An Unfortunate Perfect Storm: We Need To Talk To Gen Z about HIV

Long before COVID-19 changed the world, another ailment mystified doctors and the general public. In June 1981, physicians in California identified a bizarre virus, marking the onset of widespread confusion, fear, and chaos. This virus, which would later be known as HIV,  quickly garnered national attention. From coast to coast, news stations and print publications began to cover HIV; unfortunately, a majority of this coverage was steeped in stigma. For example, as this New York Times article highlights, HIV was initially labeled as “GRIDS” or Gay-Related Immune Deficiency.” During the late 80s and leading up to the early 2000s, whether for good or bad, HIV was propelled to the national spotlight, sparking critical conversations about treatment and survival. However, recent research shows that this trend is changing as Gen Z reports the least amount of knowledge related to HIV. Thus, a concerning paradox emerges- how did an ailment that once petrified the country morph back into one of exile, shame and silence?

Despite waning attention, HIV is still around, and most new cases are found in gay men ages 13-34. Of note, we know Gen Zers are between the ages of 13-27. Thus, an unfortunate and impactful storm is brewing, but we must predict the weather and prepare. If we do not talk to Gen Z about HIV in a new way, we are setting ourselves up for a massive and long term public health failure.

Image via GLAAD’s 2023 State of HIV Stigma Report

What happened: The boomerang of HIV advancements 

As briefly discussed, the 80s and 90s were filled with stories surrounding HIV. For example, longtime HIV advocate  Hydeia Broadbent who has now passed, rose to fame after a slew of daytime talk show appearances, especially on Oprah. See her brilliance at 5 years old here. While early conversations were problematic, vast improvements have been made when it comes to HIV treatment, and this is true for virtually every aspect of the HIV care continuum. For example, the development and implementation of effective antiretroviral therapies (ARTs)revolutionized HIV care as it transformed HIV from a fatal ailment to a chronic condition that could be managed if one is retained in care. Someone born in 2005 likely has a vastly different experience and perception of HIV compared to someone born in 1985 or even 1995. One generation grew up seeing decaying and lifeless bodies due to governmental negligence. The other grew up understanding HIV as a treatable and manageable condition. This would be like explaining how a VCR works to a 13 year old. Or asking a 15 year old to describe a Walkman or floppy disk. These issues are not discussed and if they are, they seem like ancient relics of the past. A past time that generations before were obligated to fight.

The effectiveness of ARTs was confirmed and reinforced in 2016, when the CDC officially endorsed the "U=U" principle, which stands for Undetectable = Untransmittable. This means that individuals with an undetectable viral load cannot transmit HIV through sexual intercourse. This idea was nonexistent in the early 90s. It is the equivalent of asking someone in 1998 about the impact of social media; the literal idea was not even formulated yet. It may be easier to explain physics to an ant than articulate U=U to someone in the 90s, if it was even possible. 

In addition to more treatments, we have experienced massive improvements in understanding how HIV is acquired and the best tools to mitigate new cases. Bush flooded the early 2000s with his ABC Plan, which stood for abstinence, birth control and condoms. While this was somewhat successful at the international level, this was not true domestically. This all changed with the introduction of PrEP in 2012. If taken as directed, PrEP is estimated to decrease risk by nearly 99%. 

To be clear, these advancements saved lives and ought to be lauded. But these advancements are not without unintended consequences as HIV is largely absent for public health discourse. While rates of HIV decreased for some communities, the stigma surrounding HIV is now growing, and HIV education is decreasing. In turn, Gen Z, many of who are of the age where they can legally consent to intercourse, report the lowest levels of HIV knowledge since the inception of the ailment.

Where does Gen Z Stand? 

According to Stanford, born between the years of 1997 and 2012, Gen Z is “a highly collaborative cohort that cares deeply about others and have a pragmatic attitude about how to address a set of inherited issues.” Politically engaged and generally progressive, Gen Z  is known to push for systemic changes for social justice. While this seems to be true for other issues, such as climate change and racial justice, this is not true for HIV. Multiple studies are evidence of this worrisome gap. First and foremost, GLAAD’s 2023 Stigma Report is incredibly insightful. A survey conducted by GLAAD and the Gilead COMPASS Initiative in February 2023 found significant gaps in HIV knowledge among different generations in the U.S. Despite being the most diverse and openly LGBTQ+ generation, Generation Z was the least informed about HIV, with only 34% displaying adequate knowledge compared to 62% of Generation X and 50% of Millennials. The report labels this as a “knowledge gap.”

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Image via GLAAD’s 2023 State of HIV Stigma Report

We Must Close the Knowledge Gap

As we continue to battle a myriad of emerging public health issues, it is understandable that priorities shift. For instance, Dr. Fauci, who became the face of our nation’s COVID-19 response, was also a trailblazer in HIV care in the 1980s and 90s. But a shift away from HIV, intentional or accidental, would be catastrophic long term, especially considering Gen Z's lack of knowledge. This is true for multiple reasons.

1. Where is the funding and attention? Gen Z’s lack of education and understanding of HIV did not appear out of the blue, and it also does not exist in a vacuum. A larger trend exists. These issues are not isolated, and it is crucial to isolate the key factors that brought us here. First, the coverage of and exposure to enthusiastic mobilization and substantial HIV advocacy does not receive the same attention/energy it once did. For many, HIV may seem like an old ailment. There are no longer TV stations covering ACT UP protests (or any other HIV protests for that matter). There aren’t even that many accurate fictional portrayals of characters living with HIV in pop culture period.

   As AIDS United reported earlier this year,  members of Congress introduced a 2024 spending bill that poses a severe threat to critical federal HIV programs, potentially derailing efforts to eradicate the HIV epidemic by 2030. The bill proposes a drastic reduction of $767 million in funding for federal HIV initiatives, including the complete elimination of the Ending the HIV Epidemic Initiative and all components of Part F of the Ryan White HIV/AIDS Program, which covers dental care. Lastly, the bill aimed to cut over $150 million from the Minority AIDS Initiative, leaving the most impacted communities of color, void of resources. 

2. A Looming Public Health Nightmare: For Gen Z, this lack of discourse, visibility, advocacy, funding, and research could easily and quickly translate into higher rates of HIV acquisitions and a resurgence of stigma and misinformation surrounding HIV. Testing for and treatment of HIV requires knowledge. However, Gen Z may have a skewed view of HIV in multiple ways. For example, if teenagers now perceive HIV as a regular chronic condition, they may not comprehend the significance of adhering to regular treatment. Or they may not know how testing and coverage work. Moreover, where does Gen Z learn about HIV? In some states like Iowa, education surrounding HIV has been removed from the curriculum. This is true despite GLAAD’s report above noting that 85% of people, including Gen Z, believe aspects of HIV prevention should be taught in schools.

   This should raise red flags for anyone involved in public health and/or youth advocacy. We know that historically, new cases of HIV are concentrated in younger gay men. In fact, going beyond GLAAD’s report, 2011 data from  The American Public Health Association revealed that young gay men ages 13 to 29 were the most severely affected by HIV and accounted for more than 25 percent of all new HIV cases during that time.

   Unfortunately, almost 15 years later, this discouraging trend has slightly changed, but the statistics do not reflect the massive advancements. For example,  CDC data from 2021 found that nearly 2/3 of all new HIV cases in 2021 were among gay and bisexual men between the ages of 13 and 34. 

 If we were to split the middle, the average Gen Zer would be about 19 years old, which means they were born around 2004. 2004 was a significant year.  Facebook was launched in 2004. 2004 was the year of Usher’s Confessions.  Janet Jackson’s Superbowl mishap also occurred in 2004. It is my genuine hope that those born in 2004 can also reignite advocacy and visibility of HIV for Gen Z. If not, we need to prepare for another storm.