Marguerite Casey Foundation awards Journalism Fellowships and Scholarships to focus on families working for equity – and to challenge how the public thinks about poverty. Giuliani Alvarenga, a 2018 Scholar, looks at HIV services for Latinx women in LA.
Thelma Garcia is a veteran in HIV work with women. She began doing this work 25 years ago in Los Angeles, doing outreach to Mexican and Central American immigrants in places like East Los Angeles, long before there were many resources for work in communities of color, and when there was still a primary focus on gay and bisexual men. But she still did her work, first as a health educator with Clínica Romero – one of the first health agencies to advocate for Central American refugees in the ’80s and ’90s. Most of the women Garcia met on the streets of LA were contracting HIV due to being poor and, often, being in relationships with men they couldn’t ask to wear condoms. Some of these women were victims of violence, but – due to immigration status or not making enough money to leave – stayed with those partners, increasing their risk of HIV.
Garcia, of Guatemalan descent, was hired because she speaks Spanish and the demographic she worked with at the time was Central American and did not know much about HIV and other sexually transmitted infections (STIs). During this time, around 1994, people were arriving in the Westlake neighborhood in Los Angeles from El Salvador and Guatemala due to civil wars that broke out in those countries in the ’80s and ’90s – wars that happened along the same timeline as the HIV epidemic in the U.S.
“AIDS was a scary term back then, and [refugees] were very hesitant to come up to me and talk about these things,” said Garcia. She would do outreach work in MacArthur Park, among other destinations where the majority of Latinx people were newly arrived Central Americans, when people from countries like Guatemala and El Salvador were fleeing violence, much as they are today.
Garcia has moved up in the ranks but serves the same community. After working in the field at Clínica Romero for about two years, Garcia was hired as a bilingual HIV/AIDS specialist at the East Los Angeles Women’s Center (ELAWC) in 1996 and is now the director of HIV/AIDS services there. During her first few years in this work, she became hyper-aware of the needs in the community and the challenges these women faced.
“They were shy, but they knew something was wrong,” said Garcia. “They would share with me, ‘tengo algo ahí’ (I have something ‘down there’) and would point to their genital area.” Once Garcia gained their trust, she said, many of these women would share that they contracted HIV from their husbands, and on many occasions, these men forced themselves on them while under the influence of drugs or alcohol. Unfortunately, sexual assault is a common issue for women living with HIV, which is one of the reasons why ELAWC participates in a national campaign in April to bring about awareness of sexual assault.
In many ways, the challenges that face immigrant women from Central America that make them vulnerable to HIV are still similar. Yet they are arriving at a moment when receiving prevention, treatment and care services is a challenge due to the hostile environment for immigrants, particularly those from Central America, as well as attacks on reproductive health care for poor women as a whole.
According to the Centers for Disease Control and Prevention (CDC), about 258,000 women were living with HIV in the U.S. in 2016 – and these made up about 23 percent of people with HIV in the U.S. as a whole. And while only approximately 1,000 Latinx women were diagnosed with HIV in 2017, they had about the same number of diagnoses as White women, while being a far smaller proportion of the U.S. population. Studies also show that between 2010 and 2016, rates of HIV among Black and Latinx women decreased (by 25 percent and 20 percent, respectively), but some advocates worry that this progress may become stalled if new resources focus solely on gay and bisexual men or only go to health departments and not to community-based organizations that have a history and expertise in working with communities that are marginalized.
Trump’s HIV Plan May Miss Latinx Women
On the surface, this should be a time of expanding access to HIV prevention and treatment for all people living with or at risk for HIV. President Donald Trump declared his administration would lead a new plan to end the HIV epidemic in America within the next decade or so – and the leaders of federal agencies that are charged with developing the plan have been speaking to audiences of people living with HIV, advocates and medical and service providers on the overall goals of the plan. They have largely focused on initiatives to increase knowledge of status, connect people to care faster, increase viral suppression in people who are living with HIV and get more people at risk for HIV on pre-exposure prophylaxis (PrEP).
But some of the underlying issues for women, such as poverty and intimate partner violence, so far haven’t risen to the surface as part of this plan. And some of the Trump administration’s policies outside of HIV may run counter to these efforts.
Trump, under the advisement of his policy adviser Stephen Miller, has created policies like family separation and mass detentions of Central American families at the border and labeled those immigrants as “rapists and murderers.” Immigrants face months-long waits in detention centers before being processed. And yet, CDC acknowledges on its own website, “Undocumented Hispanics/Latinos may be less likely to use HIV prevention services, get an HIV test, or get treatment for HIV because of concerns about being arrested and deported.” The immigration policies of the administration would seem to make it more difficult for poor immigrant women to access services. According to Kaiser Family Foundation, 45 percent of undocumented immigrants are uninsured, compared to 8 percent of citizens. The administration recently proposed a rule that would consider an immigrant having used any non-cash social safety net programs, including Medicaid, as a reason to deny citizenship. This and similar recent policy proposals have added to an environment that could easily lead immigrant women to avoid HIV prevention and treatment programs even when they’re available to them.
In addition, the Republican Party attacks on government funding for Planned Parenthood (an organization that provided 740,000 HIV tests in 2017) have made a politically challenging environment for yet another place for poor immigrant women to get care.
“To eradicate HIV, we must protect access to the full range of reproductive health care; repeal the Global Gag Rule; protect Title X; ensure affordable prevention, testing, and treatment for all; and fight stigma by treating all people with dignity and compassion,” said Leana Wen, M.D., president of the Planned Parenthood Federation of America, in a statement responding to Trump’s federal plan.
Community-Based Programs Continue to Support Latinx Women
But Garcia and her team at ELAWC continue to work to ensure that women and girls live in a place of safety and personal well-being, with access to health services and support.
“Education is the key – if you educate yourself, you can protect yourself,” shares Garcia. “Helping different women in my community is the passion that keeps me going.”
And the work Garcia began in the 1990s continues. Alejandra Aguilar, who also works with Garcia, works with women living with HIV and survivors of intimate partner violence. Her focus groups touch at the core of what community support looks like for these women. Many of them have survived homelessness and abuse from previous partners. They attend focus groups with the purpose of healing from their past.
Jessica (not her real name) is one of the women who attend Aguilar’s groups. She was diagnosed with HIV in 2015: “Ale always invites me to workshops and we talk about meds, we get to know each other and we discuss topics that relate to women living with HIV,” she said. She found out she was living with HIV while homeless: “In 2015, I was living in the shelter, and that was when I found out about my status,” Jessica shared. “At first, I felt like the world was coming to an end.” In time, Jessica understood how to live her life with HIV and soon realized how community support would play such a major role.
According to Jessica, Aguilar – and being connected to a network of women through ELAWC – has played an important role in the path to her recovery. She now has a child who is HIV negative and healthy.
“I learned that I could be HIV positive and still have a child,” Jessica declared. “Attending the workshops at ELAWC has helped me a lot. That organization has some amazing people; they assisted me when I was pregnant and even gave me a baby shower. I am so grateful for their support.”
Garcia said that her work isn’t just for women like Jessica. It’s partially for women in her own family.
“I do this work because my cousin has gone through this,” she reflected. “My uncles didn’t understand her, nor did they support her well.”
Giuliani Alvarenga is a U.C. Berkeley alumnus who double majored in English and gender and women’s studies. He is a 2018 recipient of a Marguerite Casey Foundation Journalism Scholarship. This article first appeared on April 29, 2019 in TheBody: The HIV/AIDS Resource. Follow him on Twitter at @PrinceOfViana. He is a Sidley Austin Pre-Law Scholar and wrapping up his two-year clerkship with Munger, Tolles & Olson before he begins law school in New Orleans. Equal Voice is Marguerite Casey Foundation’s publication featuring stories of America’s families creating social change. With Equal Voice, we challenge how people think and talk about poverty in America.