World AIDS Day is a time to remember the early days of the epidemic

Dec 2, 2019

As World AIDS Day is remembered, so do survivors remember the early days of the AIDS epidemic.

Credit National Institutes of Health

"We could give them prayer and try to get them to ease them into their transition," said Rev. James Lewis. "We had trained ourselves just to give people comfort and prepare them to die, get them to give their things away and to make out wills."

In the worst of the AIDS crisis, it was people like Rev. Lewis who had to deal with it. He is the long-serving director of pastoral and spiritual care at Erie County Medical Center, home of the Immunodeficiency Clinic. The minister had to deal with families torn by drugs and illnesses.

"What we would call a MICA patient, a mentally incompetent substance abuser, they would think that they didn't have nobody that loved them. Nobody cared about them. They were all by themselves and they were only hurting themselves," Lewis said. "But when they would die, the masses of people that would come forward, crying and weeping, saying they just dropped out of our lives."

Some people survived the worst years, when hundreds died locally of AIDS, before medications began to help patients survive.

"It wasn't even the doctor, it was the receptionist. She just came out and she's like, in front of everybody and said, 'You're positive,'" remembers Irwin Sommerville. "I was just numb because I really didn't know what positive meant at that time. I just was like, I was so shocked at the way she came out and said it in front of everybody and I was like, 'Wow!'"

As head of pastoral care at Erie County Medical Center, Rev. James Lewis has been on the front lines of the AIDS epidemic.
Credit Miracle Missions

Sommerville received that news 37 years ago. During an interview at ECMC, he told of what being positive once was, before AZT and other new treatments came out. Sommerville remembers the years he spent after diagnosis, diving into a bottle in local bars until he saw too many ghosts along the bar, so he retreated to alcoholic drinking at home.

"It was really scary. It was really scary, not knowing if I'm next. That's the thought that used to be in my mind. Am I next? How long? Or what am I doing that I'm still here?," he said. "People were just dropping like flies. They were just dropping like flies."

There was also the weeks of waiting until the test results could come back from Albany, perhaps as people watched friends die from the disease.

"It was just a horrible time and then, if you were infected, it was a death sentence," said Pastor Lewis.

Lewis remembers a drug house on Dodge Street where 10 customers were infected from needle exchanges. All died. That is why he and another preacher, Rev. Arthur Boyd, became very proactive.

"That was trying to protect people. That's when we fought so hard to get needle exchanges and push for condom use," Lewis said. "I used to stand out on Genesee Street in the early '90s and pass out cookies and condoms so prostitutes would talk to me."

Then it all changed, as new medications began to come into the healthcare scene and life began to change for the infected. It isn't just that meds are better and often fewer than in the "bad years," but medical breakthroughs allowed HIV-positive people to lead fairly normal lives, with viral counts pushed down so far they are undetectable and they can't transmit the virus to others.

Lewis said it was an abrupt turn.

"Then, when it changed, we had to teach them how to live with HIV and AIDS, because there was a prolonging of their lives and how we're turning into housing specialists," he said.

On Tuesday, WBFO looks at what is going on now, with life for those infected changing from a death sentence to a chronic condition.