Rompiendo Barreras Panel Discussion
by Bryan Santos
Serving the community can be challenging, however, one of the most important tools available to us that help us keep our finger on the pulse of the community is their voice. Hearing someone speak may be the easiest thing to do. However, hearing isn’t the same as listening, and actively listening can impact your work and help guide your mission directives. Pridelines hosts Listening sessions to be intentional about our programming and to meet the needs of the community. Recently we held three listening sessions for people living with HIV or who are impacted by a loved one who has HIV. They had a diverse group of participants that ranged from people of color to people within the Latin community. Both communities experienced disparities when it comes to medical care and engagement within the community as it pertains to issues surrounding HIV.
During one of the listening sessions, we spoke briefly about things that are directly impacting the community and how they manage their status and care. Common themes that were mentioned were issues regarding housing, issues with staying engaged in care, privacy concerns, affordability, and accessibility of treatment. Many of these issues have been voiced before but some of the interesting feedback pertained particularly to the privacy and anonymity of the client as it pertains to staying engaged. Participants felt that the stigma of being HIV positive was only exacerbated by having to go to a branded clinic that clearly states HIV within the service. Many of them agreed it was uncomfortable for them to sit and wait to be seen in a lobby with other people around them. They didn’t want to be identified with their diagnosis and it was a deterrent to remaining engaged.
Some participants expressed a desire to have a generalized clinic that serviced more than just HIV patients to allow them their anonymity. Furthermore, many of them stated the regimen was also difficult to adhere to at times. Interestingly enough one of the guest speakers had news about a new medication that was injectable and did not need to be taken daily. The idea was that it would support those who had difficulty with adherence. The news was well received and sparked interesting conversations on how the medication would work and how accessible it would be. Leading to one of the more important issues accessibility within the community and a destigmatization of those on treatment.
“U equals U” has been talked about previously but many of the participants felt that although they were showing up as undetectable the general stigma remained. One participant in the Latin group stated they had been treated poorly by lesser educated support staff at facilities as it pertained to being trans and HIV positive. They expressed a sense of dread when they knew they had an appointment because they didn’t want to feel the mistreatment again. They gave an example of not wanting to be touched and the use of two pairs of gloves. Instances like this are imperative to discuss because it shows the amount of work we have to do to educate providers.
All of these concerns are valid and only go to speak to the importance of having these sessions. They allow health care workers and patients to express concerns openly and freely to improve the health care system, reduce barriers, and eliminate stigmatization. All of these sessions provided great opportunities for growth and much of what Pridelines learned can be used in conjunction with how we link our guests to care. It will also be used to improve our educational content so we can help providers create safe and affirming spaces for those suffering from HIV that fall under the LGBTQ umbrella.