In my youth, HIV was a death sentence. As a young gay man growing up in the Midwest, I already felt vulnerable about my identity and sexuality – not to mention the threat of HIV. Thankfully, throughout my career in HIV advocacy and services, I’ve seen attitudes towards the virus and sexuality evolve, while treatment options have improved significantly.
However, HIV is still having a devastating impact on young people, particularly in LGBTQ communities. These youth are in a critical phase of their lives where they are discovering who they are and need our support in making healthy choices. Though we aren’t living in the early days of the epidemic, when HIV would cut your life tragically short, that doesn’t mean the risk is gone.
As we think about our vision of a future without AIDS this Youth HIV/AIDS Awareness Day, we must look to young people. An AIDS-free generation is within our reach. Achieving this goal calls for both focusing our efforts on preventing new infections while supporting youth who are already living with HIV.
We can End AIDS by making sure no one gets it in the first place, but we have our work cut out for us. Young people age 13-24 account for approximately 22 percent of HIV diagnoses in the US – 80 percent being young men who have sex with men (MSM). The problem is particularly acute for young men of color. If current diagnosis rates persist, half of Black gay men and a quarter of Latino gay men will be diagnosed with HIV during their lifetimes. This is unacceptable given the increased awareness and medical advancements that have occurred since the peak of the crisis in the 1980s and 90s.
Despite this growing crisis, many young people may not be aware of their HIV status. Only 22 percent of high schoolers who have had sexual intercourse had been tested for HIV. Rampant stigma around HIV may prevent at-risk groups from disclosing their status, seeking out testing, or taking measures to prevent transmission. A Kaiser Family Foundation survey found that 33 percent of teens say there is “a lot” of stigma around HIV/AIDS, while another 51 percent say there is “some” stigma. And that doesn’t even include the stigma around sexual identity – LGBTQ youth are more likely to face bullying and other forms of violence, which can lead to mental distress and behavior that puts them at risk for contracting HIV. Same gender sexual exploration among teens is heavily under-reported. It also means LGBTQ youth are less likely to disclose their sexuality or understand how their sexual activity could put them at risk.
To prevent young people from contracting HIV, we must start with sexual health education that is age-relevant and meets teens where they are, in school and after school. Education around pre-exposure prophylaxis (PrEP), a vital tool to prevent HIV infection, is key. Sex is a part of life; mentoring and community-based programs can help young people understand how safe-sex practices can work for them so that they are empowered to enjoy themselves safely. Teens need sexual health education so they can make smart choices and proactively ask their provider if PrEP is right for them.
To fight stigma around PrEP, Governor Andrew Cuomo of New York recently proposed making it accessible to people under 18 without needing parental consent. This clears an enormous hurdle for teens that want to stay healthy but may feel uncomfortable asking their parents for permission. We need more youth-focused policies like this.
For those who have contracted HIV, comprehensive, culturally-competent care that addresses all aspects of health – including medical, sexual, and mental health; social support services; and substance use treatment – are critical for young people to remain in treatment to become virally suppressed and stay well. Youth living with HIV are the least likely out of any age group to be linked to care, and they also typically have a difficult time adhering to treatment for a number of reasons, including denial and fear of their HIV infection, misinformation, and lack of family and social support. At Amida Care – New York’s largest Special Needs Health Plan for people living with chronic conditions such as HIV – we provide access to integrated care to keep vulnerable populations engaged. Youth often lack previous experience in interacting with health insurance and health care, so services that help them access resources are essential.
To ensure that young people live long, healthy lives, we must provide the wraparound services necessary to build trust, provide support, and keep them on the path to wellness. Health care does not exist in a vacuum. With 40 percent of homeless youth identifying as LGBTQ, they are highly vulnerable to contracting HIV. Creating safe spaces for teens to spend time after school and linking them to secure housing opportunities will have far-reaching benefits. These efforts also must be designed to fit into the busy lives of young people. This will help youth living with HIV stick to medication in order to become virally suppressed and significantly lower their risk of transmitting the virus.
Another way to achieve this goal is to bring young people – particularly MSM – into the health care delivery system by offering workforce development programs in health navigation and outreach while paying them a living wage. This training will allow youth to reach out to their networks and relate to other youth in an authentic way, helping others living with HIV and those who don’t know their status. Amida Care employs Community Health Outreach Workers who have completed peer workforce development programs and are living with HIV, so they can relate to our members and understand their needs. Stable employment also increases the likelihood of adhering to medication, which means a longer, healthier life. Economic justice is a cornerstone to achieving population health goals.
Preventing just one young person from contracting HIV can save up to $500,000 in lifetime medical costs– and it gets us one step closer to ending the HIV epidemic. Too many young people, especially LGBTQ youth, are facing an HIV diagnosis. We have the tools to help our young people understand their risk, make smart choices, and end the epidemic.