AIDS awareness and activism has a long and important history here in Champaign-Urbana, thanks in particular to the work of Joan Lathrap (who just recently passed) and Julie Pryde at the Champaign-Urbana Public Health District, and Jerry Carden, founder of the Gay Community AIDS Project which later became the Greater Community AIDS Project (GCAP). You can read more about that history in an article we published just a few years ago, in anticipation of World AIDS Day. This year’s day of recognition is Friday, December 1st, and will be acknowledged with an event organized by GCAP at Spurlock Museum of World Cultures. Darya Shahgheibi recently joined GCAP as their Executive Director, and I reached out to find out more about how HIV and AIDS continue to impact our community, even in this time where medical advancement has changed the landscape of the disease.
This interview has been edited for length and clarity.
Smile Politely: Can you share a bit about your background, and how you came to be Executive Director at GCAP? I know you’ve just recently taken the reins there.
Darya Shahgheibi: I’ve been living in Champaign-Urbana for about ten years now. I came here initially as an undergrad, and I’ve been working directly with people living with HIV and AIDS since 2019. In 2019 I started working at Uniting Pride of Champaign County, first as a program assistant, then I moved into the programming director role. That’s where I first saw a need in our community for services for people who were homeless and LGBTQ+. We had people calling us saying “I need help. I’m [HIV] positive, I have nowhere to go, I Googled ‘help near me’ and UP Center came up.” That was when I started working with the homeless LGBTQ working group, which is now part of our local continuum of care. Then I moved out of that job into a care coordinator/counselor job at the Champaign-Urbana Public Health Department, specifically working with people with HIV and AIDS. Part of my job there was to make sure they had their medication, and we relied on GCAP a lot for people who needed other things like transportation, or they needed an ID so they could get a job. Then, GCAP reached out to me and said they had an open position, and asked if I’d like this job.
SP: In the general public, HIV/AIDS is not something that is on people’s minds the way it was in the 80s and 90s, during the height of the crisis. What should we know about living with HIV/AIDS now, in 2023? What does that look like?
Shahgheibi: People think that HIV and AIDS isn’t here anymore, and it still very much is. From recent CDC data, HIV was the eighth leading cause of death for Black men, and the tenth for Black women aged 25 to 44. That’s my age. That directly matches my client caseload at CUPHD. When we think of HIV and AIDS, we think of it as a gay issue, and that stereotype influences who gets on PrEP. PrEP is a medication that you take to prevent HIV. It [stands for] pre-exposure prophylaxis. One pill, once a day. You can get this medication for free at the health department. But when we see who is prescribed PrEP, it’s typically white gay men. When we look at who needs PrEP, that’s not necessarily who we see. There are these drastic racial disparities, and a lot of it is because of how we’re talking about it. We still have these stereotypes that it’s “the gay cancer.” People are diagnosed with HIV and they are saying “I thought that only gay people get this.” My goal is to make people aware that this is still here, it’s something you can prevent. You can take one medication, every day, to prevent yourself from having this lifelong disease.
SP: Do you still see stigma surrounding HIV and AIDS in your work?
Shahgheibi: Yes, 100 percent. HIV and AIDS still does disproportionately affect the LGBTQ+ community, and we’re also seeing it disproportionately affect Black and Hispanic people, specifically women. There is still a stigma and it can cause violence. A lot of times when we see people displaced, it’s because of domestic violence. Illinois is, thankfully, a state where HIV is decriminalized. In other states it can be a felony if you don’t share your status, whether you are detectable or undetectable.
SP: Can you talk a bit about being detectable versus undetectable?
Shahgheibi: Undetectable equals not transmissible. You can become undetectable if you take your medication at the same time every day. It means you have a viral load under 200 [viral copies per milliliter of blood]. People who are undetectable still have HIV, just not enough of the virus in them to be able to transmit it. The medication is suppressing the virus in their body.
When they are undetectable, their CD4 [T-cells or helper cells] count is increased. It’s a sign of your immune system [working]. If your immune system is good, you are in HIV status, not AIDS. If I see someone whose CD4 is consistently below 500, it’s an AIDS diagnosis. Unfortunately a lot of my older clients have AIDS diagnoses because they were living during the AIDS epidemic.
SP: When there were not all the tools available.
Shahgheibi: Now we have the medication available to help people live into their 90s with AIDS. It’s not a death sentence if you take your medication everyday as prescribed.
SP: I’m sure the work of GCAP has evolved since it formed in the 80s. What sort of needs are your organization focusing on now, in this era of HIV and AIDS?
Shahgheibi: Recently I applied for a Healing Illinois grant, to specifically address the racial inequalities we’re seeing, and to do more outreach and events. I’m trying to introduce things that not only help people living with HIV and AIDS, but who are [most likely to be] affected by HIV and AIDS, so that people can know their status — positive or negative — get tested, and get prevention.
We have our transitional housing, but we also do so much emergency assistance. If you look at our demographic data, for whom we are giving assistance, it is mostly BIPOC individuals. I would like to get to the point where we are preventing them from needing emergency financial assistance. That’s the point of the Healing Illinois grant. How can we help these communities heal from the harm that’s been done — by Reagan, by people not having access to the medication they need to survive, or by not having access to the prevention they need?
SP: Do you have an idea about how many people you serve?
Shahgheibi: Currently our transitional housing is at capacity, and it’s the first time it’s been that way in a long time.
SP: How does someone get assigned a spot there?
Shahgheibi: People are referred by their case manager at public health, or they can be referred by rapid emergency housing, like STRIDES.
SP: What happens when someone moves into transitional housing?
Shahgheibi: We have an amazing client services representative who is a retired provider at Carle. She meets with them and makes sure they are physically healthy enough to enter the facility. If we have someone who has a suppressed immune system, we want to make sure they are not bringing TB or something like that. We do a general screening to find out their needs and their housing goals and make a treatment plan. They regularly meet with their housing care coordinator, they budget, and we have monthly client services meetings. Soon we’re going to be introducing a therapy dog in coordination with Elliott Counseling Services. One of the problems we see in housing facilities like this is isolation, so we try to bring joy in any way we can. Clients stay anywhere from six months to two years.
SP: This is something that’s been a part of GCAP in some way since the beginning, right?
Shahgheibi: Yes. The house was built in 1985, and it’s been there ever since.
SP: What is World AIDS Day, and what can people expect from your event on December 1st?
Shahgheibi: World AIDS Day is observed annually by organizations all over the world. It’s a day for communities to gather and remember those we lost to HIV and AIDS and unite in the fight we have ahead of us. This year’s theme is Let Communities Lead. We’re focusing on communities that are most affected by HIV and AIDS, and bringing them to the forefront of the event.
We have two speakers and three performers. We’ll have a [battery-operated] candlelight vigil led by our board president, Georgia King, who lost her son to HIV. Chris Jacobson-Chism is performing a song he personally wrote. Kendall Johnson will talk about his experience living with HIV, and our client services representative will talk about HIV from a medical perspective. I will be talking about my job, and will share about the clients that I’ve lost. We will also have Peach of the Midwest closing out the show. The [AIDS] quilts will be on display, and people will have an opportunity to make a small quilt of their own.
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You can find the full schedule of events for World AIDS Day at Spurlock Museum on the Facebook event page. The event is free and open to the public. Greater Community AIDS Project is also planning another big event this spring, the return of Artists Against AIDS, which has been on hiatus since 2012. Right now they are looking for volunteers to be a part of the committee. If you’re interested, you can send them an email. If you’d like to donate to GCAP, you can do so on their website.