Despite medical breakthroughs, HIV stigma is still killing West Virginians

At the intersection of the overdose crisis and most concerning HIV outbreak in the nation, there is still no cure for stigma.

Amid a massive surge in HIV cases, West Virginia lawmakers chose to outlaw harm reduction programs. Illustrations by Jamie Miller

June. 15, 2022 • Written by Kyle Vass

When the doctor came in to read the results of April Dawn’s HIV test, she said she didn’t want to know.

“I said, ‘I already know that I have it. It’s inevitable that I got it. There’s no way that I can’t have it because I’ve been using after everybody,’” Dawn said. 

Two months before her hospital visit, Charleston forced its sterile syringe program to close. People didn’t need to share needles when it was operational. Now, Dawn said sharing became the norm. “All these people just started popping up with [HIV].”

Dawn had trouble quitting heroin, but, she began to take medication for HIV as soon as she learned she was positive. Despite her own internal conflict about using drugs, she split her time on the streets between looking for and using drugs and helping steer fellow users away from the virus.

“I was out there in the streets, killing people’s buzzes,” she said.

Equipped with her own syringes that she refused to share, Dawn carried HIV test kits and a message: get tested before it’s too late. One time, when she and a friend were using drugs together, she convinced him to take a rapid HIV test. She swabbed his mouth and they waited in silence.

After a few moments, “He looked at me with this look in his face and just said, ‘I got it, don’t I?’ I was like, ‘Yeah, but it’s going to be alright.’”

Dawn and other people who inject drugs resorted to sharing syringes after the city’s former mayor, Danny Jones, forced the local health department to shut down its sterile syringe program. She and her friend are two of 137 people in their county to test positive since the program shuttered in 2018.

Stigma was the key component in shutting down the syringe program. Jones leveraged stereotypes about unsheltered people and people who inject drugs interchangeably on his AM talk radio show. On air and in the press, he called the program “a needle mill for junkies,” accusing it of “enabling” drug use but offered no evidence for the claim. This disinformation campaign came at a time when Jones was overseeing a $100 million renovation of the Civic Center across the street from the health department where the syringe program operated. Unshy about the connection, he held up pictures of the two buildings at a public meeting, saying, “We can have this. Or, we can have this.”

In the years following the shutdown, Charleston experienced what the U.S. Centers for Disease Control and Prevention dubbed the “most concerning HIV outbreak in the nation.” The transmission rate for Charleston and its surrounding counties would go on to be twice as high as that of New York City.

The shutdown created a void at a time when rural HIV rates were skyrocketing from injection drug use. To fill the gap, a volunteer-run program called SOAR (Solutions Oriented Addiction Recovery) began distributing sterile syringes – a practice the CDC says cuts HIV transmission rates in half. But the City of Charleston shut that program down, too. This city passed an ordinance criminalizing the practice.

ACLU-WV represented SOAR after sensationalist media reports accused the organization of breaking state and local laws, an allegation city officials later confirmed was inaccurate.

Rather than heed the guidance of the nation’s top experts in infectious diseases, all but one city council member voted to criminalize syringe distribution. The city chose to double down on the plan that failed them three years prior.

After years of disregarding federal guidelines and watching HIV rates increase, the state requested a CDC emergency response team to assess the outbreak. The CDC’s top recommendation: increase access to “sterile syringes and other injection equipment through comprehensive harm reduction services.” CDC’s second recommendation was to increase HIV testing through “non-traditional outreach strategies,” such as “distributing HIV self-tests through community outreach.”   

Dawn was following CDC recommendations more closely than her elected leaders without even knowing it. “I was going around trap houses giving out boxes of HIV tests.” After she found out she was positive, she became motivated to help others. Amid a culture of stigma, Dawn prioritized caring for people over the opinions of others.

The lack of compassion and regard for epidemiological expertise went beyond elected officials. The CDC assessment found healthcare providers in the area, too, were fostering a culture of stigma. “The most prominent barrier to medical services among people who use drugs was their strong negative views towards hospitals due to previous experiences of injection drug use stigma and discrimination by hospital providers.”

The report was in step with Dawn’s lived experiences. “They treat you like shit,” she said. She recalled an episode where she was brought to the hospital via ambulance: “There was a nurse behind me. And she asked me if I had any health issues. I told her I was positive. The nurse yelled to everyone in ear shot, ‘This one’s got HIV! Be careful!’”

Robin Pollini, a West Virginia University epidemiologist who has personally tested many of the people in the state living with HIV, said the lack of a coordinated response statewide is rooted in stigma. “People are very reluctant to engage in the healthcare system, almost at all, because they, in the past, have been treated very poorly or have reason to expect that they will be treated very poorly.”

Pollini said when health programs are designed for a group of people without that group’s input, the inevitable result is failure. “We’ve learned that these are bad people doing a bad thing. And so, they get treated differently.”

Many experts recognize the most effective way to engage such a stigmatized population is through harm reduction: the practice of meeting people where they are, talking with them about their own desired health outcomes and providing them what they need to be safe: clean supplies for using drugs, medical care and, above all, compassion.

The origin story of HIV, more than any other infectious disease, is rooted in stigma. Homophobia was so commonplace that then-President of the United States Ronald Reagan would not even publicly acknowledge the existence of the disease for the first four years of the epidemic (although his press secretary openly joked about it in front of reporters.)

Jeanne Peters serves on the board of ACLU-WV and is the president of Out MOV.

ACLU-WV board member Jeanne Peters remembers those days all too well. Peters was part of ACT UP (AIDS Coalition to Unleash Power) and sees many similarities in today’s epidemic. “Today, as in the 1980s, people who are affected by HIV are predominantly members of marginalized communities and therefore more likely to be overlooked,” she said. “As long as HIV/AIDS affects people at the margins, it will remain a subject government officials can ignore. Tragically, elected officials respond most rapidly to those who can help them secure and retain their offices. And people with HIV are largely not big money donors.”

Living with AIDS at that time meant abuse and violence. For many people from small towns, it also meant not being able to come home to see your family in your final days.  

In 1987, Mike Sisco, a man living with AIDS, became the object of national attention because he went for a swim in the community pool in his hometown of Williamson, West Virginia. After testing positive, Sisco had moved back to his family’s home.

Sitting indoors without air conditioning on a 97-degree summer day, one of his sisters suggested they go swimming. In an interview at the time, Sisco said as soon as he set foot in the water, the pool emptied out with people running away, “like in those science fiction movies where Godzilla walks into the street.”

Later that day, the pool was shut down, drained and disinfected. The Associated Press picked up the story: “City pool closed after swim by AIDS victim.”

The ignorance and homophobia on display drew the attention of Oprah Winfrey. Her show traveled to Williamson with an HIV expert from CDC to host a townhall-style discussion about HIV. Sisco, living with a terminal illness, sat on national television while his neighbors lobbed insults and slurs at him.

One especially enraged man drew resounding applause when he stood up, began pointing at Sisco and exclaimed, “This is a disease of nature! Nature will take care of something that is wrong. It’ll eradicate it. If you put them all together without any women, they would be extinct from the face of the earth!”

Twenty-eight years after Sisco’s death, that same individual is now a Charleston-based activist who has shifted his anger from gay men to another group disproportionately affect by HIV: people who use drugs. He is the moderator of a private, 4,500-person social media group that posts pictures of unsuspecting people on the streets for its members to ridicule.

Dr. Christine Teague, who heads an HIV treatment and prevention taskforce with the Ryan White Program at Charleston Area Medical Center, says the link between homophobia and a hatred for people who use drugs makes tackling HIV in the 21st century even more complicated.  

“People still tend to associate HIV just with gay sex. The stigma still plays out today even in the injection drug-use population,” she said, adding that stigma will not subside until puritanical attitudes about sex do.

In some parts of the state, her program has had to integrate with other clinics so that people do not associate one location with being “the HIV office” and will be more likely to get treatment. People fear going to that location, Teague said, and being labeled as HIV-positive, gay, a drug-user, or some mixture of the three.

“I have said for 30 years that stigma is our biggest barrier. Nothing has really changed. I mean, the only thing you can do is just talk to people about it,” she said.

Pollini, the WVU epidemiologist, says this stigma has come full circle with people contracting HIV from drug use.

The burden of breaking through HIV stigma and providing prevention and treatment has fallen on underfunded and over-regulated harm reduction programs and nonprofits, she said. “Without support from state, county, and municipal governments, these programs cannot be expected to make headway in the battle against HIV.”

“West Virginia is an example where we know what works. We can lead with compassion and empathy and try to make it as easy as possible to provide these services. Or, we can lead with policies that seek to penalize people for their drug use.”