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HIV is no longer a death sentence. But decades-old stigma persists.

Advocates want to see better health education in schools, better access to health care and, ultimately, an end to the epidemic.
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In 2014, Deondre Moore, who was 19 at the time, decided to get an HIV test while he and his friends were at a nightclub in Houston. 

Moore wanted his friends to get tested, “so I knew that the best way to do so was to lead by example and do my test first,” he said. He was tested earlier that year, and had recently been in what he thought was a monogamous relationship with a man he was in love with, so he wasn’t worried about the results.

“They tested me for HIV, I knew it would come back negative,” he said. “Went to the back, ready to hear my results, and he said, ‘Your test came back positive.’”

Moore said he “made up a whole scenario” in his head about why he thought the test result was wrong. But just over a week later, a doctor at the student health clinic at Sam Houston State University, where he was a freshman, confirmed the result. 

“The doctor walked in, and very quickly got it out of the way. And he said, ‘Mr. Moore, I'm sorry to tell you, but our test confirmed that you do have HIV,’” he recalled. “What I heard the doctor say was, ‘Yeah, you are going to die.’”

Now 26, Moore takes just one pill a day — an antiretroviral treatment that makes the virus undetectable and untransmittable to others. It’s not a cure, but it means that, unlike a few decades ago, people like Moore can live long, healthy lives. 

Treatment for HIV has come a long way since June 1981, when the Centers for Disease Control and Prevention published its first scientific report describing the disease now known as AIDS in its Morbidity and Mortality Weekly Report. But advocates say there’s still more work to be done. Stigma surrounding HIV is persistent, and the virus disproportionately affects gay and bisexual men of color, particularly Black men, due to inequality in a variety of areas. 

Advocates want to see better health education in schools, better access to health care and, ultimately, an end to the epidemic.

A lack of education — and more HIV cases among young people

Moore’s mother, Kathleen Wingate, said that she didn’t personally know anyone who was living with HIV prior to her son’s diagnosis, so she didn’t know anything about it. Going to his doctor’s appointments with him helped a lot, she said. 

The doctor explained to her that she couldn’t contract HIV from hugging her son, kissing him or sharing food and drinks with him. 

“And I always thought, ‘Oh, if he touches me ... If somebody touches you, you're going to get it.’ I've heard that,” Wingate said. But the doctor told her that if Moore took one pill every day for the rest of his life, he could live to 90 or 100 years old.

Misinformation and stigma persist in part because of poor sex education across the country, said J. Maurice McCants-Pearsall, director of HIV and health equity at Human Rights Campaign. 

He noted that young people ages 13 to 24 are overrepresented in new HIV diagnoses, with the age group making up 21 percent of the category in 2018, according to the CDC. Young gay and bisexual men account for 83 percent of all new diagnoses in the age group, and young Black gay and bisexual men make up 42 percent of new diagnoses among young queer men.

“And then we have to ask the question, well, why is that?” McCants-Pearsall said. “Well, there's a direct correlation with a lack of sexual health education and HIV in young folks between the ages of 13 and 24. That's undeniable.”

He said HIV’s impact on Black and brown people is also due to social determinants of health, which he said aren’t being addressed for communities of color. “It's not just enough to give someone a blue magical pill and say, ‘Oh, this is going to prevent you from contracting HIV,’” he said. “No, we have to have comprehensive health care for folks, then address all their needs from mental health to behavioral health services, to increased access to medical treatment and/or prevention services … equal access to educational, employment opportunities, housing.”

Legislation also plays a role. Thirty-seven states criminalize exposing someone to HIV, according to the CDC. McCants-Pearsall said 11 states have laws that make it a felony to spit or bite someone if you have HIV, “even though we know the science tells us that it is not possible to transmit HIV through saliva.”

Twenty-five states also criminalize one or more behaviors that pose low risks for HIV transmission, he said. The penalties for violating these laws can include prison time: 18 impose sentences of up to 10 years, seven states impose sentences of 11 to 20 years, and five states impose a sentence of 20 years “and this is not based off of behavior motivated by intent to harm,” McCants-Pearsall said. 

“This is based off of you not disclosing your status or merely the perceived exposure to HIV, and that's ridiculous, totally ridiculous,” he said.

Ending the epidemic

Thom Kam, 65, was diagnosed with HIV in 1992. He used all natural and alternative therapies to boost his immune system until 1996, when he was hospitalized and officially had AIDS. At that time, the result of a six-month study showed that a combination of three drugs was effective at containing HIV. 

“And I did that regimen eight hours every day around the clock on an empty stomach for three years, which was 4,000 plus doses without missing a single one,” he said. “But I knew how lucky I was. I knew how lucky I was to actually be able to do that ... really grateful. And so I did and embraced it for myself and for all the other guys who hadn't had the opportunity.”

In the ‘80s and the ‘90s, he said, he never thought it would get to this point, when one pill a day can make HIV undetectable. “I didn't know if we could or not,” Kam said. “It was one big dark tunnel, and there was no light at the end.”

Treatments have improved, but Moore said HIV has been around for 40 years, and there’s no cure or vaccine. He added that about a year and a half into the Covid-19 pandemic, however, multiple vaccines exist.

“I think it just speaks to who's mostly affected, and who was mostly affected then,” he said. Because the HIV epidemic disproportionately affected queer men, and Black and brown people, “no one cared, no one listened,” he said.

But that is not a view that Dr. Anthony Fauci, the nation’s top infectious diseases expert, shared.

Fauci, director of the National Institute of Allergy and Infectious Diseases, who was a leading researcher during the AIDS epidemic in the 1980s, said the fact that there’s a Covid-19 vaccine and no HIV vaccine is “a scientific issue” and “has nothing to do with effort.” 

“We have spent literally billions of dollars on an HIV vaccine. No doubt,” he told NBC News in response to a question in May. What makes a vaccine successful is when the body makes an adequate immune response to a pathogen to clear it and prevent the person from being infected with the same pathogen again.  

“That completely is different for HIV, because for reasons we still can't explain, the body does not make a good immune response against HIV,” he said. “And that's the reason why we never see clearance of the virus from the body of someone who's been infected spontaneously.” 

As advocates work to end the epidemic or wait for a cure, they continue to fight misconceptions. Among the most common is that HIV is a death sentence, and it is not, McCants-Pearsall said. Another is that if a person is HIV positive, it means “they did something wrong.”

“No one did anything wrong,” he said. “We have free choice. I can love who I want to love, how I want to love them, whenever I want to love them. There's no shame in that. I did nothing wrong.”

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