Stigma, both against people living with HIV and those working with them, appeared to be the leitmotif of the recent Association of Nurses in AIDS Care (ANAC) conference in Portland, Oregon.
A brief ceremony by Two-Spirit (Native American LGBTQ) people living with HIV welcomed us in Navajo and Lakota and blessed the gathering. However, none of the presentations during the following three days addressed the impact of HIV on Native American communities.
Nurses and social workers caring for people living with HIV (PLWH) are prone to burnout as their "empathy muscle" gets overworked, Shannon Weber, M.S.W., of PleasePrEPMe, said in her opening keynote.
"It takes guts to leave our worldview and see the world through someone else's eyes," she acknowledged. Urging attendees to practice self-care, she also provided strategies for exercising that "empathy muscle."
Weber's message appealed to attendee Michelle Kohler, RN, of St. Luke's Hospital in Bethlehem, Pennsylvania: "Her program and education are right in line with what I have been realizing and with my own personal work." Kohler works with people who experience barriers to adherence, sometimes because they self-stigmatize after being diagnosed. "People need to understand it's not their fault. They did not ask for this. … They did not change just because of this diagnosis. They are still the same person," she emphasized.
The language used to present HIV information can reinforce stigma, Valerie Wojciechowicz of CAN Community Health and Vickie Lynn, Ph.D., M.P.H., M.S.W., of The Well Project noted in two separate sessions. Both referred to the 1983 Denver Principles, which demand people-first language when discussing PLWH, but noted that stigmatizing language continues to be an issue. "Reducing people to labels reduces their humanity," Lynn declared. A chart of English terminology to use or avoid was distributed at both sessions.
Stigmatizing terminology is also used in other areas. Some people, for example, use "clean" and "dirty" to refer to times when a substance user is or is not using, Lara Strick, M.D., M.S. and Tami Kampbell of the Washington State Department of Corrections noted in their presentation. Medications for substance use disorder can work even without counseling that addresses the disorder's psychological and social dimensions, Strick said. If such medications are started before someone leaves prison, some of the overdose deaths that commonly occur within the first two weeks after release can be prevented. However, to allow for such a transition into community care, corrections, tribal health services, and community health care providers must work together, Kampbell said.
Some of the unhoused youth that a Houston, Texas, program serves come from the juvenile justice system, Diane Santa Maria, Ph.D., of the University of Texas explained in her talk. Others were dropped off at the city's youth shelter when they aged out of foster care. Their risk of acquiring HIV is six to 12 times that of young people with stable housing. The program's prevention efforts include a smartphone app, services located in drop-in centers and the shelter, and partnerships with faith-based nonprofits that serve this population.
Between 2005 and 2019, the number of people experiencing homelessness in San Francisco rose by 30%, Adam Leonard, M.P.H., NP, AAHIVS, of the San Francisco Department of Public Health, reported. The key to serving them is flexible access to health care with integrated interdisciplinary services that can address people's other challenges, he said. The city's programs include drop-in health care centers, mobile units, and emergency shelters, most recently for people displaced by the California wildfires. An HIV Acuity Scale developed at the University of California, San Francisco can determine the level of additional support a PLWH might need, explained Elizabeth "Lizzy" Lynch, M.S.N., R.N., of that university, which in turn allows linking them to appropriate services.
While lack of stable housing may not be an issue for many older PLWH, trauma and grief are. Tez Anderson of Let's Kick ASS (AIDS Survivor Syndrome), a long-term HIV survivor, noted the many friends that he and others lost while they were young. Those years and nurses' compassion and struggle against prejudice, fear, and stigma in the San Francisco of the time were captured eloquently in the documentary 5B, which was screened at the conference. Three nurses featured in the film who spoke at a post-screening panel received a standing ovation. The film, as well as satellite meals and other items, were sponsored by HIV drug manufacturers.
One older person who once lived with HIV is Timothy Ray Brown, the "Berlin Patient." He recounted his journey since his 1995 HIV diagnosis and 2007 cure. He is currently taking daily pre-exposure prophylaxis (PrEP), because, he said, "I don't want to take a chance. I want a full sexual life." His treatment was possible because of Germany's universal health care system: "I never had to pay for anything in Germany, as far as health care goes," he explained.
In the U.S., lack of financial resources is an issue for many long-term survivors who did not expect to live this long, Anderson said. "Dead people don't need retirement accounts," he quipped. As older PLWH access senior services, they may have to deal again with the homophobia and stigma they thought had been overcome, Valerie Wojciechowicz noted: "When we're talking about senior centers, sharing your status at a senior center is not a good idea, because those folks just don't understand."
Stigma is also an issue for Latinas living with HIV, Michele Crespo-Fierro, Ph.D., M.S., M.P.H., RN, AACRN, of New York University, told us. While the community's emphasis on close family ties can result in shaming, it can also serve as a source of support. Racial disparities affect African-American women living with HIV even more than Latinas. They die at five times the rate of Latinas, reported Crystal Chapman Lambert, Ph.D., CRNP, of the University of Alabama at Birmingham. Daily stressors, higher rates of internal stigma, and a history of community trauma, including violent deaths, contribute to this statistic. One intervention targeting this population is a mobile app for sexual health issues, which is currently under development, Rasheeta Chandler, Ph.D., ARNP, FNP-BC, FAANP, of Emory University, explained.
Miguel Gomez of HIV.gov spoke about the Trump administration's plan to end the HIV epidemic, but he did not address the needs of communities of color or immigrant populations. Gomez avoided a question about how current immigration policy may impact the plan's ambitious goal of reducing new seroconversions by 75% within five years by calling on the next person in line after the question was raised. His invitation for audience suggestions resulted in a flurry of ideas. Issues raised included health insurance and affordability, sex education, women in clinical trials, the situation in Puerto Rico, permitted discrimination based on religious beliefs, as well as the lack of nurse representation at policy levels. About the plan, Gomez declared: "We have the right tools, the right leadership to end the epidemic in 10 years."
In his closing-plenary talk, Paul Kawata of NMAC was less enthusiastic about the leadership aspect: "The irony that we are trying to do this under this president is not lost on me." He noted that no epidemic has ever been brought under control without a vaccine or cure. We have prevention tools and HIV medications, but also social inequalities, racism, and trauma. "The question is, can we hang on long enough until there is a cure, there is a vaccine?" he asked. Kawata brought the conference full circle: "Ending the epidemic is how we heal ourselves."