When Chris Clason was diagnosed with HIV in early 1987, he went looking for a support group and came up short.
The majority of existing groups were tailored to those who had AIDS or ARC ( AIDS-related complex ) , those who were direly ill, or people who had been recently diagnosed and were in 'crisis mode.'
None of this fit for Clason. The former actor and comedian had come to terms with his diagnosis and was feeling healthy. He simply wanted the type of camaraderie and information sharing he'd only be able to receive from other HIV-positive individuals.
In a 1989 interview with the Chicago Tribune, Clason recounted his doctor's attitude: "If you're healthy, you're lucky. Go away and come back when you're really sick."
That wasn't good enough. On June 19, 1987, Clason and 16 others gathered in a living room to talk about their experiences with HIV, and the Test Positive Aware Network ( TPAN ) was born.
The oldest peer-led service provider in Chicago, TPAN devotes itself exclusively to HIV-related services such as counseling, advocacy, needle exchange and information dissemination. It also educates in the larger community to decrease stigma and increase HIV testing efforts.
"We were one of the first groups to form to serve all the people who are HIV impacted— [ from ] HIV-positive to the full range of AIDS," Clason said in 1993.
The group started out with small, biweekly meetings that often featured medical and legal experts as guest speakers. Topics included: how to draw up a will, how to navigate health and life insurance, and how to tell loved ones you're positive.
Before long, Clason's gatherings were drawing as many as 100 people. Biweekly changed to weekly, which would eventually pave the way for varied daily support groups.
In 1988, TPAN received a seed grant from the city of Chicago that allowed Clason to earn a salary as the organization's first executive director. By 1989, the group had its first paid staff member.
As the fledgling organization expanded, it never lost sight of its roots.
"Our whole philosophy has been a peer-led and peer-driven kind of focus," said Jeff Berry, TPAN's director of publications. Berry first joined TPAN in 1989 as a client and has been employed with the group since 1992.
"There was a family atmosphere," Berry said. "We were all in this struggle together, and we were all there to help support each other and exchange information. … It was how the community came together, rallied behind a specific cause, and tried to hold each other's hands to help one another through struggles that we were all going through at the same time."
TPAN regularly hosted parties, beach barbeques, camping trips—the works. It quickly became a vibrant social network and information hub for the city's HIV population.
"There is something about being in a room with a person with the same problem," former executive director Steven Wakefield told the Chicago Sun-Times in 1993. "You make a spiritual connection that is not explainable."
For those who couldn't be in the room, TPAN launched a monthly newsletter that shared personal stories, detailed the latest medical breakthroughs and explained any relevant political and social HIV-related developments.
TPA News, as it was called, would later pave the way for Positively Aware, an internationally distributed bimonthly magazine devoted to HIV treatment and health information. The acclaimed publication distills complicated medical information, making it easier for HIV-positive people to obtain proper care.
As the demand for group meetings and TPA News grew, TPAN moved from temporary spaces in the Rodde Center ( a now-defunct gay community center ) and the Sheil Park Fieldhouse to more permanent offices at 1317 W. Belmont.
Today the group is happily situated in Edgewater at 5537 N. Broadway. Programming has grown to include: prevention services, community outreach, a medical clinic, needle exchange, Positively Aware and HIV services directories.
In recent years, there's been a push to provide prevention and treatment to under-reached communities such as Black men who have sex with men, one of the populations most likely to contract HIV.
"As the science and medication have improved, [ people have wondered ] : If there's certain people who have gotten tested, gotten into medical care and are doing really, really well," Executive Director Bill Farrand said, "what's the barrier to all these other folks who aren't getting tested, or who know that they're positive but aren't engaging in care?"
Substance abuse and mental health counseling have been integrated into TPAN's programming. The group's offices and outreach teams provide free HIV testing throughout the city, and prevention specialists regularly visit schools, clubs, bathhouses and even private homes to distribute condoms and information packets.
"People might ask me to do that because they have friends and family who are affected by HIV," said Ed Kuras, prevention manager. "They want to know more so they can help."
Kuras estimates that in an average year TPAN tests about 1,600 people and distributes roughly 100,000 condoms and 40-50,000 information kits, which contain condoms and test center information.
Farrand hopes to reduce HIV stigma in coming years by partnering with local organizations.
"There's these pockets that are really, really important that we reach," he said. "We have to get more accustomed to working with different structures in society that we're not used to working with such as religious groups. It might make us uncomfortable because we feel like they hate us, but there are some amazing advocates from that side. … It's a lot of societal organizations that create the stigma."
As TPAN continues to grow—constantly tweaking programming to meet evolving needs—peer-to-peer support services remain at the heart of its mission. More than half of TPAN's employees are HIV-positive, Farrand said.
"I think that has been the strongest, most consistent and enduring trait of TPAN," Berry said. " [ It's ] contributed to our success, and it's why we're still here and why we're one of the first places people will come to … when they learn they're HIV-positive. They know they can talk to someone or be with other people who have been in that same situation and walked that same path and can help guide them through that process."
Most of the founders of TPAN, including Clason, have since died. The agency also experienced many other important losses, including the death of Executive Director Charles Clifton in 2004—the same year that Clason died. But TPAN's mission, still a vital one, continues on.
To learn more about TPAN, visit: www.tpan.org .
This story is part of the Local Reporting Initiative, supported in part by The Chicago Community Trust.
