Forty years after AIDS appeared, it’s still an epidemic of silence, neglect and death

Dr. Rafael E. Pérez-Figueroa and Dr. Kathryn M. Cardarelli
·3 min read

The HIV/AIDS epidemic is one of the greatest public health challenges of our era. June 2021 marks 40 years since the first cases of AIDS were reported in the U.S., a disease caused by the HIV virus. While we are witnessing an extraordinary response to the COVID-19 crisis, the response to HIV/AIDS continues to be characterized by silence, neglect, and inadequate outcomes. The intersection of homophobia, racism, stigma, and social marginalization makes HIV/AIDS the story of a metaphor—a metaphor that underscores suffering, injustice, and death, but also one that has catalyzed community organizing and human rights advancements. The HIV/AIDS epidemic is like a tortuous light that invites us to work together for a greater good while revealing the reality of the world surrounding us.

Since 1981, more than 700,000 people have died from HIV-related illness in the U.S. Four decades into the HIV/AIDS epidemic, more than 1.2 million Americans live with HIV, and 35,000 continue to become infected annually. Sexual and gender minorities and people of color continue to be disproportionately impacted by HIV/AIDS. Due to the success of antiretroviral therapy, HIV has been transformed into a chronic and manageable health condition. However, despite the improvements for people who can access health care and be consistently on treatment, a sizable proportion of people living with HIV continue to face significant barriers to access and engage in health care.

At the beginning of the epidemic, HIV/AIDS was articulated as a disease of “homosexuals” and “drug users”, thereby the meanings, representations, and political agendas at the time guided the understanding. We currently have more awareness and sensitivity, but HIV involves complex physical, emotional, social, and legal concerns, making it different from other health conditions. The changes in understanding, acceptance, and fairness in this country have not been as dramatic as the advances in our HIV treatment and care. Stigma and discrimination—fueled by hate, ignorance, and intolerance—persist and remain, framing the wellbeing of people living with HIV and resulting in inadequate and substandard care that often leads to inappropriate interventions, alienation, and mistrust.

In the Commonwealth of Kentucky, more than 7,330 people live with HIV. Rural counties heavily impacted by the opioid epidemic are among the most vulnerable areas for HIV/AIDS. HIV cases have been increasing among people who inject drugs in the Appalachian and Northern Kentucky regions. These areas lack needed health infrastructure to deal with HIV/AIDS. Coordinated and encompassing efforts addressing surveillance, education, prevention, care, and harm reduction are essential to reduce the risks of HIV/AIDS.

In 2019, the Department of Health and Human Services launched Ending the HIV Epidemic, a national initiative aimed at reducing new HIV infections by 90% in 2030. This strategy canalizes successful programs and resources to support jurisdictions heavily affected by HIV/AIDS. Kentucky is among seven targeted states in phase 1 of the initiative. While the strategy is promising, it does not take place in a political vacuum. In recent years, policies and practices limiting health care access and undermining the wellbeing of sexual, gender, and other minority groups have been proposed, jeopardizing the reach and success of the initiative. These contradictions make the aspirational ten-year goal unachievable, as a model has suggested. However, we can still achieve progress with high levels of engagement in care and increased prevention uptake if we address stigma and discrimination.

As we prepare to celebrate Pride this month, the commemoration of an uprising against homophobia led by sexual and gender minority people of color, let’s commit to building a more equitable society- one in which all people living with HIV, especially those disproportionately impacted, can achieve health and wellbeing. The HIV/AIDS epidemic has taught us how to do that effectively. We can do this as a community. We call on leaders in Kentucky and the nation to sustain efforts required to end the HIV/AIDS epidemic.

Dr. Rafael E. Pérez-Figueroa is an Assistant Professor of Health, Behavior and Society, and Dr. Kathryn M. Cardarelli is an Associate Professor of Health, Behavior and Society at the University of Kentucky College of Public Health. The opinions are their own, not those of the University of Kentucky.