Florent Jouinot, Swiss AIDS Federation

Nothing about us without us

Ms Minalga spoke about the ‘No Data No More’ manifesto and the scoring tool, which are resources for considering, designing and evaluating clinical trials with a view to the meaningful inclusion of transgender people and gender diversity. The scorecard uses 13 indicators to assess the inclusion of transgender people in clinical trials. Evaluation of the scorecard revealed that until now, TGD people have represented less than 1% of HIV prevention studies due to a lack of real participation. On the other hand, the IMPOWER and PURPOSE trials, which have set up a genuine participatory process with these communities, have shown that this is not the case.

The involvement of the populations we wish to reach should take place at the study design stage, so that the protocols take into account the realities of the lives and interests of the members of these groups. The Purpose protocol was therefore revised to meet community expectations. The local communities were then asked to identify the health services they would be most likely to visit in order to participate, and to define the study centres. Finally, commitments were made to communities that if the product was found to be safe and effective, access to it would be guaranteed to all their members beyond the study period. In a session devoted to ‘Political and legal obstacles to HIV-related services’, Brian Minalga added that transgender people donate their blood, their bodies and their time to clinical trials, and that they must be assured that the results of clinical trials are theirs when they participate, in application of the right to benefit from science’.

Nothing for us without us

Whether in health establishments or in mobile actions, the role of peers appears to be essential. It is the peers who know where to go, who know the realities of people's lives and how things should be presented, who are listened to and who can pass on information, answer questions, promote offers and even provide services, then maintain the link to ensure that people adhere to their treatment and follow it up.

Participatory community projects involving trans and non-binary people, sex workers, gay men and other MSM, and people who use substances have the best results in terms of initiating and retaining preventive or therapeutic HIV treatment among these populations, who are often far removed from the health systems and often distrust them.