Last year, a first-of-its-kind survey from the Prevention Access Campaign (PAC) in partnership with biopharmaceutical company Merck revealed some harsh realities around young people and HIV — particularly the startling lack of knowledge about the virus and how it is transmitted. In response, the Owning HIV campaign was created, which focuses on bringing the most current and accurate information to young adults about HIV, as well as combating its enduring stigma.
One of the most jarring pieces of data revealed by the survey was that young adults (ages 18-34) now account for the majority of new HIV diagnoses in the U.S. Then in November of 2020, additional previously unreleased data was revealed concerning Black Americans and HIV.
To discuss these new findings, PAC and Merck partnered again to host a free live virtual event in November led by Deondre Moore. During this Owning HIV webinar, several young HIV activists, including Moore, shared some of their own stories.
Diagnosed when he was a freshman in college, today Moore, now 26, says his mission “is to turn the tide and empower others…to join me and be the change we need in this world.” He was the first speaker at the event to share his personal journey.
“At the time that I received the positive diagnosis, I was 19 years old and HIV was far from a concern to me,” recalled Moore. “As a Black gay man, I was at high risk for contracting the virus, yet I never received the proper education about HIV up to that point, or really any meaningful sex education overall. I’ll be honest, I was devastated. I never really forget the feeling of having to tell my most important person in the world, my mom, that her baby boy is now HIV-positive. I was also angry because I didn’t have the knowledge that I deserved to have to protect myself from HIV.”
Moore then turned his attention outward, reflecting on how HIV has affected younger generations of Black Americans.
“As millennials and Gen Z, since 2017 we now account for majority of new HIV diagnoses in this country,” Moore said. “Think about it like this: the HIV and AIDS crisis that caused so many to die in the ’80s and ’90s is swinging back at us. Today’s crisis impacts the Black community even more deeply. In the United States, Black and African-American people made up 42 percent of new HIV diagnoses in 2018, making us the most impacted group compared to all of the races and ethnicities in the United States…. Now, the survey findings show that Gen Z and millennial participants — the furthest removed from the HIV crisis of the ’80s and ’90s — are not being effectively informed about HIV and its transmission. Ultimately, we have been left behind. After we share these initial survey findings, we issued a call to action to address this public health threat. And today we seek to deliver on this call.”
Next to share her story was Wanona Thomas, a young mother who was pregnant with her fourth child when she discovered her positive diagnosis at 24.
“As a straight woman, I am excited to bring my perspective to this conversation that is often overlooked within our HIV community,” said Thomas. “When I found out I was HIV-positive, I was absolutely crushed. I also was like the other 80 percent of the HIV-negative African-American respondents who reported being highly confident that they were not at risk of contracting HIV. This is why we are having these conversations today. Not only did I contract the virus from an unfaithful partner, but I was also four and a half months pregnant. I remember in that moment feeling like I disappointed my family and myself. I felt like from that moment on, as I would be viewed as a contagious thing instead of a person.”
Despite the difficulties she faced at the time of her diagnosis, Thomas ultimately was able to give birth to a healthy, HIV-negative child. Now she is dedicated to helping others who are struggling as she once did. In 2017, Thomas founded Live in Your Truth (Facebook.com/LIYTruth), a nonprofit empowering and inspiring individuals living through life-altering tragedies or health diagnoses.
“Ultimately, I now know that HIV does not define me,” Thomas said. “It’s just something that I have. Owning HIV to me means owning that part of my life, and living a normal, healthy life with HIV. Following my diagnosis, I quickly took actions by educating myself and working with my doctors to get on the right treatment. And after becoming undetectable, I was able to give a natural vaginal birth to a healthy baby boy. When I was diagnosed, I didn’t know anyone else who was outwardly HIV-positive — so I didn’t have anyone else who I could empathize with…. By using Facebook as my platform to communicate with the outside world, I was able to help others while also helping myself. It is a powerful platform to share information in a raw and unapologetic way.”
Thomas added that education around HIV in Black communities is key in both ending the epidemic as well as eradicating stigma.
“In the [PAC-Merck] survey, 53 percent of the African-American women living with HIV reported losing the option to have children due to their HIV. This doesn’t need to happen again. My experiences again are not singular, and I realized that there were so many other women out there who have faced similar situations and felt the same way I did. Based on my experiences [and] these shocking survey statistics, it’s time that we women find our voices within this HIV community and learn how to come together and lift one another up and overcome this type of stigma together.”
Next to speak was Yonce Jones, a young transgender woman who discovered she was HIV-positive at 17.
“My story is a little bit different,” Jones said. “Before I was diagnosed, I was educated about HIV. As part of a peer training program, while I was living in a group home, I thought I took the steps to protect myself based on this education. From a textbook point of view, I thought I did a good job…. But that’s why it’s so important that you hear my story about how I became HIV-positive. When I was 17 years old, I was in a committed relationship. I just knew we were in love. But what I didn’t know was that my man was HIV-positive. And guess what? He didn’t tell me.”
After her diagnosis, Jones didn’t receive any counseling around HIV treatment options or emotional support for the weight she was carrying on her shoulders.
“I was still in high school and was valedictorian that year,” Jones said. “I was scared and so ashamed. And most of all, I was alone.”
“The Owning HIV campaign is a movement,” Jones continued. “It helps so many people, transgender women and transgender men included. It helps to alleviate stigma and take steps to become educated, empowered, and mobilized. We must stop the pain and the suffering we have endured with ourselves and each other. Based on my experience working with the transgender community, there’s very little awareness about U=U (undetectable equals untransmittable). We deserve to have this education and tools just like everyone else to protect ourselves, become empowered and stop suffering.”
The panel also included Cameron Kinker, the program and communications manager for PAC and the U=U campaign; Dr. Peter Sklar, the director of clinical research at Merck Research Laboratories; and journalist Josh Robbins of ImStillJosh.com. For additional survey information and more about the Owning HIV campaign, visit Merck.com and enter “Owning HIV” in the search bar. To learn more about U=U, visit PreventionAccess.org.