20 Years on the Edge

Twenty years ago, in June 1987, a group of 16 gay men met in Chris Clason’s living room out of a need to give and receive emotional support—to speak to others who were dealing with the same fear of the unknown, once called GRID and more recently known as HIV/AIDS. These brave men formed a group to give and receive support, share ideas and thoughts, and to stem the tide of fear, prejudice and lack of knowledge that existed—at a time when there was little to no information, and no available treatments. They gathered to discuss potential treatment options such as meditation, acupuncture, aspirin therapy, and peach pit infusions. They came together to be there for each other when no one else would, refusing to allow themselves to be seen as “victims” and determined to fight, in whatever way they could, the destruction by this disease of their bodies, their community and their lives. Building on the model of peer-led, peer-run support and empowerment, Test Positive Aware Network (TPAN) was born.

As word of TPAN and its support services grew, an office was opened and a safe space was created for those who had HIV but had not received a medical diagnosis of AIDS. Until the Ryan White CARE Act was passed several years later, only those who received a medical diagnosis of AIDS were eligible to receive services from local community-based organizations. Through small grants and individual donations, TPAN became a resource and a refuge, a place to find information and support, services and friends. And, as medications were emerging that were helping to slow the progress of the virus, the number of people TPAN served continued to grow.

As the months, then years passed, TPAN primarily continued to serve gay white men on Chicago’s north side, providing social opportunities in the form of a weekly HIV-positive social at a local bar, a series of cutting-edge, peer-led support groups that focused on HIV basics, the more advanced Beyond Basics, and a local one-page newsletter that covered potential treatments in the pipeline, blurbs on research, and tips on how to stay healthy.

Though the majority of TPAN’s clients were still gay white men, it soon became clear that HIV is an equal-opportunity infector. From that original group of 16, today TPAN has expanded to serve the larger community. HIV went from being the “gay disease” to the disease of IV drug users, straight men, women, and children, especially in communities of color and those gripped in economic hardship.

Responding to this broader client base and the demand for broader services, TPAN developed many new cutting-edge support groups, information forums, and our innovative TEAM program, an 18-hour course that provides intensive instruction on HIV and wellness that every HIV-positive person or caregiver should know. Additionally, responding to the looming threat of federal cutbacks in Ryan White and other HIV funding, TPAN expanded its development department to locate new sources of funding to fuel our programs and support our mission.

Why is it that we all seem to know that HIV and AIDS is not over, yet our government thinks it is? Fortunately, we know better. Substance abuse is not going away. Sex, and the desire to have it, is not going away. And HIV/AIDS is not going away.

And so, TPAN is still here, leading the fight against HIV until we are no longer needed. Now, 20 years into the fight against HIV, TPAN has continued to expand its services, despite federal and local government cutbacks. We are reaching out into the west and south side of Chicago and its suburbs, partnering with other organizations to reach an even larger group of people who need our programs. We are currently serving over 11,500 individuals per year, and our one-page “newsletter” has evolved into Positively Aware, the only nationwide treatment education journal produced by an AIDS service organization, reaching over 75,000 readers each issue. Moreover, in early 2007, TPAN has expanded into HIV prevention services, providing approximately 200 HIV tests per month, and we’re getting ready to launch a new HIV prevention social marketing campaign.

But despite our progress, we face many challenges in our future. We must find innovative methods to keep our programs funded. We must address the pandemic at home and abroad. We must be politically proactive and participate in electing leaders who are not blinded by dogma, or limited by ignorance. We must adapt to the changing populations of people who are living with the virus. We must continue to break down stereotypes of HIV phobia, race, gender, and sexuality. We must continue to be willing to speak the truth.

Now is the time for TPAN to trumpet its commitment to meeting those challenges. As I look around TPAN and out in the greater community, I see many who have been frontline warriors since the beginning and I am grateful for the path they paved for us. I see an extremely dedicated and energetic staff who do the work every day. I see countless committed volunteers without whom we would not be able to keep our doors open.

And, I see hope. Hope that one day our services won’t be needed. I don’t know what the next 20 years will bring but I promise you this, TPAN will be ready. TPAN will be here for whoever needs us, for as long as the need exists. Like you, we will survive.

Be well,

Rick Bejlovec
Executive Director