“You cannot end the HIV epidemic against all without working with the transgender community,” says Arianna Lint, founder and director of Arianna’s Center in Fort Lauderdale.
The discrimination against transgender people is well recognized, as well as the resulting greater risk of HIV infection. That script can be flipped with greater empowerment of the community, says Lint and other transgender advocates.
“We are not the problem. We are the solution,” Lint says. “And we have proved that. Casa Rubia in Washington is one of the best examples of housing for transgender individuals. TransLatina Coalition, based in Los Angeles, is one of the best examples for advocacy and working with state laws and policies to change them for the better for the transgender community. My organization can provide help in working together to make changes happen.”
Arianna’s Center provides a wide range of services. There is help with education, employment, health care, and immigration. Lint herself is an immigrant from Peru. The center uses an integrated case management model that tailors the services to the needs of the individual.
Then there’s also political advocacy and assistance with data collection, important components in wielding power and creating change.
Or as the center’s website breaks it down: “helping individuals thrive” and “building community power.”
Getting the data
At the International AIDS Society conference this year (IAS 2021), transgender activists and allies issued a manifesto that included a push for greater research participation.
“The No Data No More manifesto, written and informed by trans and gender-diverse (TGD) advocates from Cape Town to Cologne, with support and solidarity from AVAC [a U.S.-based HIV prevention advocacy group], offers practical and essential priorities to manifest meaningful change,” the team wrote. “We believe the future must include peer-led HIV prevention research with true ownership, acceptability, and viability in TGD communities.”
The Transgender Law Center, located in Oakland, California, saw—and met—the need from its inception. Founded in 2002, the center not only works for legal rights and changes, led by a transgender staff, but has also collected data of its own.
Earlier this year, the center issued a report, The Roots of Anti-Trans Violence, presenting data and stories from Louisiana, New York, Texas, and Puerto Rico. As early as 2006, it reported the results of an economic survey of transgender people living in the Bay Area.
And the center’s Positively Trans project paired up with Arianna’s Center for a 2018 needs assessment of transgender and gender non-conforming people living with HIV in the Miami and Fort Lauderdale areas. Among other things, that report found high rates of housing and employment discrimination reported by transgender and gender non-conforming survey respondents, particularly those who were African American.
“I think one of the biggest problems for the transgender community, especially in the South, is the lack of official data for transgender individuals,” says Lint. “That’s why my organization advocates for data. We made the first needs assessment for transgender individuals living with HIV in Broward County and Miami-Dade County. I worked closely with the Transgender Law Center on the study titled, Our Knowledge is Our Power. And that is true.
“Transgender individuals and people living with HIV are experts on issues that affect them,” Lint says. “We need to ensure that decisions being made place an emphasis on the input and lived experiences of the people they most affect. It’s our time to make sure our knowledge is seen and heard and make the powerful decisions that impact our lives.”
That impact showed with another research project this year. “We just finished a project with a school of social work in Puerto Rico surveying the transgender community,” she says. “Only 120 respondents were needed. But they partnered with the transgender community and got 350 respondents. ... It’s so important to have data and prioritize the needs.”
Transgender individuals and people living with HIV are experts on issues that affect them
That report will be presented as this issue is released in November, which is also the month in which Transgender Awareness Week (November 13–19) takes place.
Getting the power
Lint looks at needs particularly in the face of obstacles.
“It’s more of a danger living in the South if you are a transgender individual. That’s why it’s so important for me to highlight the good work, the teamwork, and the leadership of the transgender community, because that’s how changes are being made. Bambi Saucedo. Ruby Corado. Cecilia Chung. Other amazing leaders. Tori [Cooper’s] appointment [to PACHA—that is very empowered.
“Just last week we celebrated our sixth anniversary,” says Lint. “It’s important to show the talents of trans-led organizations, of trans-led advocacy.”
Earlier this year, the U.S. Centers for Disease Control and Prevention (CDC) issued a report on HIV in the transgender community. Among the findings in HIV Prevalence Among Transgender Women in 7 U.S. Cities, 2019-2020, 42% of the women overall were living with HIV. This compares with less than half of one percent (< 0.50) of the U.S. population.
As with previous HIV surveillance reports, however, the CDC found racial and ethnic differences for the groups of women surveyed:
- 62% of the Black or African American transgender women were living with HIV
- 35% of the Hispanic or Latina transgender women were doing so
- 17% of the White transgender women were positive
Another growing movement in the transgender community is addressing the need for gender affirmation and gender-affirming care.
According to the CDC report, 18% of the women reported “having seriously thought about suicide.” This number was lower for the women living with HIV, 12% vs. 22% for those who were HIV-negative. The CDC pointed to a previous report, however, showing that 40% of transgender people attempted suicide in their lifetime (the 2015 U.S. Transgender Survey, from the National Center for Transgender Equality).
The CDC report went on to say that, “Gender affirmation may lower suicidality among transgender women. A study found that gender affirmation was significantly associated with lower odds of past-year suicidal ideation and psychological distress; gender affirmation also mitigated the association between discrimination and past-year suicidal ideation.”
Lisa Spedalle, RN, of the Visiting Nurse Service of New York (VNSNY), places gender affirmation front and center in her work with women undergoing post-operative transgender care, along with emotional support and medical expertise. She has spent the last two of her 20 years with VNSNY working in its Gender Affirmation Program (GAP). VNSNY is one of the largest nonprofit home- and community-based health care organizations in the U.S., and has received the SAGECare Platinum level LGBT cultural competency credential from the national nonprofit organization SAGE.
Because VNSNY works in people’s homes, it’s important to know the partners as well as the family members who are involved. The partners are also going through an emotional situation, says Spedalle, and they have experienced stigma and discrimination as well. The stress of post-operative care is hard for all caregivers, she notes.
“It’s extremely important that as soon as I walk in there, they know I am non-judgmental, and I respect them,” Spedalle says. “First of all, it’s very important to get the pronouns correct. And if you don’t, apologize and start over, but it’s extremely important.”
“Every patient has spoken to me about discrimination they face from healthcare providers,” says Spedalle. This included programs specifically for transgender people. “They say lack of education is the biggest problem, and finding that people are judgmental. They say people are not as knowledgeable as they could be or should be. So I can feel their relief and their gratitude for the extensive training and knowledge that we provide.”
As a nurse who’s passionate about helping her patients, she’s troubled by the poor healthcare experiences they’ve shared with her.
“Your primary care physician—that relationship with your PCP is like your relationship with your mom and dad. If they don’t know something, they should figure it out. If not, that’s incompetency,” she says.
There’s a need for health care workers and other service providers to promote the supportive care shown by Spedalle and the VNSNY. In addition to the leadership of the transgender community.
Leading the way
Says Arianna Lint, “Empowerment is central to our mission at Arianna’s Center. But I strongly believe that effective empowerment means centering the leadership of transgender individuals and those living with HIV. While the input of our allies is essential, it is the example that is set from within our community that leads to true empowerment.”
Transgender men and HIV
A recent article in Medical News Today examines What to know about HIV and transgender men. Transgender men who have sex with men may be at greater risk for HIV, but the article also looks at HIV prevention for transmen. Go to medicalnewstoday.com/articles/hiv-and-transgender-men#summary. See also Safer Sex and Sexual Health for Trans Masculine People at tht.org.uk/hiv-and-sexual-health/sexual-health/trans-people/trans-masculine/safer-sex.