HIV-Positive Youth Activists Discuss How They’re Fighting Stigma and Enacting Change

By Zachary Zane April 12, 2019

April 10th marked the National Youth HIV & AIDS Awareness Day (NYHAAD) — a day where youth activists work to end HIV stigma, provide accurate resources, and increase awareness. While HIV doesn’t discriminate against age, young individuals under 25particularly LGBTQ people of color, are disproportionately affected by the virus. Yet, until recently, they haven’t been given the opportunity to become leaders and teachers within the HIV-positive community and beyond.


Young people living with HIV face immense legal and cultural discrimination, and too often are unable to get the resources they need. To combat this, Advocates for Youth launched ECHO — Engaging Communities around HIV Organizing — a council of youth activists living with HIV who are organizing online and in their communities. The first of its kind, the intention of the group is to decriminalize HIV and combat stigma.


As noted in ECHO’s “Unpacking HIV Laws” video released on NYHAAD (and featured below), roughly 700,000 young folks in the United States could benefit from taking PrEP, the daily pill that helps prevents HIV by close to 100%. Yet, since 2012, only around 30,000 prescriptions were issued to at-risk youth. And while 34 states mandate HIV education in schools, only 12 require that the information be medically accurate. In fact, 10 states still have laws that prohibit people living with HIV to bite and spit, even though it’s impossible to acquire HIV this way.



Launched less than half a year ago, ECHO members have fought to increase youth access to PrEP and testing as well as destigmatize those living with HIV in various ways. ECHO members hosted a mini-ball and HIV testing event, gave talks to encourage condom use among young people, and screened LGBTQ films.


In honor of NYHAAD, we caught up with a few of the young members of ECHO to discuss the next steps to help those living with HIV and to help further prevent the transmission of HIV.


How are young people driving a movement to fight for the rights of young people living with HIV?


Crescent Rose, 24, from Riverside, CA: We are sharing our stories in key moments to each other. We [are] not letting our past define our future, and we are breaking the stigma by being as successful as others.


Antonius Minnifield, 22, from Atlanta, GA: Young people living with HIV are working in their communities to connect young people to care, hosting testing and education events, and destigmatizing [and] decriminalizing HIV.  This is done through policy advocacy, digital organizing on My Story Out Loud — a digital storytelling project dedicated to uplifting the narratives of LGBTQ youth of color — and community mobilizing.


Why must we expand existing health and education services for people living with HIV? How can we best do this?


Lisa Watkins, 24, from Memphis, Tennessee: We must expand existing health and education services because it is what young people deserve. My views toward expanding services and curricula align with Advocates for Youth’s vision in which all young people are valued, respected, and treated with dignity. It’s also necessary that sexuality is accepted as a healthy part of being human and youth sexual development is recognized as normal. Society should recognize young people’s rights to honest sexual health education and provide confidential and affordable access to culturally appropriate, youth-friendly sexual health services, so that all young people have the opportunity to lead sexually healthy lives and become healthy adults.


What are ECHO members doing to help fight against HIV stigma and outdated, discriminatory policies?


Crescent Rose: Many of us are organizing events and fundraisers to open up the conversation about folks living with HIV. Everything we do as an individual or as a group is always political. We are opening up the conversation in hopes to remove stigma that’s been present since the 80s. The laws have not caught up to recent health advancements. Anyone [positive], regardless of age, can live a healthy life. By being able to meet other young people living with HIV, I was able to take the conscious decision to be out about my status on social media.


Antonius Minnifield: ECHO members are fighting against HIV stigma and outdated, discriminatory policies through community education sessions and social media campaigns. Unfortunately, 12 states criminalize oral sex with HIV and 10 states have laws against biting and spitting with HIV, despite the fact that saliva, sweat, and tears are unlikely sources of HIV transmission, since the concentration of the virus in these fluids is considered insufficient for transmission. As someone that has worked at a local HIV service organization, I was able to inform colleagues and peers about HIV laws and the impact they have. I work with youth to inform them about the importance of writing and calling their legislatures too.


The Trump administration took nearly a year to replace the White House HIV/AIDS advisory committee and has halted important HIV research because it involves fetal tissue. What can the current administration do better to forward his SOTU initiative to end the transmission of HIV in the US within 10 years?


Lisa Watkins: The current administration can first: support the meaningful involvement of young people living with and vulnerable to HIV. Second: ensure young people have access to comprehensive, age-appropriate, evidence-based sexual health education, and third: end HIV criminalization.


Antonius Minnifield: The current administration can allocate funding towards the social determinants of health which include homelessness, comprehensive sex education, opioid treatment, and reproductive rights.


What can people who aren’t living with HIV do to better support people currently living with HIV?


Lisa Watkins: People who aren’t living with HIV can advocate for HIV-related stigma reduction interventions and policies that strengthen protections from discrimination for people living with HIV, and those that identify as lesbian, gay, bisexual, and transgender.


Crescent Rose: As a friend, they can be there for them. People experience their journeys differently. Some can adapt easily and others cannot — due to preconceived stigma. In some ways, we can all be there for each other. Someone living with HIV goes through life the same as everyone else. There are heartbreaks, laughter, and many sunrises that bring forth a new day. The most important thing is to understand that each person goes through stress differently. Regardless if someone is living with HIV or not, understand that there are many ways to support them. And remember to laugh.


Antonius Minnifield: People who aren’t living with HIV can center the voices and experiences of young people by creating youth-advisory boards that compensate them for their time, advocate for comprehensive sexuality education, and ensure that young people have access to sexual health services and information. And simply telling a person living with HIV that they are loved and valuable can go a long way.


Anything else you’d like to add?


Crescent Rose: Young people today have the opportunity to stop the virus from spreading to other people. Keep an open mind, [get] regularly getting tested for all STIs, and talk to your partners about safe sex practices, such as PrEP, condoms, an undetectable viral load being untransmittable.


Zachary Zane is a Brooklyn-based writer, speaker, and activist whose work focuses on lifestyle, sexuality, culture, and entertainment. He was formerly the digital associate editor at OUT Magazine.His work has been featured in Rolling Stone, Washington Post, Playboy, and more.