HIV/AIDS was first mentioned in a medical journal 45 years ago, and while so much progress has been made, certain things persist from the early days of the epidemic—including HIV stigma. Unfortunately, stigma has continued to be fueled by factors such as fear, misunderstanding, and moral judgment, leading to consequences ranging from lack of self-esteem to lack of access to health care.
Seeking to address this persistent stigma, AIDS Foundation Chicago (AFC) and Pride Action Tank are hosting the Eliminating HIV Stigma Summit. It will take place in Kasbeer Hall on Loyola University’s Water Tower Campus (25 E. Pearson St.) on Tuesday, July 21, 8 a.m.-4:30 p.m. The event will offer public health agencies, healthcare and service providers, and community members an opportunity to engage in dialogue around HIV stigma in the healthcare system and wider communities.
AFC Senior Director of Policy & Advocacy Timothy S. Jackson took time to talk about the summit and the continuance of HIV/AIDS stigma.
Andrew Davis: It’s approaching 50 years since HIV was first mentioned in a medical journal. Why does stigma persist?
Timothy Jackson: Stigma persists for a variety of reasons, from cultural norms to misinformation and disinformation as well as lack of information. People just don’t know. And we use that to weaponize things like HIV, substance use and homelessness. And you deal with so much externalized stigma that you begin to internalize it.
So, if you’re a person living with HIV or a person who’s experienced homelessness, that noise begins to seep in and you start believing it yourself. And so, that’s why stigma persists and it’s so difficult to really engage and to address—because it’s like this amorphous thing, right? You can’t really see it but you can see the effects of it.
Davis: Stigma is pervasive throughout all facets of life, it seems. But for example, stigma in the healthcare field surprises me—because there have been so many advances made and because I thought that medical professionals were taught to be open-minded.
Jackson: Again, I think it still boils down to lack of knowledge and a lack of good information. I’ll use this as an example: We are still having issues with PrEP uptake. PrEP is up to 99% effective in preventing HIV and it has been around now for 10-plus years.
By all accounts, it is doing everything it’s supposed to be doing. Yet, we still have some providers who refuse to prescribe it because there’s this belief that their clients and patients are now going to be promiscuous or are not going to take their sexual health seriously. But the numbers and research have not laid that out.
Davis: Well, that rebuts the notion [of open-mindedness].
Jackson: And what is this built on? Stigma and bias.
I saw something on social media that was interesting to me. One question asked, “Would you rather have HIV or diabetes right now?” Every one of the [respondents] said, “diabetes” even though HIV is a completely manageable condition; in another study, everyone picked ALS over HIV. There are, obviously, some issues when you’re not on your medication when you have HIV; however, if you’re on your medication with an undetectable viral load, you are fine.
Davis: I want to talk about legal developments. It’s interesting that there are still HIV-criminalization laws in certain parts of the country.
Jackson: I think there are 32 states that still have them.
Davis: First, what do those laws cover? Is it the passing of HIV? Is there some other aspect that they cover? And in your mind, why do these states still have these laws? I know that Illinois does not.
Jackson: Yeah, because we got rid of that law in 2021; I was the lead lobbyist. Illinois became the second state in the nation to fully repeal a law criminalizing people living with HIV.
To give you a little background and to show how stigma is interconnected with these laws, these laws were created because Congress had discussions in the late ‘80s about doing something for people living with HIV. [Note: Per The 19th, In 1990, Congress passed the Ryan White Comprehensive AIDS Resources Emergency Act, named after a teenager who was diagnosed with HIV in 1984 after receiving a blood transfusion. This act created one of the largest federal programs to provide funding for HIV care and treatment efforts.]
But states had to enact this harmful [HIV-criminalization] law to get federal funding. The federal government removed that requirement; yet, these states still have these laws on the books. For many of these states, actual transmission or exposure is not needed for prosecution. In Illinois, it was a Class 2 felony for a person living with HIV to be able to exchange blood and semen.
Let’s say a relationship ended badly. With the criminalization law, the other person could go to a police precinct and file a report—and I could be charged with this crime. That does not make sense. Plus, it’s stigmatizing, it’s discriminatory, and not one study around the world has shown that these laws actually help.
In addition, these laws do the opposite of what we want people to do. They discourage people from getting tested and knowing their HIV status. We want people to get tested for HIV—but in states where HIV remains criminalized, you can’t be charged with the crime if you’ve never been tested to know you have HIV. I’m also board president of The Sero Project, a nationwide HIV decriminalization organization—so this is something I care a great deal about.
Davis: Let’s talk about combating stigma. How do we go about it? It seems like education [would be key] because a lot of the stigma, as you said, is rooted in ignorance.
Jackson: Education is always helpful. I cannot tell you how many people don’t believe that HIV is still around, which is absurd. There are more than 40,000 people living with HIV in Illinois alone. It’s still here, and the numbers are rising among certain populations. So making sure that people have accurate—and current—information is important. If their information is from the ‘80s, it does no good. If a lot of their information is from back when HIV was a death sentence, that’s stigmatizing in itself.
When I tell people about U=U, their minds are blown. When I tell them about PrEP and PEP and there are injectable options for HIV treatment and prevention, their minds are blown.
Another important thing is that we have to humanize HIV. When I talk to people about HIV, they still remember [the book and docudrama] And the Band Played On or the sores that Tom Hanks had in the movie Philadelphia.
I remember when we were working on HIV decrim in 2021—and I hadn’t disclosed that I was living with HIV. One legislator said, “Well, I’ve never met anyone living with HIV.” And I initially said, “that you know of. We don’t walk around with a scarlet ‘H’ on our chests.” He [later] said, “You don’t look like what I thought HIV looked like.” I said, “That’s the point.”
Davis: Also, the language has changed because there was a time when I would say “HIV-positive individual,” as opposed to “living with HIV.”
Jackson: It changed because we understand that a person who’s living with HIV is much more than HIV. And so we want to make sure that, again, this is a part of humanizing HIV. I don’t go around saying “I am a high cholesterol person” or “I am a high blood pressure person.” So why would I say “an HIV-positive person?”
Davis: Lastly, I definitely want to talk about the summit itself, which is taking place on July 21. The theme is “Shifting the Narrative: Empowering Voices, Inspiring Home, Transforming Lives.”
Jackson: Yes—we will talk about shifting the narrative of what HIV is, was and will be. I was intentional when I came up with that theme because I knew this was the 45th year of the beginning of the epidemic. There’s been a lot of reflection going on about where we were, where we currently are and where we want to be.
A friend of mine posted on LinkedIn that an annual run/walk event (like the one done here in Chicago) pulled in $3 million—after raking in $6 million 10 to 12 years ago. So when I say “shifting the narrative,” I want people to get more involved. I want to go back to the days when we had people knocking down the doors of Congress, in Springfield or City Hall. I think that treatment and prevention options have made us complacent.
Things are going well and it’s so hard to lose focus about where we came from in the ‘80s and ‘90s, when all of the stuff we have right now did not exist. So I want to get that spirit back—that community-led, community-focused spirit.
Davis: But not necessarily the knowledge that we had back then because things have changed so much.
Jackson: Right. I want to make sure that when we talk about shifting the narrative, that we’re educating people about all the new things that are going on with HIV and that there are different ways to engage in advocacy. Advocacy is about how we talk about HIV on social media now. In the ‘80s and ‘90s, art led so much of what we did; look at the Keith Haring statue along the lakefront. So this summit is about how we use these different things to bring different people to the table to shift this narrative and the way that we talk about HIV.
Davis: Is there anything you want to add about HIV/AIDS, stigma or the summit?
Jackson: My thought is that, even if I had a magic wand and could triple federal funding for HIV on the state and local levels, we still wouldn’t end the HIV epidemic—because we have not addressed stigma. We have to do the work of changing hearts, minds and knowledge about HIV. And that is a part of what this stigma summit is intended to do.
By no means am I under the impression that this one-day summit is going to cure all of the ills. But I do hope that this is the beginning of a conversation that we have regarding our efforts to get to zero. I hope that this is an honest conversation about stigma and its intersectional relation to all of the things that impact this community.
The Eliminating HIV Stigma Summit will take place in Kasbeer Hall on Loyola University’s Water Tower Campus (25 E. Pearson St.) on Tuesday, July 21, 8 a.m.-4:30 p.m. Register and find more information here.
