether or not we are responding well to the pills.” – Dani, 22, gave up.
“I will not participate in another study that draws my blood. We don’t trust what they do with our blood. – Participant in the discussion group.
” I did not want [give them a hair sample], I told them no… I felt weird because it was my hair, from there I felt like they were experimenting on me, I’m not going to lie to you. – Dani, 22, gave up.
Some trans women also asked why they were the ones labeled ‘at high risk’:
“It would be ideal to give this [PrEP] to married men. They are the ones who ask us not to use condoms. – Participant in the discussion group.
“Our results show how the perceived and real harms of experimentation are compounded by the problematic reality that there are no long-term strategies to support access to PrEP for trans women once the research is completed. “, conclude the authors. “As a result, trans women do not benefit significantly from the research they are at their core. “
“This document should serve as a call to action to consider mistrust of PrEP as a systemic problem at the institutional and industrial level that recurs and manifests itself through global research on HIV prevention,” they add.