Counselor recalls HIV/AIDS epidemic
June marks 40 years since 1st reported cases
Before Alan Jones got involved in Allies for Health + Wellbeing, a nonprofit dedicated to supporting people who have HIV and AIDS, he believed the disease was controllable, with only a few cases popping up in New York City in the early 1980s.
“The irony of it all is, at the very beginning, I didn’t think we had anything to worry about,” said Mr. Jones, a senior health advocate for Allies. “I just thought it was really odd that there was this disease that only seemed to affect
gay men in New York City, and I figured that they were more exposed to something, not that there was this disease out there.”
With this month’s commemoration of the 40th anniversary of what became the HIV and AIDS epidemic, and Mr. Jones’ 30th anniversary with Allies, they both have continued to fight to help people who suffer from HIV and AIDS, even as the media and general public have moved on from one of the most serious public health challenges in recent history.
On June 5, 1981, the United States Centers for Disease Control and Prevention reported in their Morbidity and Mortality Weekly Report the cases of five healthy gay males in Los Angeles who suddenly developed a rare form of pneumonia. It became known as acquired immunodeficiency syndrome, or AIDS, a disease formed from the chronic effects of HIV, or human immunodeficiency virus.
Over the years, HIV and AIDS have taken the lives of people of all races, sexualities and ages, while more than 38 million people globally are living with HIV today. With the development of medicine and preventative measures, such as pre-exposure prophylaxis, or PrEP, the HIV/ AIDS epidemic is prevalent, though not the same as it was before.
During the 40 years of progress toward longer, healthier lives, Mr. Jones has devoted 30 years to support those diagnosed with HIV and AIDS — and their loved ones.
Started in 1985 as the Pittsburgh AIDS Task Force, the agency, now known as Allies, offers a legal advocacy program to fight discriminatory treatment, provides support for those diagnosed with HIV and AIDS, and organizes outreach programs and testing opportunities.
Mr. Jones joined the agency on Penn Avenue in East Liberty as a volunteer in 1990 and became a staff member in 1991 as a caseworker dedicated to HIV and AIDS outreach.
“I had three different friends who had it 30 years ago, and all died within the year,” Mr. Jones said. “In the very beginning, there was so much discrimination around it. People didn’t know what caused it or how it spread. Of course, as a gay man myself, I think I felt more touched by the epidemic, but we would learn in a short time it wasn’t just a gay man’s disease.”
Ironically, Mr. Jones said he felt there was nothing to worry about when the first few cases popped up in the 1980s, but shortly after joining Allies, he realized that with over 102 clients at one time, this was more than just an odd occurrence in New York.
“I saw people living and dying with AIDS for nine years after [starting],” he said. “I lost over 160 of my own clients in that time and they were as young as 20. When I started, someone with an AIDS diagnosis had a lifespan of 18 to 24 months. It went from being a death sentence, literally, to now with new medications and treatment people are living with this disease.”
Even with the constant progress toward a treatable disease, the journey was difficult for Mr. Jones while dealing with the negatives and the unknown.
“I’m a real people person, so there were a lot of times I felt very connected to some of my clients,” he said. “I remember one time I realized I had lost 13 of my clients in seven weeks — about two a week — and at least two of them I had known had committed suicide. I understood why. When I look back at that very low period, I saw no end to this disease.”
Mr. Jones, who is 65, continued in casework until he moved on to become a specialist and senior health advocate at Allies. He now performs testing for HIV, hepatitis C and other STIs within the office and at outreach events.
“He was able to recognize some of the dangers and pitfalls associated with [casework],” said Matthew Ometz, director of the pro bono legal network at Allies, who has worked with Mr. Jones for 25 years. “Rather than just leaving the mission altogether, because he didn’t want to see death anymore, he recognized that he could still be active in the program. That’s growth: to be able to recognize self-care, but to still be able to continue on doing something he really loved to do.”
In honor of Mr. Jones’ dedication to the agency, Allies hosted a milestone celebration for him on June 4. Mr. Ometz and other co- workers agree that Mr. Jones is a source of joy for clients and coworkers alike, even during the dark times.
“Whenever he was working in the case management side, he was there during the real awful days when clients were dying right and left,” Mr. Ometz said. “He’s very good at just listening and just being there for clients. If you are having a bad day or just need somebody to kind of make you laugh or bring you up, he’s the kind of person you go to.”
When working through all of the hardship that comes with being a staff member at Allies, Mr. Jones believes the biggest lesson to be learned is to keep a strong faith in knowing that things will work out.
Mr. Jones has seen progress not only with new medication and public awareness and acceptance, but also with expanding the agency to offer housing and other outreach services to those diagnosed.
And as COVID-19 restrictions eased up just in time for the 40th anniversary of the epidemic, Mr. Jones and the rest of Allies are excited to get back to the normal routine — just as those living with HIV and AIDS are excited to progress toward normal lives.
“I’ve seen so many changes, and just the fact that, you know, we have clients now who are living with HIV that do things: that go to college or that get married, to me is so nice seeing it come full circle,” Mr. Jones said.
Though the disease is no longer the death sentence it was, people continue to die every year from it. According to HIV. gov’s global statistics, a total of 690,000 people died from AIDS-related illnesses in 2019, although that is down from 1.2 million global deaths in 2010.
The public has largely forgotten about the disease, according to Mr. Ometz, who wants to bring more attention to the issue through education and outreach.
“I think that where we were in the ’80s and ‘90s, things have considerably turned around,” Mr. Ometz said. “In the ’90s, the death rate was still high, so the news was constantly covering it. Now you’re lucky if you see anything about HIV or AIDS on the news. Anything you can get to bring it back into people’s minds that it’s still happening and it’s still out there, it still needs support.”
“I’ve seen so many changes, and just the fact that, you know, we have clients now who are living with HIV that do things: that go to college or that get married, to me is so nice seeing it come full circle.”
— Alan Jones, health advocate for Allies for Health + Wellbeing