“Nothing is developed for us, without us,” Arianna Lint said as she handed the Centers for Disease Control and Prevention (CDC) director, Robert Redfield, a copy of Positively Trans’ new needs assessment of transgender and gender nonconforming people living with HIV. Lint was joined by a large group of people living with HIV on stage at the United States Conference on AIDS in Washington, D.C., earlier this month to disrupt the opening plenary with Redfield and create a dialogue where there wasn’t one.
Redfield was discussing the role the CDC will play in the U.S. Department for Health and Human Services’ plan for addressing the AIDS epidemic, Ending the HIV Epidemic: A Plan for America. The CDC has identified 57 geographic areas “where HIV transmission occurs most frequently,” and will work with health agencies, local and state governments, communities, and people living with HIV to “infuse those areas with additional resources, technology, and expertise to expand HIV prevention and treatment activities.” This plan explicitly relies on building partnerships and therefore requires trust. That is why we, people living with HIV, responded: Nothing is developed for us, without us.
The CDC and other public health groups have historically ignored the knowledge and guidance provided by trans people living with HIV, and their prevention and treatment campaigns have evolved slowly as a result of their disconnect from the lived experiences of trans people living with HIV. Their website even acknowledges that “few health care providers receive proper training or are knowledgeable about transgender health issues and their unique needs. This can lead to limited health care access and negative health care encounters.”
Trans advocates have forged our own paths and led efforts where there were none. If the CDC is truly going to work with communities, it needs to meet our experts on equal ground and acknowledge the divide that it has been guilty of perpetuating. The agency can start by following the lead of Transgender Law Center’s Positively Trans project, which has created a blueprint for the future of constituent-led research.
Lint is the founder of the South Florida-based Arianna’s Center, which works to engage and empower the trans community there, and a national advisory board member of Positively Trans, as am I. Positively Trans mobilizes and promotes the resilience of trans people most impacted by or living with HIV and AIDS—particularly trans women of color—through research, policy advocacy, legal advocacy, and leadership-strengthening. The needs assessment—first conducted in 2015, and then again in 2018—represents a model of data-driven advocacy that we believe is the key to reducing HIV risk and increasing access to care and other resources for trans people living with HIV.
Although the CDC notes that trans women have a greater chance of getting HIV than others, without raw data, it is difficult to make an argument to funders about the need for trans-specific HIV advocacy. Efforts to collect data on trans people run into historic problems that the CDC has had around the LGBTQ community. The terms MSM (men who have sex with men) and WSW (women who have sex with women) are still used in research data, even after the LGBTQ community has repeatedly pointed out that the terms add to social stigma.
Research by agencies like the CDC carries weight, and unfortunately even when there are efforts made to gather data, they run into another problem. Although trans women were being talked about, we weren’t being talked to. It happens all the time. I have been a part of focus groups where I’m asked questions by someone who has read about the experiences of trans people but has not lived them. It doesn’t disqualify them from doing the work, but it does shape how they approach the conversation and what they view as critical. So we took matters into our own hands.
The Positively Trans National Advisory Board is composed of trans people of color living with HIV across the country. There are no better experts on our lives than us. At every level of our process for the needs assessments we conducted, we wanted to invest in our community. Therefore, we wrote the research questions, and our hub leaders—other trans women of color living with HIV—helped us collect data. They know the lingo, they are not judgmental, and their participation was mutually beneficial. Some participants had to learn how to do data collection, a skill they can now take with them whenever they apply for work.
Positively Trans’ work is not transactional—it’s transformational. This research is for us, by us, and framed by our experiences and our motivation to see our communities faithfully represented.
Released in July, our 2018 needs assessment was focused on some of the geographic areas most affected by the HIV and AIDS epidemic—New Orleans, South Florida, and Detroit—155 people participated, with 67 percent of respondents identifying as African American and 27 percent identifying as Latinx. The majority of survey respondents identified as trans women (76 percent) and about 80 percent were age 44 or younger.
Our respondents live in the areas the CDC plans to focus on, should it receive funding for Ending the HIV Epidemic: A Plan for America.
A New Orleans participant shed light on how a lack of trans health care impacts health-care experiences: “We are partners. You cannot do your job without me. You’re not doing me a favor. I should leave the clinic feeling like I played a part in my wellness, and I also taught you something.”
Among other things, the 2018 needs assessment found: nearly half of the respondents were unemployed; over half had experienced incarceration in their lifetime; and more than a third had gone six months or more without HIV care. Respondents reported their greatest legal need to be regarding employment discrimination, HIV-related discrimination, and name change or ID document-related discrimination.
We released the results in community forums in the same locations in which we’d collected data. We did that so that they could engage with the data and provide us with feedback. Our goal was to ensure that people understood that they are a critical part of the process and that the information they were giving us would shape our continued presence in the community. If we were missing a critical perspective, we wanted to hear it.
We focused on these particular areas based on the feedback we received from our first needs assessment. We’d like to see CDC build research models that engage with participants in the same spirit of partnership and respect.
During the disruption at USCA, Redfield also heard from Naina Khanna, executive director with Positive Women’s Network. She once again rang the alarm on how problematic and potentially harmful molecular HIV surveillance is. People held signs on stage that read, “Cluster [Are] People,” alluding to the fact that while the CDC tracks clusters of HIV transmissions, in places where HIV is criminalized, they are in fact talking about people. This year, we learned that U.S. Immigration and Customs Enforcement is separating immigrant children from their parents living with HIV. Our concerns on molecular HIV surveillance are founded on the horrors we’re learning about every day. What if instead of us having to disrupt a conference to force a dialogue, the CDC actually approached us as partners in this work?
The people who have the luxury of working for government agencies and having their viewpoints centered at conferences are not usually the people who fear being murdered in their communities simply for being who they are. Trans women of color, and particularly Black trans women, have more on the line when it comes to our liberation. Health advocates must talk about how gender experience, race, and class affect our ability to determine what is urgent and what is not.
It is important that the CDC recognizes its role within HIV prevention and transmission and work for all affected populations. However, for its efforts to truly shift, the CDC needs to follow in the footsteps of Positively Trans, by engaging trans communities in an authentic and transformational way. Trans women of color have always led the way. It’s time for the federal health agency to catch up!