On World AIDS Day (Dec. 1), there is a good-news/bad-news scenario for Black Chicagoans.
The good news, according to an October report from the Chicago Department of Public Health (CDPH), is that the number of new HIV diagnoses in 2020 in Chicago was the lowest in 40 years. The bad news is that, by race/ethnicity, Black Chicagoans made up 55% percent of new diagnoses as well as 57% of AIDS diagnoses and 48% of late HIV diagnoses.
Why are Black people still making up the majority of these new cases and what can be done to turn things around? The TRiiBE talked with AIDS Foundation of Chicago (AFC) Vice President of Prevention and Community Partnerships Dr. Cynthia Tucker about problems and solutions as well as AFC’s own Racial Equity Awareness Plan.
The TRiiBE: I wanted to start this talk by discussing the Chicago Department of Public Health (CDPH) report that came out in October. It stated that the number of Chicagoans newly diagnosed with HIV and AIDS in 2020 was the lowest since the 1980s.
Dr. Cynthia Tucker: Yes—numbers have gone down tremendously, which is fantastic. However, there are a couple of things we need to acknowledge or keep in mind. One is that we were in a pandemic and, because of COVID, there may have been fewer people tested for HIV during the last two years—although they’re still doing the research on that.
But actually, by race and ethnicity, the largest number of new HIV and AIDS diagnoses were with Black Chicagoans. So although the numbers are lower, they’re still highly represented in communities of color.
Why do you think that is?
Tucker: It’s due to the social determinants of health. It’s because of poverty; lack of access to insurance, healthcare and transportation; violence in the community; education; and housing. Most of those things are what people need first.
And with violence, I mean community violence that might slow people down and prevent them from coming out during certain times of the day.
We have to look at all of the other aspects that affect people, although CDPH did a remarkable job with the report. We have to look at the way people live to reflect what’s happening with HIV. Then, we have a better understanding that the diagnoses are higher with Black Chicagoans.
I also saw in the report that the largest number of new HIV diagnoses by age group were in younger Chicagoans, ages 20-29.
Tucker: People aren’t seeking healthcare and aren’t utilizing prevention options. We see commercials where we see people going off mountains and doing all sorts of things. We’re not promoting PrEP [used to help prevent HIV when taken as prescribed], for example, in communities of color. And people in those communities are not able to access because the doctors don’t say, “Oh — have you heard about PrEP?”
I also feel that there’s this laid-back attitude about HIV/AIDS, like it’s something that happened in the past.
Tucker: Absolutely! You have these commercials that make everything look like it’s beautiful and glorious — and that, if you get HIV, it’s not a challenge. No one talks about the difficulties and barriers that people with HIV and AIDS face, including stigma and the underlying conditions — like the toll they take on an individual’s body.
I was at a conference this year on HIV and aging, and one of the things the experts said, “We think of aging as a person who ages at about 65 to 67. But in the HIV world, it’s actually 46.” That actually sparked me to think, “Wow! HIV is really taking a toll on a person’s body, and the person is actually going through two different things [HIV/AIDS and physical aging] that affect the body.” It makes you think.
So besides more promotion of PrEP, what can be done for Black communities and what can Black people do to turn the numbers around?
Tucker: We need more community programming. We need to go back. Years ago, we had plenty of prevention programs. Organizations were funded at the community level and they were able to go into communities.
Also, if people are feeling well, they’re not going to go to the doctor for preventive medicine and care. Therefore, we need to make sure we’re going to them — to take messages and services directly to them.
You mentioned stigma. How does one fight that?
Tucker: That’s a beast and there are different types of stigma. There’s internal stigma that people deal with. There is community stigma; we have to fight that by providing individuals with social support. We need to make it so people can receive services without fear of being talked about.
No one wants to be a statistic. We all want to live our lives; we want to be loved. People live with HIV, which is a chronic condition like diabetes, asthma or hypertension [high-blood pressure]. We don’t sit around talking about people with diabetes — but we do that to people with HIV.
We have to fund small organizations. We have to work with Black-led organizations who work directly with the community.
I have a program called Women Evolving. This organization works with Black cisgender and transgender women who are formerly incarcerated and living with HIV. So these women deal with all sorts of stigma in being Black, trans (in some cases), formerly incarcerated and HIV-positive. We’re helping them engage in safe and successful returns to the community. They’re getting support, including health services and an employment program.
We’re really trying to create something that really assists these individuals. The creation of this program came out of the fact that I have a corrections program for the last 17 years and I started seeing more women. I started asking, “What are we doing to help these women?”
My point is that we have to have programs that really meet people where they are. Hopefully, we get to the point where we can say, “Wow. We’re getting to zero and we really don’t need these programs.” (Getting to Zero Illinois is a plan to end the HIV epidemic in the state by 2030.)
I know that, on National Black HIV/AIDS Awareness Day in February 2022, AFC announced its first-ever Racial Equity Awareness Plan. How is that coming along?
Tucker: You know what? It’s definitely a work in progress but we’re definitely making strides and I’m a big part of that.
One of the things we have to do is respond. The George Floyd murder sparked a lot of people. We had actually been working on this for about the past five years, and I really pushed for internal and external changes.
In the first year of this plan, we’re working internally. We’re making sure that we take care of our policies and guidelines and that we’re working with Black organizations. Second, we have to make sure we support our staff and that we respect them; the work they do is very meaningful, as they are often with people who are directly impacted by HIV and AIDS.
We are really trying to make a change. As we move forward in executing our plan and accomplishing our goals, people will see the difference. I’m excited about that.