In the beginning, Wanona Thomas was like so many others when they find out they’ve tested positive for HIV, the virus that causes AIDS. She was scared out of her wits and wanted no one to know.
There’s a reason for that, and it has little to do with the facts.
Fact: HIV doesn’t have to be a death sentence. Fact: HIV isn’t spread through touch, tears, sweat, saliva or urine; by breathing the same air, touching a toilet seat or doorknob, sharing eating utensils, or hugging. Fact: An HIV-positive person who is receiving treatment and who maintains an undetectable viral load has no risk of transmitting the virus sexually.
In the nearly four decades since HIV first made national headlines, you’d think we knew better, but while Thomas may not have been familiar with the facts, she has since felt the full sting of the lingering stigma aimed at people with HIV.
It’s pretty painful.
When a friend of the family had eaten from the same sandwich that she had, his children were taken from him that night because their mother believed they could have been exposed to HIV.
“It was incredibly hurtful,” Thomas said. “After so many years of advancements and talk about this disease, you would think that everyone knows that casual contact or sharing utensils with someone who has HIV does not transmit the disease.”
You’d think but a recent survey by Merck and the Prevention Access Campaign found that the vast majority of young adults who were not alive during the early — and darkest — days of the epidemic are misinformed about HIV and how it’s transmitted.
The survey found that 28% of HIV-negative millennials have avoided hugging, talking to or being friends with someone with the virus. Thirty percent said they’d prefer not to interact socially at all with people who have HIV.
In fact, the survey said that 23% of HIV-negative millennials — and 41% of HIV-negative Gen Z respondents — admitted they were either “not at all” informed or “only somewhat” informed about HIV. Nearly half of the HIV-negative respondents, who were all 18 to 36, said they believed the virus could be transmitted by someone whose viral load was undetectable.
Thomas, 27, of Atlanta was four months into her fourth and last pregnancy on Nov. 28, 2016, when she learned she was HIV-positive.
“This is not real,” she remembered repeating recently. “This is not real.”
Doctors ran the test five times. It was real.
“It was like my heart dropped into my stomach,” she said. “I wanted to get up and just run.”
She called her children’s father instead.
“If it weren’t for my children, I probably would’ve killed him and myself,” Thomas said.
The next day, she started treatment and in April 2017 delivered a healthy HIV-negative baby boy.
Today, Thomas has an undetectable viral load and is on a mission to make sure no one else is infected.
She is the face of a new educational campaign by Merck and the Prevention Access Campaign, “Owning HIV: Young Adults and the Fight Ahead,” aimed at changing perceptions about HIV among young Americans, who account for the majority of new diagnoses.
It is Thomas’ contention that stigma is still the fuel driving the HIV epidemic.
“Despite scientific advances and decades of HIV advocacy and education, the findings highlight a disturbing trend: Young adults overwhelmingly are not being informed effectively about the basics of HIV,” said Bruce Richman, founding executive director, Prevention Access Campaign and the Undetectable Equals Untransmittable (U=U) campaign. “These findings are a call to action that the crisis in the United States is far from over. It’s time to elevate a real conversation about HIV and sexual health among America’s young people, and roll out innovative and engaging initiatives to educate and fight HIV stigma.”
On the one hand, Thomas said it’s shocking to learn that millennials, those ages 23 to 36, and Generation Z, which includes those 18 to 22, still don’t know how HIV is transmitted, how it is managed or how people like herself are living and thriving despite a positive diagnosis.
“You’d think in 2019, people would know they can’t get HIV by simply talking to me or hugging me,” she said. “We can laugh a little, but it’s a crisis. They are stigmatizing us, treating us like we’re contagious or nasty. HIV is not who I am. It is a part of me.”
On the other hand, Thomas said that she understands. Young black heterosexual women like her are rarely seen in HIV awareness campaigns.
“When it comes to HIV, a lot of things are aimed towards gay men and women,” Thomas lamented. “As a young black heterosexual woman, I don’t see me. If I see a lesbian or gay couple, I’m really not going to pay as much attention because I don’t identify as gay. Not only do I not look like her, I’m from the ghetto, the hood.”
In August 2017, after learning her children’s father was having sex with transgender people, Thomas let go of her secret, exposing her status in a live Facebook post.
That day she launched LIVE IN YOUR TRUTH on Facebook to empower and inspire individuals recovering from any life-changing health condition or tragedy.
“I really want people to understand the importance of knowing their status, safe sex and prevention measures like PrEP and PEP,” Thomas said. “People should get tested every three to six months regardless of their relationship status because as long as the H in HIV stands for human, we’re all affected.”
For those who have already tested positive, she wants them to understand that they can not only live with HIV, they can thrive.
“Honestly I tell people you either let this hinder you or help you,” she said. “We all go through storms in life. The tendency is to wait until the storm is over to embrace the situation, but since we’re not promised tomorrow, we have to learn to dance in the rain. I was able to find the blessing in this, to turn my havoc into victory.”
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