AIDS At 40: The epidemic emerges in Illinois
The first time Dr. Ross Slotten saw an AIDS patient in Chicago, scientists hadn’t yet settled on a name for the disease. The man the then-resident doctor saw was on a ventilator, suffering from a rare form of pneumonia.
It was 1982. That patient, a gay man with the dark purple splotches signifying Kaposi sarcoma, would soon die. He was the second patient identified in Illinois who had what was then known as GRID…Gay-Related Immune Deficiency.
Two years earlier, doctors began collecting information on cases of an immune system attacking disease affecting gay men. That was largely in San Francisco and New York. It wasn’t clear to doctors then, but there were also cases in Chicago — less than a dozen documented in the early years. But cases began growing exponentially.
“No one at that point would have predicted that this would have become … a worldwide phenomenon. There were sporadic cases. Obviously people were worried, but the magnitude of the problem didn't really become obvious until the mid to late ‘80s.” said Slotten, the author of Plague Years: A Doctor’s Journey Through The AIDS Crisis, which was published last year.
Dr. David Blatt created the city’s AIDS ward at a wing of (Advocate) Illinois Masonic Medical Center in Chicago with his now husband, Dr. David Moore.
“It wasn't so far from the coasts that we didn’t end up being pretty much in concert with this evolving phenomena where otherwise basically healthy young guys were suddenly getting very sick,” he said.
The average life span in the early days of AIDS was about a year, Blatt said. And it was a miserable year, marked by rampant diarrhea, trouble swallowing and horrible headaches.
“That was the bulk of what we're trying to do — to buy time for people. And then eventually, it was the patient's decision that it just wasn't worth it anymore,” he said. “So people would segue to just trying to be as comfortable as could be for whatever time there was.”
Blatt said at the peak, his AIDS Unit had 26 or 27 people die in a single month. That number continued to multiply. By the end of 2020, Illinois recorded a total of nearly 30,000 people with AIDS who have died. And there have been more than 700,000 deaths in the United States.
An era of stigma and loss
Danville native Arlen Miller lived in Washington, D.C. in the late 1980s/early ‘90s, where he watched his partner die of an AIDS-related brain tumor.
“I have a file folder full of obituaries of friends from that period. And this is by no means everyone, but I have 17 obituaries of friends who died of AIDS in the late 80s, early ‘90s,’’ said Miller, who now lives in Dallas with his husband. “And I know that's probably only about half of the people that I actually knew who died from AIDS.”
Slotten, who is gay, had an AIDS scare himself. A previous long-time partner developed the virus and would die. Blatt and Moore also had close friends die of AIDS, including patients with whom friendships developed. One of Dr. Moore’s first patients was a close friend, Goodman Theatre stage manager Tommy Biscotto.
“I think people either don't know or have forgotten what an awful a disease HIV can be. It's one thing to develop a fatal illness and die quickly,” Slotten said. “But this is almost like slow, slow torture. Some of the problems people develop are just horrendous.”
Kaposi sarcoma, a kind of skin cancer, usually occurs in older men for whom it is a slow, progressive disease.
“I had one patient who it took over his entire face,” the doctor said. ”It was just unbelievable. He was a very nice-looking man. And he was almost monstrous.”
Blatt estimates that he has treated thousands of HIV patients. He said early in the days of the epidemic, the stigma surrounding AIDS was especially intense and his patients faced prejudice, mistreatment and even violence.
“I know some of the nurses really had to deal with it even on the homefront, that parents or husbands really were kind of freaked out that their relative was working in the unit,’’ he said.
“But at the beginning, it really wasn't clear how this was spread. And again, it was a very high touch as well as high tech unit. I mean, people were really hugged. “
Lori Cannon is a Chicago AIDS activist. She told a story about about one woman she visited as a part of program she ran to deliver meals to AIDS patients.
‘’As I step in, I clutch her hand and she recoils from me. And she is shocked. She said,’ you touched me… You're not afraid to touch me,’ I said, ‘You're going to meet volunteers who will probably clutch your hand every time they're here. Is that okay with you?”
“’Oh, I love it. Nobody touches me,' and this poor woman every time she would step out her door, neighbors would throw stones at her. Now that was heartbreaking to hear,” Cannon said.
Marginalized people hit hardest
The experts say except for the fear of coming in contact with people with AIDS, it became clear that the majority of the general public seemed oblivious to the disease until actor Rock Hudson died of AIDS in 1985.
Many blamed the federal government for lack of action. It was not until 1985 that then-President Ronald Reagan mentioned the word AIDS for the first time publicly.
Initially, it appeared that AIDS merely affected gay men, as well as Haitian people and intravenous drug users. But those with expertise in the virus say the government paid little attention because the bulk of the patients were in marginalized groups.
Dr. Cathy Creticos, who once practiced with Blatt at Illinois Masonic, is now at the Howard Brown Health Center – the largest entity for the care of LGBTQ people in the Midwest. She recognized the stigma and shortage of government interest, too.
“This a group of people that were felt to be not necessarily expendable, but not the largest voting segment. These were marginalized people,’’ she said. “People who did not engender sympathy by anyone except, you know, Ryan White.” White was a teenager who had hemophilia and contracted HIV through blood transfusions. He was barred from attending his middle school.
Beyond the stigma, AIDS patients and their partners and families also faced heartbreak. Blatt gets choked up talking about it.
“I don't have kids, but it became clear that parents really aren't designed to outlive their kids,” he said.
He remembers a patient named David.
“Just a wonderful, wonderful guy,’’ Blatt said. “And his family, out of their so-called spiritual life, just couldn't have been more creepy in rejecting a family member. It was just heartbreaking to watch that happen.
“I can remember multiple conversations in the intensive care unit, with patients who their plan was to die rather than come out to their families … somebody in his 20s or 30s, to just deal with the rejection (or) even anticipate the rejection… saying I want to die, literally die, rather than come out to my family.”
A different time
Back in those days, it was terrifying to be a gay man.
Jim Pickett works with the AIDS Foundation of Chicago and is an HIV patient.
"I am a gay man. I came out in 1984. I saw a lot of death and destruction in my community, especially people who were just a little older than me,” said Pickett.
He said he will never forget his first HIV test. “I went to a clinic and then you waited for a month. And that was a very agonizing time.”
He tested positive in 1995.
“I really thought at the time, I had about 10 years to live because that was typical. People found out they had it, and the clock started ticking. It wasn't a matter of if. People got sick and most people died. That's really what I thought I had before me.”
But in a few years, researchers found that a cocktail of highly effective retroviral drugs changed the future for people with HIV.
Pickett had a lot of serious side effects that he said made him miserable. But he improved with a change in medications, and found his life’s work – advocating for people with HIV and AIDS.
Dr. Cathy Creticos said it’s important to remember some people literally died because they never got treatment.
“They were so terrified of having an HIV diagnosis in their family circle or their community that they, despite knowing that they were getting sick and needed to seek out care, they didn't,’’ she said.
This includes people from all walks of life.
“I had a professor of molecular biology at the University of Chicago, a a 39-year-old, who died really of stigma. It goes on to this day.’’
This is second in an occasional series on the AIDS pandemic, which doctors first identified in 1981.
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