Medications to successfully treat and prevent HIV infection have dramatically changed the outcomes faced by patients in the four decades since public health officials identified the first five documented cases of AIDS in June 1981.
But for those who lived through the tragic early days of the AIDS crisis, the memories remain haunting.
Alan Jones, who grew up in Westmoreland County, said that he remembers a conversation in the early 1980s at a gay bar in Greensburg when a friend asked if he’d heard about what was then sometimes called “the gay cancer.”
Jones said he dismissed the concern because it didn’t make sense that an illness would be striking gay men specifically.
“I remember saying, ‘Oh, this isn’t anything we have to worry about.’ I just thought it was really odd that there would be a disease that was only affecting gay men,” he said.
Jones said he wondered if, like Legionnaire’s disease – which was originally linked to bacteria in a drinking water system – there might be an environmental cause that had hit members of the gay community in New York.
But then AIDS began to hit in Pittsburgh, too, Jones said, recalling how he first learned that an acquaintance had died from AIDS.
“I was on a dance floor at the Pegasus in Pittsburgh, and my neighbor said to me, ‘Did you hear that Ricky died?’ ” Jones said. ”I just remember, I was dancing, still thinking like, ‘Oh, my God.’ ”
Jones joined the Pittsburgh AIDS Task Force, now Allies for Health and Wellbeing, as a caseworker in 1991.
AIDS claimed the lives of 160 of his clients, he said.
“It was like working for hospice,” he said. Clients on average lived about two years in the early ’90s, though because some clients didn’t seek services until the illness had progressed, some died within weeks of seeking help.
In all, AIDS had claimed the lives of 26,732 Pennsylvanians through 2019, according to the Department of Health.
In addition to clients, Jones estimated that at least seven or eight people he’d considered friends died of AIDS.
At the age of 65, he’s now preparing to retire from Allies and knows he lived through a historic tragedy.
“I feel like someone who survived Hiroshima or Pearl Harbor,” he said.
Treatment improved
Things improved gradually though by the mid-1990s as “cocktail” medical treatments began to become available,
HIV patients began to live longer and longer, Jones said.
“I have a friend who was actually near death at that time. I mean, I knew he was gonna be gone within a year, and the new meds came out, and he’s still alive today and working a job,” Jones said.
“After I was a caseworker, I started doing HIV testing, and outreach and education, I used to get really upset 20 years ago, when I would have to tell a young person, especially, but anybody who’s living with HIV, that they are HIV-positive.”
Now that medical treatment has improved so much, “I feel like I’m doing them a favor,” he said.
“Nowadays, a person regardless of their age bracket, a healthy person who becomes HIV positive today, if they monitor their health care, there’s no doubt in my mind that most people alive with HIV today will live to be older persons,” Jones said.
Treatment for HIV infection has become so effective that advocates have launched a public awareness campaign – “U=U: Undetectable equals Untransmittable” – to educate people that medication can drive down the virus counts in HIV patients so low that they can’t transmit the virus to others, said Kirsten Burkhart, executive director of AIDS Resource in Williamsport.
“I grew up in the 80s when it was on TV every day and people were wasting and dying, and it was terrifying,” Burkhart said. “The younger kids that work for me, they didn’t live through any of that, so they don’t really understand the extent to which it was a crisis, because now it really is manageable.”
AIDS Resource serves people in 10 counties in north-central Pennsylvania – Lycoming, Cameron, Centre, Clearfield, Clinton, Elk, McKean, Potter, Snyder, and Union counties – though most of its 180 active clients are in Lycoming and Centre counties, Burkhart said.
Along with improved treatment options, more recent advances prevent HIV infections in the first place.
The FDA in 2012 approved PrEP – pre-exposure prophylaxis, medication, which prevents HIV infection.
The number of HIV cases in Pennsylvania peaked in 1991 when 2,982 people were diagnosed with the virus, according to the state Department of Health.
2019 was the first year since 1985 that fewer than 1,000 people were diagnosed with HIV.
Even so, Pennsylvania had the ninth most HIV cases in 2019 – behind Florida, California, Texas, Georgia, New York, North Carolina, Illinois and New Jersey, according to the Kaiser Family Foundation. Florida had the most HIV cases in 2019, with 4,387.
While approximately 36,000 individuals are diagnosed and living with HIV, it is estimated that 5,140 individuals are unaware of their infection in Pennsylvania, according to the Department of Health.
While the AIDS crisis in the 1980s and 1990s hit the gay community hardest, and gay sex remains one of the leading causes of transmission, HIV isn’t limited to the gay community, state data shows.
In 2019, gay sex was the mode of transmission in 52% of the HIV cases diagnosed in Pennsylvania. Heterosexual contact was the mode of transmission in 22% of HIV cases in the state, that year. Intravenous drug use was the mode of transmission in 10% of the cases. In 3% of the HIV cases in 2019, the patients had engaged in both gay sex and intravenous drug use, according to the Department of Health. The state’s HIV report doesn’t explain how the other 13% of patients got HIV.
Problems in rural areas
The Department of Health’s data shows that HIV cases have been detected in every county in Pennsylvania, with the exception of Cameron County.
With treatment and prevention available, “the bigger issue really is the stigma and dealing with, you know, the hatred from family or friends or losing your job,” Burkhart said.
Patients living in rural areas may also struggle to get access to the medical care that’s available in the cities, said Mary Bockovich, chief operating officer for Allies for Health and Wellbeing.
“But the hope is that, you know, with transportation assistance that is provided through things like the Ryan White Care Act, people can access treatment, people can access transportation to get to treatment,” she said. In addition to Allegheny County, Allies for Health and Wellbeing serves clients in 10 other southwestern Pennsylvania counties – Armstrong, Beaver, Butler, Cambria, Fayette, Greene, Indiana, Somerset, Washington and Westmoreland.
Testing and convincing people to get tested remains a challenge, Brockovich said.
“The CDC recommends that if you use injection drugs, or if you’re sexually active, that you get tested for HIV once a year, and I think that’s still important. You know, people should know and take control of their sexual health and, and there’s nothing stigmatizing about the test,” she said.
Jones said that people who don’t get tested put themselves at risk for not getting treatment as soon as possible and they risk transmitting the virus to others.
John Finnerty is based in Harrisburg and covers state government and politics. Follow him on Twitter @CNHIPA.
