Stigma keeps US youth at high risk for HIV/AIDS

If I asked you to tell me which age group has one of the highest incidences of HIV, I’m willing to wager that you wouldn’t say 13- to 24-year-olds. And, yet, these young people represent 20 percent of new HIV diagnoses, the second-highest rate of new cases, behind only 25- to 34-year-olds.

We must keep this in mind as we observe National Youth HIV and AIDS Awareness Day on April 10 — in the wake of two devastating court decisions that perpetuate stigmatization and harm to people living with HIV, making the situation even direr for young people.

Last month, U.S. District Judge Reed O’Connor struck down provisions in the Affordable Care Act that required insurers to cover free screenings, including tests for HIV, mental health, cancer and diabetes. In September 2022, the same jurist ruled that HIV prevention drugs like pre-exposure prophylaxis (PrEP) do not have to be covered by the Affordable Care Act, scuttling vital benefits that made the treatments more affordable and accessible.

These decisions affect all people at risk of HIV and do particular harm to young men (23 percent of all new male diagnoses), young people who identify as women (13 percent of new female diagnoses), and young people who are Black, Hispanic/Latinx and LGBTQ.

According to the Centers for Disease Control and Prevention (CDC), young people’s likelihood of getting HIV is higher because they don’t know their own or their partners’ HIV and STD status, are unaware of protective therapies like PrEP use drugs and alcohol, and they experience sexual violence.

Many of these causes can be traced back to the stigma around HIV and sexual behaviors.

Decades of research quantify the impact of HIV stigma. Multiple studies identify it as a limiting factor in HIV testing, prevention and treatment. Other investigations show that stigma has a unique effect on young people, including their ability to get and stay with treatment to stay physically healthy, and to seek mental and behavioral support to stay emotionally healthy. Stigma also informs how schools, friends, family and others view HIV and people living with it, weakening connections and eroding support so important to all of us, and particularly crucial for young people and those living with chronic illness.

To reduce youth incidence of HIV, I urge policymakers and practitioners to:

• Adopt messaging and outreach specifically for young people at risk for HIV. We’ve learned from working with other populations that testing and PrEP are powerful tools for preventing HIV spread. Yet, these strategies don’t resonate with young people because they don’t reflect the realities of their lives. Only 16 percent of youth who would benefit from PrEP have received it, compared to 23 percent of all age groups combined. We also must consider HIV interventions through the lens of intimate partner violence and sexual assault among students: 10 percent of heterosexual students and 20 percent of LGBTQ students were victimized in the last year.

• Combat HIV stigma. Lack of information and outmoded beliefs promote shame and perpetuate labeling and discrimination. One of the most effective ways to overcome stigma, according to the CDC and other researchers, is to talk about it. For example, the Center for Latino Adolescent and Family Health (CLAFH) at the Duke University School of Nursing, has developed the NO FEARS (Nurturing Ourselves: Family Education and Activities to Reduce Stigma) program, a family-based stigma reduction intervention that includes an animated video series and a family workbook to reduce the impacts of stigma and encourage adherence to treatment and care. 

• Add HIV testing to the regimen of school health screenings. Although the CDC recommends HIV tests for young people, only 6 percent of high school students have been tested for HIV, and as a result, almost half of those who have HIV don’t know it. Last year, the American Academy of Pediatrics issued a clinical report recommending “universal and routine” HIV screening in a health care setting for young people 15 and up, and at last annual rescreening for high-risk youth.

• Confront enduring institutional racism and implicit bias. The CDC notes that, “Addressing these social and structural barriers and encouraging safe and supportive communities can help improve health outcomes for people with or at risk for getting HIV.” Our society marginalizes young people in general, and increasingly women and trans youth, children of color, as well as those who inject drugs. We will not reduce the incidence of HIV in young people until we face down these systems that inform decision-making, policy and care models.

• Address the social structures that create and exacerbate HIV inequities. Young people make decisions within a social context: where they live and go to school, form romantic partnerships and have sex. Efforts to reduce youth HIV must consider these conditions. For example, CLAFH has developed a research-based tool that factors in social drivers of health influencing HIV exposure and susceptibility. The framework includes unjust social processes and strength-based resilience factors that help people thrive, to inform program development that addresses root causes and is relevant to young people’s lives.

Taking on these factors is critical to keeping young people safe and healthy by reducing the spread of HIV. Let this National Youth HIV and AIDS Awareness Day be the catalyst for creating interventions that let youth grow up without HIV. We must not let our country’s youth down.

Vincent Guilamo-Ramos is the dean of the Duke University School of Nursing and Bessie Baker distinguished professor of nursing. He currently serves as a member of the HHS Presidential Advisory Committee on HIV/AIDS (PACHA).