Not gone, but nearly forgotten: HIV in youths during COVID

When I was in college three decades ago, someone close to me was diagnosed with HIV. He was in his early 20s. The only drug available was the controversial AZT, an expensive drug originally designed to treat cancer. I thought my friend would die. Since then, we have made tremendous strides, but HIV remains an issue, and COVID-19 only complicates matters.

In the midst of the coronavirus pandemic, it is easy to forget that HIV continues to be a serious problem and especially for adolescents and young adults ages 13-24. Although youth with HIV are not at greater risk of contracting COVID-19, youth whose HIV disease is not well managed are at risk for severe illness, or even death, due to a weakened immune system. Poor medication adherence is common among youth, so this is particularly concerning. Also, HIV will continue long after the COVID-19 pandemic ends.

Remembering HIV is still a problem, especially for young people, is important given the social issues facing our country right now. HIV lies at the intersection of racism, sexism, homophobia, xenophobia, ageism and classism. HIV also frequently coexists with stigmatized mental health disorders. Young gay and bisexual men, particularly those who are Black/African American (51%) or Hispanic/Latino (27%), account for most new HIV diagnoses. Fear of rejection or discrimination may prevent youth from disclosing their status to others, which becomes a public health issue when those others are sexual partners.

Youth with HIV must contend with the emotional impact of HIV stigma while also dealing with its practical realities, including limited health care access. Thus, growing up with HIV means growing up with health disparities.

Like COVID-19, we know how to prevent HIV. Pregnant women with HIV who take the proper medication can reduce the risk of transmission to their babies to less than 1%. We now have available biomedical prevention strategies, including pre-exposure and post-exposure prophylaxis (PrEP and PEP). It is virtually impossible for someone with HIV to transmit the virus if their viral load is undetectable, which speaks to the need for HIV testing and linkage to care. Once a highly deadly disease, HIV is now a chronic illness if managed with antiretroviral medication. Research for an HIV vaccine and cure are underway.

Yet, HIV is falling off the radar of many people’s consciousness in the United States. When I speak about HIV to my college students, I am often met with blank faces. Most of my students are too young to understand the AIDS crisis of the 1980s. Even some who did live through that period seem to think, mistakenly, that we have solved the problem. Colleagues and acquaintances who learn I am an HIV researcher often ask, “Is that still a problem?”

Calculations based on UNAIDS data suggest there will be approximately 16 new HIV diagnoses in the five minutes it will take to read this article. One in four will be youth. Approximately 60% of young people with HIV don’t even know they have it. Although AIDS-related deaths have declined overall, they have increased among youth.

We know how to treat HIV, but nearly one-third of people with HIV don’t have access to treatment. This has been made worse during COVID-19, given interruptions in HIV care services. For example, in South Carolina, over half of the HIV clinics had interruptions in services due to COVID-19, and more than a quarter closed permanently. We know how to prevent HIV, but there are political, social, and cultural barriers to effective behavioral and biomedical prevention strategies.

HIV is a behavioral disease, so what we know about HIV is being and will continue to be used to treat other infectious diseases now and in the future. Scientists can draw upon lessons learned from the HIV epidemic to address COVID-19 — from understanding the virus to organizing a governmental response and addressing stigma.

We also should continue to care about HIV because of its economic toll. The average lifetime cost of HIV treatment is nearly $400,000.

For all these reasons, we must not lose sight of the HIV epidemic, particularly among youth who represent our future. We must continue to support funding for an HIV vaccine and a cure. We also need to continue to support biomedical and behavioral HIV prevention strategies. PEP and PrEP should be made widely available. Everyone, including youth, should be tested for HIV regularly. We must ensure that young people who test positive can access antiretroviral treatment. We also need to support youth during the transition from pediatric to adult care because we know many stop receiving medical care during that time.

Supporting youth HIV prevention and treatment initiatives means funding HIV prevention and treatment initiatives. It means lobbying for policies that assume health care is a young person’s right, not a privilege. It means continuing perinatal outreach programs designed to test and treat pregnant women and advocating for comprehensive sexuality education in our public schools. It means making HIV testing widely available to young people.

Ending HIV requires acknowledging that HIV continues to be a problem, particularly among youth. COVID-19 should not avert our attention from HIV but, rather, redirect it. We owe it to young people to look at the problem.