CDR Community Spotlights: San Antonio, Texas
When CDC began conducting molecular analysis of HIV data at the national level, researchers were surprised to see a rapidly growing cluster of linked infections diagnosed in and around San Antonio, Texas. The Texas Department of State Health Services (DSHS) and CDC began studying the cluster in early 2017, initially identifying 24 linked infections. Following a full investigation, including reviewing and following up on data from partner services interviews, health officials discovered a network of 87 people with HIV – the nation’s largest identified HIV cluster at the time.
Most individuals in the cluster were young gay and bisexual Hispanic/Latino men. That fact was no surprise to the advocates and healthcare providers who had been working for years with this population.
“Many young people haven’t received much information about HIV or how to prevent it,” says Greg Casillas, assistant director of San Antonio’s Thrive Youth Center. “When they test positive, they’re afraid to disclose that information to their families or the community, let alone seek treatment. We’re a very conservative, closeted city. And that can make it hard for people to learn about HIV.”
But the size of the cluster came as a shock.
“Those of us working in the community had been seeing young people coming into HIV care very ill, with advanced infections,” says Dr. Barbara Taylor, an infectious disease specialist and assistant professor at the University of Texas Health Science Center in San Antonio. “So, we knew transmission was happening, but it was stunning to learn that we had the biggest cluster in the country [at the time]. Being able to visualize the scope of the problem like that was so important. It pushed us to think differently.”
Following a full investigation of an HIV outbreak initially thought to include 24 linked infections, health officials discovered a network of 87 people with HIV – the nation’s largest HIV cluster at the time.
This sparked a collaboration among patient advocates, city public health officials, academic medical center staff, and people with HIV to develop a response.
Thinking differently led to a gathering at a local restaurant, where a group of patient advocates, city public health officials, academic medical center staff, and people with HIV came together one afternoon to discuss how to respond. While the participants represented disparate groups, the detection of the cluster made them all acutely aware that something needed to change, including engaging people with lived experiences and focusing prevention efforts to stop transmission in this network.
“It was clear that what we had been doing wasn’t working for the younger people represented by the cluster,” says Taylor. “We recognized that we needed to take a step back, to listen, and to support people with HIV who were stepping up to take the lead.”
When the participants with HIV spoke, the stories they shared quieted the room. One after another, each person spoke of the challenges they faced. They described how hard it was to make and get to care appointments, the long wait times, and the judgmental health workers.
“People with HIV are already dealing with enough stigma,” says Glenda Small, a San Antonio resident and longtime HIV advocate. “If the receptionist at the clinic is disrespectful, if you have to wait 2-3 hours for your appointment, you may lose patience and walk out of there. Those interactions make or break whether a person can get their virus under control.”
After that first meeting, the group decided to gather weekly to share information and plan next steps. To highlight the critical need for more accessible, welcoming prevention and care, they named themselves the End Stigma, End HIV Alliance (the Alliance), and worked to develop and publish clear recommendations for providing stigma-free healthcare services across San Antonio.
Another early priority was expanding HIV testing, to ensure that diagnoses are made as early as possible. In part due to the work of the Alliance and its members, additional healthcare facilities – including hospital emergency departments and some family planning providers – have begun or expanded routine, opt-out HIV testing.
HIV treatment guidelines recommend that people begin treatment as soon as possible after receiving an HIV diagnosis, but only about three-quarters of people identified during the initial cluster investigation had started antiretroviral therapy. To address this problem and get people connected to treatment faster, the Alliance worked with the health department and care providers to create a calendar that shows which providers are available each day to initiate HIV treatment. Armed with this information, testing facilities can help a client with newly diagnosed HIV see a provider and get a prescription for treatment right away. The results are impressive: data from four local agencies show that in 18 months, the median time between HIV diagnosis to an initial HIV care appointment fell from 13 days in July 2018 to just two days.
With support from the DSHS, the Alliance has also helped increase the availability of PrEP in the community. Several facilities that used to focus on HIV testing and treatment have added PrEP services, and there are now more than 25 sites offering PrEP county-wide, compared with just four in 2016.
The End Stigma, End HIV Alliance worked with the health department and care providers to create a calendar for testing facilities that shows which providers are available each day to see clients to initiate HIV treatment. Over a period of 18 months, their efforts cut the median time between HIV diagnosis and initial HIV care appointment from 13 days to just two days.
Detection of the cluster and the response activities led by the Alliance also raised community awareness of HIV, and – advocates hope – fostered a growing openness to discussing the disease and the challenges faced by those affected. During the summer of 2018, the Alliance collaborated with a local theater to create an interactive production drawn from the stories of San Antonio residents with HIV. In 2019, the San Antonio Express-News ran a series of articles addressing the HIV cluster, with special attention to PrEP, HIV testing expansion, syringe services programs, and the role of stigma. A local HIV service organization, Beat AIDS, also sponsors billboards and bus ads promoting testing, treatment, and talking about HIV.
“Having these conversations together is important to reduce stigma,” says Casillas, who – along with Taylor and Small – is now a co-chair of the Alliance. “It takes just one voice to create change.”
While San Antonio’s HIV cluster was larger than any other cluster in the country at the time, the problems faced by the community are not unusual. The city’s response offers valuable lessons for others, says Jenny McFarlane, who manages HIV prevention programs for the Texas Department of State Health Services.
McFarlane says, “In San Antonio, they took advantage of the cluster being detected to develop a strong public health response that makes a point of asking about, acknowledging, and addressing the broader needs of their community.”