During the 1980s AIDS crisis, many Chicagoans’ lives were cruelly curtailed.
For those diagnosed, the options were limited for a disease that was considered a death sentence. Since 1981, 12,000 people in the city have died from HIV-related causes, according to the AIDS Foundation of Chicago.
Recent news out of London that a second person appeared to be clear of HIV after receiving a stem cell transplant during cancer treatment may mean that the search for a cure is closer.
For some Chicagoans, however, hearing the news is a bittersweet reminder of friends and family members for whom a potential cure came decades too late.
“It brought a lot of sadness to my heart because of so many people we lost,” said Modesto Tico Valle, chief executive officer of the Center on Halsted. “Sadness but also hope was my reaction, like, ‘Oh wow, we finally think we can end this epidemic.’”
Valle and two others who lived through the AIDS crisis in Chicago describe what the potential for a cure means to them.
“That they may live to see a cure, it’s a beautiful, beautiful thing”
When Valle thinks of the possibility of a cure, he thinks of his father, who died from complications related to AIDS in 1995. They never spoke of how he contracted the disease, he said.
He thinks of his friend who, after diagnosis, asked Valle, “When my time comes, will you be there for me?”
“That was one person,” he said, “and then there were so many others.”
He thinks of Center on Halsted seniors, who have survived 30 years living with HIV. “They’re still here, and that they may live to see a cure, it’s a beautiful, beautiful thing.”
And he thinks of his partner, Jeffrey Voorhees, who loved the beach — they’d drive all night to spend a weekend in Miami — and was “the fun and joy in my life,” he said. Like many, when Voorhees was diagnosed in 1991, his life changed overnight. Within months he was gone, the end filled with lesions and losing his ability to walk and pneumonia. Voorhees was 32.
“We always talked about, if you go, let me know you’re OK somehow,” Valle said.
A year after Voorhees’ death, the phone rang. Valle answered. No one was on the other end. He looked at the clock. It was 1 a.m. “It dawned on me — it was the moment, the day, the second he had died.” He remembers thinking, “He’s letting me know he’s OK.”
Despite the darkness, that time was also, he emphasized, a time of hope and enormous help. Friends came together for one another and decided who would go to what home, watch whose cat and sit by which hospital bed.
“Chicago has a lot of heart,” said Valle, who also founded the Chicago chapter of the AIDS Memorial Quilt, something he said created beauty out of ugliness.
He is hopeful this news increases awareness. Because medications like PrEP, a pill that can lower a person’s chances of contracting HIV, are only part of a goal to slash diagnoses by 2030.
Each week at the Center on Halsted, clients are tested and told of positive results. Valle says he sees 18-year-olds receiving those results. About 23,000 Chicagoans are estimated to be living with HIV, according to a 2016 Health Department report. People ages 20 to 29 were the most frequently diagnosed.
“I’m glad there’s hope,” Valle said, “but we also have to be responsible to make sure we stay healthy.”
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“It seemed so far off, and now it’s just a tad closer”
When news broke about the second person found to be HIV-free, many of Kathye Gorosh’s friends reached out expecting excitement.
But many like Gorosh, who has worked for years in AIDS advocacy, had a more tempered reaction.
“I think what it mostly does is give hope that maybe there could be a cure someday, a full-fledged cure available to most,” said Gorosh, senior vice president of strategy and business development at the AIDS Foundation of Chicago. “What was really encouraging is that it is possible, and that it’s just sort of moved us along a little bit.”
To her this is one step, albeit an encouraging one, in a decadeslong journey.
She remembers when the disease was new and unnamed. The Centers for Disease Control and Prevention’s first mention of it was in 1981, noting a rare lung infection in five young, previously healthy gay men. Two had already died by the time the report was published.
Later it had a name: acquired immunodeficiency syndrome, or AIDS. She remembers when the first test emerged in 1985, and two years later, the first medication. In 1987, the FDA approved AZT, the first drug approved for AIDS treatment.
“When there first was AZT, one medication, people thought, ‘Will there ever be more?’ And now there’s a slew of them. So, who would have thought that?” she said. “Each little step is an increment towards hopefully a cure, but in the meantime, a lot of people are already infected.”
She remembers the fight to get funding to study and treat a disease that was killing people nearly as fast as they were diagnosed.
And she remembers in 1985 when actor Rock Hudson announced he had AIDS and died weeks later, and in 1991 when basketball star Magic Johnson told the world he was HIV-positive, the celebrity of each adding enormous awareness.
Through the years, she has watched HIV become a disease people can manage. She sees issues previously unimaginable, like securing resources for seniors living with HIV.
Perhaps eventually a cure for all will be available. In the meantime, she and others want to ensure those living with the disease have access to care and resources.
“It seemed so far off, and now it’s just a tad closer,” she said. “I think you have to be realistic in between being optimistic, and do what you can for today.”
“They are the latest generation in a long line of people who paid a very great price”
Victor Salvo said he was surprised to find himself underwhelmed by the news of a second person being cleared of HIV.
It’s a very specific case, he noted, and not ultimately a treatment accessible to everyone. He had hoped the activism of his youth would have led to something stronger by now.
When Salvo speaks to students through his work as founder of The Legacy Project, the Lakeview outdoor museum walk presenting LGBT history, they sometimes have no idea what he is talking about.
Once, an adviser with a student group leaned in and whispered, “Could you explain to them what AIDS is?”
It bothers him that they are uninformed. But it also bothers him they are unaware of the decades of activism that led to funding and treatment — not to mention social service organizations and work that paved the road to things like marriage equality.
“There was absolutely no understanding of what the community had done to build everything that these kids took for granted so seamlessly, that they didn’t have to know about it,” he said.
He first heard about what was then known as “the gay cancer” in the early 1980s on a date.
“It didn’t become real to me for a number of years,” he said.
But by the time he was 30, six friends had died.
“It didn’t feel like an illness. It felt like a plague,” he said. “It was impossible to process so many beautiful, young, vital men basically being ravaged by an illness that made them look like they were 80 or 90 years old.”
He remembers watching the mother of a sick friend stroke her son’s forehead while wearing rubber gloves and a mask.
Watching friends die as funding and awareness seemed nonexistent transformed him and his friends into activists, he said. He helped organize Chicagoans to travel to the 1987 march on Washington that demanded an end to discrimination and more money for AIDS research and treatment.
“History was unfolding around us,” he said. “It forced a solidarity that had not existed before.”
For all these reasons, he wants to maintain memories and legacies for younger generations.
“I want them to be proud,” he said. “I want them to have a sense of the fact that they are the latest generation in a long line of people who paid a very great price.”
abowen@chicagotribune.com
Twitter @byalisonbowen
