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Bringing the Perspectives of Young People Living With HIV to the Forefront to Create Change and Drive Solutions

Although the annual number of new HIV diagnoses in the US decreased from 2010 to 2016, young people aged 13 to 24 are among the groups with the highest incidence of HIV1 and the least likely of any population to be linked to care.2

In recognition of National Youth HIV and AIDS Awareness Day (NYHAAD), Marc Meachem, Head of US External Affairs, sat down with Larry Cohen, Executive Director of Point Source Youth, and Mahlon Randolph, Youth Advocate, to take a closer look at what’s causing these trends and discuss what we can do as advocates to improve these numbers.

Marc: One of the most critical issues in improving the lives of youth living with HIV is stigma. HIV stigma, perpetuated by misconceptions from cultural and religious beliefs, outdated perceptions based on information and images shared during the height of the epidemic, and many other sources, remains a common barrier for people living with HIV. How have you seen young people living with HIV experience stigma?

Mahlon: The narrative among HIV advocates has affected the way the general public sees their risk of HIV. One of the most common statistics shared with young people is the incidence within the community of contracting the virus. That stat alone has become stigmatizing and often prevents the community from getting tested. A lot of times, young people would just rather not know their status. The statistics around transmission, especially for young people, don’t adequately reflect viral suppression, and much of the messaging directed to young people cautions them not to contract the virus, rather than educating them on how to live healthy lives if they do. For example, we could make clear that without proper care and support, certain groups may be at higher risk, but with those resources, people living with HIV can thrive and achieve a viral load that would prevent them from transmitting the disease. If we reframed how we talk about the statistics, we may see more encouragement within the community to overcome fears of getting tested and seeking care.

Marc: Another area where we see a huge gap for young people is the lack of adequate sex education. In most states, fewer than half of high schools teach all 19 sexual health topics recommended by the Centers for Disease Control and Prevention (CDC), which includes HIV.2 It’s important that young people have access to easy to understand yet robust sex education to help prevent behaviors that can increase the risk of HIV, including substance abuse, low rates of condom use and multiple sexual partners. Does what you’re seeing and hearing on the community frontlines reflect this same lack of HIV education?

Mahlon: It does. The discussion around sex education is lacking, and youth is where we are seeing the highest rates of new HIV diagnoses and the lowest rates of viral suppression. One of the biggest issues is not enough appropriate information for youth around HIV and sexually transmitted infections (STIs), but there has to be a cultural change for a systematic change. We need to educate people on how to prevent HIV and how to live well with HIV. The only way to end the epidemic is access to care and education for all and not just education after one has contracted HIV. Most advocates and educators around HIV are living with HIV themselves because that is the only way they have learned about it! We’re here, we’re people, and reaching us doesn’t necessarily have to be any harder than reaching other people, if done right. My life is the same, and I'm still a person. We are missing the opportunity to educate everyone.

Marc: There’s a renewed national interest in ending the HIV epidemic in the US by 2030, but we can’t do that without recognizing contributing societal factors like poverty, homelessness and incarceration. The fight to end HIV can easily be lost upon those who are fighting to survive. What do young people living with HIV and the groups that support them need to know about ending the HIV epidemic?

Mahlon: I want people to know that there is hope. Also, I would encourage people and organizations to take advantage of their platforms, whatever they may be – Instagram, Twitter, TikTok, etc. They can share information, be the change we want to see and make their work a conduit for change.

We understand the importance of access to reliable health information and are committed to continuing to listen to the needs of our community and deliver insights, resources and understanding of HIV to ensure that no one living with HIV gets left behind. The best way for us to keep up the momentum is to continue bringing the needs of young people living with HIV to the forefront and sharing resources that respond to those needs.

At ViiV Healthcare, our Positive Action for Youth program supports innovative solutions, nurtures mentorship and develops young leaders to close the gaps in HIV prevention, treatment and care. It also supports young people living with HIV as they transition from adolescent to adult care.

Point Source Youth also has many resources to help young people living with HIV, particularly those experiencing homelessness and unstable housing, including videos from their conference, the National Symposium on Solutions to End Youth Homelessness, and a digital library of stories from the community on youth homelessness and the importance of providing the housing young people need.

Check back next week for more insights on challenges facing young people living with HIV. It’s an unprecedented time, and Larry and Mahlon have shared more on how COVID-19 has introduced new and unexpected challenges for the nation’s most vulnerable individuals.

References:

  1. U.S. Centers for Disease Control and Prevention. HIV Surveillance Report: Diagnoses of HIV Infection in the United States and Dependent Areas, 2015. Available at www.cdc.gov/hiv/pdf/library/reports/surveillance/cdc-hiv-surveillance-report-2015-vol-27.pdf. Last accessed March 2020.
  2. U.S. Centers for Disease Control and Prevention. HIV and Youth. Available at: https://www.cdc.gov/hiv/group/age/youth/index.html. Last accessed March 2020.