According to the Centers for Disease Control and Prevention (CDC), 21% of all new HIV cases in 2016 were young people. Despite the clear need for frank conversations about HIV prevention, the CDC says that stigma, fear, homophobia, low testing rates, and a lack of sex education may all contribute to why some young people are at a higher risk for contracting HIV. But April 10 is National Youth HIV & AIDS Awareness Day, and young people are ready to make a change.
To help break down the stigma surrounding HIV and help young people get educated, Teen Vogue spoke with four young people living with HIV about what they want their peers to know. For these young people, advocacy goes well beyond one awareness day — they’re all part of Advocates for Youth’s Engaging Communities around HIV Organizing (ECHO), a program dedicated to lifting up the voices of young people living with HIV to prompt a shift in culture and policy.
This is what these young people want you to know about HIV.
Bryce Fegers, 23, Florida
“In school, sex education lessons were anything but inclusive for me. Most of the content was based on heterosexual relationships and abstinence. It was always weird thinking about how this harmful stigma was allowed to be taught in schools. For LGBTQ youth like myself, I had to figure out sex in a difficult, often traumatizing, way. Unfortunately, [only] 34 states and the District of Columbia mandate HIV education; only 13 states mandate that the information has to be medically accurate. I wish that I knew [then] the basics about HIV, and how it could potentially lead to AIDS. I also wish I had learned about prevention options, such as pre-exposure prophylaxis (PrEP). I was never taught about how common STDs are, how treatment works, and my options for accessing those services. I also wish that the lessons discussed consent, rape, and sexual assault.”
Antonius Minnifield, 22, Georgia
“The voices and experiences of young people living with HIV should be centered in any programs, policies, and conversations about them. With Advocates for Youth’s youth-adult partnerships model, it has been shown that programs are more sustainable and effective when youth are partners in their design, development, and implementation. When young people are authentically centered in decisions about their livelihood, they realize their potential and have an opportunity to grow into leadership. Young people living with HIV are leaders of the future and should be considered as such. People can also avoid stigmatizing language like ‘clean’ and incorporate people-first language, such as ‘person living with HIV’ rather than ‘HIV-positive person.’”
Gregory Meredith, 21, Washington, DC
“As we address the HIV epidemic, we need as many resources as possible. This includes access to pre-exposure prophylaxis (PrEP). PrEP is a daily pill that has been shown to reduce the risk of HIV infection [from having sex] by more than 90% in people who are at high risk. In 2018, the Food and Drug Administration expandedthe approval of PrEP to include [at-risk] adolescents. But there are still too many logistical, economic, and cultural barriers to young people receiving this vital medication. For instance, without insurance PrEP can cost up to $2,000 per month. There are a variety of benefits to being on PrEP, one being that it supports those who aren’t engaged in their health care system to become more involved. By having to be adherent and consistent with checking their status, PrEP clients are given the ability to check on their holistic health, not just their sexual health.”
Lisa Watkins, 24, Tennessee
“HIV criminalization laws, especially in my state, are based on outdated information. The law in Tennessee states that people living with HIV (PLHIV) who know their status can be charged if they do not disclose their status [prior to having sex with someone]. However, the courts often cannot determine whether or not a disclosure occurred. This [can] lead to the fear of people disclosing and also [fear of] wanting to engage in care, as well as getting tested if they do not know their status. The law also states that actual transmission of the virus doesn’t have to take place in order to prosecute, therefore, making the law unjust. This means that a PLHIV can disclose and also not transmit the virus and still undergo the prosecution process, and not only go to jail, but have to register as a sex offender.”