It started with the stories. San Antonians living with HIV told us stories of shaming and alienation by friends, family, and worst of all, by their own health care providers. At the End Stigma End HIV Alliance of San Antonio, we heard these stories informally at first, and then we started collecting them — on stage one night at the Guadalupe Cultural Arts Center, in journals left in medical offices, through paintings and recordings, and later, through an academic survey and focus groups.
Health care staff talked about fear of infection, lack of training and knowledge about HIV, and perpetuation of stereotypes about people living with HIV. Patients talked about avoiding testing and health care as a way to avoid experiencing stigma. A patient said, “it’s disheartening to have to interview a doctor even though you’re the one going to seek help.” A health care provider heard a different patient’s experience with testing. “She said the minute they diagnosed her with HIV, it just went to, like, crickets. She’s like, ‘Nobody wanted to come in that room.’”
These stories matter because stigma and ignorance are stopping people from getting tested and treated for HIV in San Antonio at a time when HIV is more treatable than ever. Nationally, HIV incidence was declining pre-pandemic, while in San Antonio it was increasing. Too many of us remain unaware that:
- The average lifespan of people with HIV is 78 years.
- Usual treatment is one pill once a day, bringing the virus under control within several months (modern drugs are powerful).
- People with well controlled HIV cannot transmit the infection to other people, even with condomless sex, and generally have children unaffected by HIV.
- People who don’t have HIV can take a safe, effective daily pill (“PrEP”) to protect themselves from acquiring an infection
- San Antonio is a “Rapid Start” community. Our HIV clinics created a network of warm handoffs so that the median time between diagnosis and doctor visit is less than one day.
- Free HIV home test kits are now available at takemehome.org.
If HIV can be prevented with PrEP, and viral load can be suppressed to untransmissible levels, then we already have all the tools we need to stop HIV in its tracks. Right now. We just need to make it easier for people to get diagnosed, get into care and stay in care when they test positive, and to consider PrEP when they test negative. We need to ask what gets in the way of getting tested, receiving treatment, or accessing prevention.
And when we ask our community, the answer is clear. Stigma is a primary barrier. People are shamed out of asking for tests, rejected by family members when diagnosed with HIV and discriminated against by health care systems when they seek care.
At the End Stigma End HIV Alliance, a community-based collaboration of people living with HIV, health care providers, community-based organizations, researchers, and public health officials, we’ve created guidelines for stigma-free health care, with suggestions at multiple levels of care. For example, on an individual level, health care workers can use judgment-free phrasing and avoid excessive PPE, like putting on double gloves or gowns, that incorrectly implies HIV is spread by casual contact. At a team level, we can support trauma-informed care that treats all patients with respect and does not shame or punish patients when they miss appointments. At an organizational level, we can change workflows so we don’t constantly repeat intrusive questions about how the virus was contracted, sexual practices, and past drug use. We can also ensure warm handoffs to health care providers we know will treat patients with respect. To see all our guidelines, visit EndStigmaEndHIV.com.
Today, on World AIDS Day, come visit the AIDS Memorial Quilt by the Names Project, which will be on display at Woodlawn Pointe, 702 Donaldson Ave., from Dec. 1-7. After reflecting on the past, rejoice that we now have the tools to end HIV in San Antonio: free rapid testing, a pill that prevents HIV and effective treatment that allows people to live long, healthy lives without fear of passing the virus on to others. We are grateful to all the people who shared their stories with us and to the alliance members who worked tirelessly to help us understand how to do a better job getting these tools to the people who need them. Their one resounding message: “We are more than how we are perceived.”