In light of the federal government plan announced in February 2019 to end the HIV epidemic in the U.S., TheBody has created a new series called Eyes on the End. This series will include a snapshot of the HIV epidemic in each of the 48 counties, seven states, and two cities targeted within the plan. These profiles aren’t meant to be the definitive story of the epidemic in each locale, but rather—through sharing some basic statistics and interviews with a few key stakeholders—to provide some context for what’s occurring there, and what it will take to end the epidemic in that area.
The Big Picture: HIV in Cook County (greater Chicago), Illinois
Thanks to a robust services infrastructure, the Windy City is on track to end its epidemic by 2030—but challenges remain, including meth use among young gay and bisexual men of color.
Need-to-Know Stats About HIV in Cook County, Illinois:
A year before Chicago launched its “Getting to Zero” plan in 2017, it recorded 839 new HIV cases—the fewest number of new HIV diagnoses in more than 25 years and a 55% decline from 2001.
In 2016, African Americans, while making up about 32% of the city’s population, accounted for 59% of new HIV diagnoses and 56% of AIDS diagnoses.
In 2016, 80% of those diagnosed with HIV were linked to care within a month, and 92% were linked to care within a year. Among all HIV-positive Chicagoans, 60% accessed care in 2016, 40% were retained in care, and just under half were virally suppressed.
About 10% of Chicagoans who could benefit from pre-exposure prophylaxis (PrEP) were on it.
Of all new HIV cases, 72% were in men who have sex with men.
Among women, Black women made up 81% of those diagnosed with HIV.
The highest rates of new HIV infection diagnoses were seen in the neighborhoods of Douglas, Edgewater, Grand Boulevard, Kenwood, North Lawndale, Rogers Park, Washington Park, West Garfield Park, and Uptown. The highest rates of people living with HIV were in Edgewater, Rogers Park, and Uptown.
Successes and Challenges Facing HIV Service Providers in Cook County
We talked with Ariq (pronounced “Eric”) Cabbler, cofounder and executive director of Brothers Health Collective.
Ariq Cabbler: We who started BHC came together in 2006 as a group of individuals wanting to provide direct [HIV and sexual health] services here on the [traditionally African-American] South Side of Chicago. One of our founders, Ernest Hite, Jr., who was openly HIV positive, passed away in 2008. In 2010, we became a service provider based on a health navigation grant from the AIDS Foundation of Chicago and AIDS United. [The original site of the longstanding LGBT health center] Howard Brown and [the HIV services agency] Test Positive Aware Network were on the North Side. On the South Side, we had a number of hospitals, but no community-based, for-us-by-us prevention agency for men who have sex with men [MSM] of color. I’ve been the executive director since 2010. Before that, I was a contracts monitor at the Illinois Public Health Association.
We’re in the Near South Side neighborhood, in the Loop. Our annual budget is $400,000, most of it from CDC [U.S. Centers for Disease Control and Prevention] and Ryan White funding. We’re fewer than 10 staffers, all Latinx and African American, half women and half men, currently no transgender people and nobody living opening with HIV. Some staffers who were openly positive have moved on.
Right now, we have 200 enrolled Ryan White clients and 25 active PrEP clients, with a goal of 100. We maybe reach 500 people beyond the clients, but we hope to reach at least 5,000. Our heaviest concentration of clients are in the Back of the Yards neighborhood, which we border, and also Washington Park, Grand Boulevard, Chatham, Pilsen, and Chinatown. Most of our clients are MSM, the majority African African, then Latino and Asian, with about 15% African-American women. About 40% of our clients are age 58 or over. Our clients are only 1% transgender; that community tends to go to Howard Brown, which has a large hormone-therapy and other trans programs. Another transgender community center, Brave Space Alliance, just opened on the South Side.
Tim Murphy: What’s your gamut of services?
AC: We provide navigation to both HIV care and to PrEP. We have relationships with about 10 care providers, mostly on the South Side, including the CORE Center, Howard Brown, Mercy Hospital, and AIDS Healthcare Foundation—the last two of which both have clinics literally across the street from us.
We focus heavily on medication adherence. We have two programs: Our VERA virtual engagement project, where we do telepharmacy and tele-case management. Then we have Medisafe, our red-carpet retention and adherence program. For clients who need it, we pay for their phones, which have the Medisafe app on them to remind them to take their meds and to keep a record of adherence. Our aging population finds it very useful, because they’re taking a number of meds.
Our VERA project keeps individuals motivated and engaged in care through a psychosocial therapy program.
As for HIV prevention, we do HIV, STI, and hep C testing, and we have our “Passport to PrEP” program.
TM: Do you do nonmedical stuff?
AC: We have housing case management, and we are also a recent HOPWA provider. We have four houses that we manage that have supportive services for homeless MSM of color. We make sure they’re provided with 90-day transitional housing, then we work with our partner organizations, like Christian Community Health Center and AMITA Health Alexian Brothers Health Center to help get clients into permanent housing.
TM: Do you do events?
AC: Yes. We recently teamed up with the University of Chicago Medical on a series of events called “Art and Healing,” where we team HIV testing and linkage to care with things like burlesque, body paint, and poetry. It’s like a pop-up art event.
We also have a new social media and events-driven PrEP awareness program called Carefree 365. We’re trying to bring together artists, medical providers, and community members at different art galleries throughout 2020. We still have low community awareness of PrEP in Chicago.
TM: Why do you think?
AC: You may be MSM but not part of a gay or social scene. This is more common in areas like Pilsen, Austin on the West Side, Roseland, as well as the South Shore—all places where there has not been enough PrEP promotion.
TM: How would you paint the current HIV picture in Chicago in broad strokes?
AC: It’s a mixed bag. Citywide, rates have been going down in recent years. There’s a new incidence of HIV among young MSM on the South Side, which we attribute to a very large crystal meth epidemic. There’s this thing going on called “Late to the Party,” where stragglers come into crystal meth sex parties to drink the urine of the guys who are already high and get high off of it. So we’re working with another MSM named Keith Green at Task Force Prevention to address these issues with more safety-net and substance-use-prevention services.
We’re working with TEECH, a new peer-recovery provider with a very good record of retention. They’re an outpatient harm-reduction program where you have to be willing not only to address your own addiction but to train for employment in janitorial services. You won’t be kicked out for using, but they strongly recommend that if you’re not striving toward bettering yourself, this may not be the program for you. They’ve been referring to us, and vice versa. They also draw the clients’ families in if possible, as part of the treatment plan. It’s going really well so far.
TM: How many new diagnoses among MSM of color do you think are driven by meth use?
AC: Here, lately, I’d say about 45%. We also see that guys with HIV will take a meds “vacation,” up to 90 days, so they’re detectable but saying they’re undetectable. So we work with a pharmacist to come in and provide education about that.
TM: How is PrEP uptake going?
AC: Low retention is where we suffer. Guys will do the first x number of months, then stop. They’ll say, “Those commercials [for lawsuits against Truvada-maker Gilead] told me that PrEP hurts your kidneys,” or “My partner is positive but undetectable, so why do I need to be on PrEP?” We try to tell them that PrEP is about [taking protection into your own hands]. So with our Passport to PrEP program, we work with UrSure urine testing out of Boston, and if you have a high reading of PrEP in your urine every 90 days, we give you $150. We also do this on the HIV-positive side with undetectable viral loads, with a $100 reward. It’s a new thing we’re doing, so we’re just starting to evaluate that data now.
We also partner with Northwestern Medical Center on a motivational mobile app that sends you motivational messages about taking your meds throughout the day.
TM: Where would you brag that you’ve really had success?
AC: Our Red Carpet retention-in-care programs have really made a dent in terms of people staying undetectable and having good quality of life. We have raw data showing that people are definitely being compliant with retention and using their Medisafe app. About 65% of the people in Red Carpet have shown an increase in both undetectable status and CD4 counts.
We’ve become a biomedical agency in terms of PrEP and undetectability. All of our programming is now designed around supporting individuals toward self-management of their care and self-empowerment.
And as for our four new transitional homes, they all opened in January. We rent the buildings. They will sleep 32 total by January 2021. Our goal is to buy property to house our aging MSM community. We now have a geriatric case-management system, and we see high levels of isolation and depression in that group.
TM: Where do you feel most stuck or frustrated?
AC: By something we call majority-led gentrification. We feel we’ve been pushed out of the system by health providers. We’re struggling because the larger providers are planting their flags around us. Howard Brown now has three locations on the South Side pulling clients away from us, because they can get everything they need there. But our Red Carpet virtual engagement mobile app allows clients to really stay in tune with us. And we’re more personalized and more like a family here.
TM: What role do you think you play in terms of the big goal of ending the epidemic?
AC: We help our clients navigate through these larger institutions. On one hand, people have more access, but if you don’t have cultural programming. … The majority of our clients dropped out of their prior care systems, then we picked them up and re-engaged them back into care.
TM: What would you do with more funding?
AC: It would allow us to build out our adherence program by designing a for-us-by-us biomedical center of excellence and increase both staffing and clientele. Maybe we’d offer virtual primary-care services. We’re going to have to have primary care in-house or we’re not going to be part of the mainstream, and we’ll be acquired by one of these places like Howard Brown. Today, it’s like, if you don’t provide primary care, what is your value?
We’d also hire more specialized social workers focused on gerontology for our aging population. And hire more peer-recovery specialists to address crystal meth. Our goal for the next few years is to expand our Passport to PrEP program and make sure there’s more awareness of and accessibility around PrEP. The other goal is to expand our virtual primary-care services.
TM: What is doing this work like for you personally?
AC: It’s made me more resilient, in the sense that I’m learning that there are more complex individuals out there than I was aware of, aging people of color living with HIV.
TM: Any stories you would like to share?
AC: Yes. We had one client who was struggling with addiction and was in need of support systems, so through CLEAR, our behavioral health program, he got hooked up to TEECH and is now a role model who wants to provide support to others, share his story, and make sure that others are aware that you can recover. He was a prime example of someone out there struggling with his sexual orientation, addiction, living with HIV, and family reunification.
We had another client who was struggling with his diagnosis two years ago and dropped out of care. We were able to provide him with a battery of support systems, and he’s now treatment-compliant and has a job and has really done a 360 in his life, and he’s been clear that BHC has supported him into a better quality of life.
Positive POV: Lee Kidd
We spoke with Lee Kidd, 65, of Chicago, who is an HIV advocate, peer group leader, and part-time pizza delivery man. He was diagnosed with HIV in 1989.
Lee Kidd: I grew up right here in the city. We lived in Mississippi for a few years when I was young, but then we came back, and I’ve been here ever since. I grew up with dozens of cousins, and I was the free-spirit kid who liked to clown and make everyone laugh.
Tim Murphy: So Lee, what is your personal HIV story?
LK: I was working for a company, as a supervisor of a three-shift operation. There’d been a guy I’d been messing with, and I heard rumors that he was positive, so I went and got tested. When it was positive, I said, “This is a lie—I’ve had these symptoms like night sweats all my life.” So I went to my doctor, who tested me again, and it came back positive.
I was still married at that time—I was still living a bisexual life—so the health worker called my wife to tell her, without mentioning me, that she might have been exposed, so both my wife and daughter got tested. They were negative. But after that point, I left the relationship. I didn’t want to contaminate them. Then I stopped dealing with women, because I’d been on the down-low for too long.
Honestly, I didn’t think I could get HIV, because I thought it was a white man’s disease. I’d only go to white gay bars, because I didn’t want to be seen in my ’hood at the Black gay bars—I ran into a guy from church there once. Anyway, white guys were more into me than Black guys, they all wanted Black dick, so I’d go to pool parties with them and have wild fun and sex. I actually think I got HIV from a white guy I met at a bar.
TM: What was your emotional reaction to the diagnosis?
LK: I was kinda devastated. It began to wear on me, to the point where I quit my job. I told nobody in my family. The only person who knew was my doctor, who prescribed me [the anti-infection drug] Bactrim and said she couldn’t do much more for me, so she referred me to the infectious-disease department at Cook County Hospital. So I went there, and as soon as I got there, I ran into a friend of mine who was a nurse. So I turned around and hurried away, but he ran after me and embraced me and told me he was going to hook me up to the best care. And that’s when I started learning more about HIV and getting more treatment.
TM: Did you finally tell anyone?
LK: Not really. I started going to the hospital’s support groups. My cousin moved back from D.C. with his Ph.D. and told me he had AIDS. But I didn’t tell him that I did. We became really close, though. He got [the opportunistic infection mycobacterium avium complex] MAC. I did finally tell him before he died.
After he died, I was so torn apart that my doctor sent me to see a psychiatrist, and we began to talk about the importance of disclosure. I disclosed to my mom and tried to get her to come with me to a support group, but she was in denial that I was gay—I had two kids already. But then my brother caught me sneaking a guy in, and I got tired of hiding it, so we had a cocktail and we cried together, and he said, “Dude, you’re my brother, I love you no matter what.” Then I eventually told all eight of my siblings, one by one, and they were all OK with it.
But I ended up leading a very destructive life. I grew up in the church, singing in the choir, all this don’t-do-this, don’t-do-that, but I said, the hell with it, I’m gonna die anyway. I didn’t do heavy drugs, just a lot of alcohol and weed and sexual stuff like having threesomes, visiting bathhouses and leather places with boys in cages.
So I lived like that for five years and luckily never got really sick. But something in my spirit said “Live!” and things started turning around. I started dating people and having meaningful relationships, and I went back to work in a supervisory capacity. I’d still get fatigued. My doctor started me on [the outmoded HIV drug] Zerit.
TM: Come 1996, did you go on the HIV protease cocktail?
LK: Once my CD4s started dropping, yes. I was going to support groups all over the city, meeting guys who’d been rejected by their families. Then at some point, I started using crack with a flight-attendant lover of mine I was living with—I did it for 10 years and used the HIV/AIDS excuse to get out of my job. I went to rehab twice. I didn’t care for 12-step meetings [like AA or NA], because I already had Jesus. That was my 12-step. My mother was sick when I was in rehab, and they wouldn’t let me go see her, but I had my brother and his wife pull me out, so I was able to see her before she died.
TM: So you’ve survived all that. What’s your life like today?
LK: I work two part-time jobs delivering pizza. I’m still receiving a disability check. And I’m an advocate all over the city. I do a pill-reminder study at BHC with Ariq. It’s an app that you put on your phone that reminds you to take your meds. It’s helped, but I still [forget to take them] now and then. I do a lot of one-on-one advocacy and groups, sharing with people about the BHC studies and how they can get financial aid by joining them.
TM: What have you learned from 30 years living with HIV?
LK: I’ve changed my whole lifestyle because of HIV. I took my health to another level because my support groups were teaching me to eat better, exercise, go to my doctor and dentist. And today I’m 65. I almost had a heart attack, but it wasn’t one. I quit eating pork and beef and started eating more turkey, doing less frying, went to a nutritionist, started taking the skin off the chicken and not eating the yolk in the eggs. I just drink green tea and go to the gym three days a week.
But then I started putting on weight because I’d eat cookies, cakes, potato chips, and ice cream after smoking weed. Three weeks ago, I couldn’t button my jacket for church. I said, “This shit’s gotta stop,” so as of November this year, I took all the [junk food] out of my house. I’m still smoking weed, but the food is out of sight, out of mind. Actually, three days ago I quit smoking weed.
TM: What’s your take on HIV in Chicago right now?
LK: I think a lot of these young guys want to be HIV positive to get [housing and other benefits]. They say, “If I can get that, I can just take meds and live a long life.” You’ve still got the down-low going on in the Black community, and a lot of boys out there prostituting for drugs and messing with guys but saying, “Man, I ain’t gay,” but they’re sucking and fucking guys in the park. It’s confusing. I’ve had a lot of guys in my bed who say, “I ain’t gay,” then their girlfriends come banging on my door, yelling, “Get your ass out of there.”
TM: What do you think is missing from the equation in terms of bringing down HIV infections in young Black men who have sex with men?
LK: I thought things were going to get better when same-sex marriage became legal, but it got worse. I thought more people would come out, there’d be no more shame and stigma, if someone called you “Faggot!” you’d go, “Bitch, it’s legal—go fuck yourself.” I’ve had nephews and nieces come out to me privately. I had a cousin commit suicide because he was gay.
TM: So what would be your number-one recommendation to end the epidemic in Chicago?
LK: Ending stigma. I had a lover who I used to do crack with. He was scared to come out to his parents as gay and positive. But they found out about it, including his drug use, and he was still in denial, calling other guys “faggots.” I said to him, “Don’t you ever talk that way—plus, you’re a bottom.” And I said to his mother, “You have to tell him you love him no matter how you feel about it.”
TM: So you’re saying that unless the Black community cracks the stigma of being gay, it won’t be able to conquer HIV?
LK: In the Black community, gay women are more accepted than gay men. It’s because men would love to be in a threesome with two women, even if they’re two lesbians. But if you put a man in a threesome with another man…
TM: What would you say to someone who’s newly diagnosed with HIV and freaking out?
LK: Get in a doctor’s care, get in support groups, learn more about this and take your medicine, go to the dentist and get your teeth cleaned, get your labwork done. And God or whatever you believe in will guide you from there.
TM: Lee, what brings you joy in life?
LK: Helping others, sharing with others. I spend time with my grandkids. They all know I’m gay and HIV positive, so they don’t have to dance around it. At work, the younger generation grabs and hugs me when I walk in, and I’m like, “What? Y’all miss this old man?” But they love it because I give them advice. Just being able to advance their lives. If someone needs money, I’ll give them a [few] dollars, but then I’ll tell them where to go to get training to become a forklift driver.
When I take the focus off myself and help others, God blesses me with more help [for me].