ACT UP, Groundbreaking Group That Fights AIDS, Returns To Chicago

CHICAGO — In June 2022, J Saxon was attending the inauguration of the AIDS Memorial Garden when a woman sitting on a rock struck up a conversation with him.

That woman was Lori Cannon, the “AIDS Angel of Chicago,” who helped found grassroots advocacy organizations, including Open Hand and the Chicago chapter of the AIDS Coalition to Unleash Power, or ACT UP, an AIDS advocacy organization whose members confronted government officials and the healthcare industry to demand action and resources for communities impacted by HIV and AIDS.

Cannon attended the event wearing the press pass of her friend, ACT UP/Chicago cofounder and political cartoonist Daniel Sotomayor — a press pass Sotomayor forged long ago to confront Mayor Richard M. Daley, demanding the mayor do more for Chicagoans living with AIDS, she told Saxon.

“I feel lightning strike my heart,” Saxon wrote of that experience. Moved by this conversation with Cannon, they verbally confronted then-Mayor Lori Lightfoot and Gov. JB Pritzker, expressing anger over the abandonment of COVID-19 protocols and what he sees as a repeating of the same mistakes of government inaction during the AIDS crisis.

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ACT UP was founded in New York City in 1987 with a focus on strategic direct action to end the AIDS crisis. “Its determined advocacy and highly-focused demonstrations supported by innovative graphics utterly changed the world’s perception of people with AIDS and queer people,” according to the ACT UP Oral History project.

“The whole idea of ACT UP is for there to be a mechanism outside of 501c3s, outside of respectability politics, a free agent that is able to be an emotional expression of the reality of the plight we are in,” Saxon says. “Docility achieves nothing. Direct action has been how you get the goods.”

This spring, Saxon became the first re-founding member of ACT UP/Chicago, launching social media for the group.

This renewed incarnation of ACT UP focuses on three advocacy and protest tentpoles: “attacks on HIV/AIDS funding, the domestic Trans genocide and the ongoing and unmitigated COVID pandemic.” 

“I was not an adult until the AIDS crisis was over, and I have benefited greatly from the blood, sweat, tears and lives that were spent in service of ending the AIDS crisis in the U.S. — the advancement of medication, services and congressional funding, and decades of it,” Saxon said. “We are nearing the end of that moment. It’s all hanging on by a string.

“The government of Illinois is doing what they can to make up for funding gaps, but it won’t be enough when we’re being fleeced.”

‘Perfect Storm’

Saxon said this moment where he began to reestablish ACT UP was a “perfect storm,” as it’s seen the dismantling of COVID mitigations, the federal government’s slashing of funds for HIV/AIDS prevention and services abroad through USAID and the President’s Emergency Plan for AIDS Relief, and dramatic proposed cuts to healthcare and social safety net programs at home.

“A lot of the policy decisions that have affected our role in international health have cratered the decades of advancements and stability that medication and medical services, supporting the global south and Africa in HIV/AIDS management,” Saxon said. “With the absence of our literal dollars and supplies and medicine, what was already a crisis is now a catastrophe. The current administration and the people at the helm are hoping to do the same thing to the U.S.” 

More than 100 people have filled out an interest form for ACT UP/Chicago and more than 850 people are following the account on Instagram.

“There’s the policy aspect, but there’s so much in a shared understanding and vision that there’s something we can do other than weep and cower under the overwhelming weight of it all,” Saxon said. 

Saxon’s Instagram post for ACT UP caught the eye of artist and performer Ray Jones. Jones had been having conversations in the long COVID and chronic fatigue syndrome communities about needing an ACT UP-style advocacy movement because of a lack of reporting and resources within the community. Jones immediately filled out the form and began having conversations with Saxon.

One thing Saxon has found surprising in these early building conversations is that his perspective is not unique, he said. The knowledge sharing and cooperation among those joining the group is comparable to what emerged in 2020, when an intense camaraderie and crisis response emerged in communities across Chicago and the world in the early stages of the COVID-19 pandemic. 

“These people have not abated, have not forgotten,” Saxon says. “They understand the real risks of where we’re at and want things to be more accessible and safer and for a true normalcy to emerge rather than a false normalcy. That’s been really edifying for me.”

Currently, ACT UP/Chicago is focused on studying and building relationships locally and beyond. With the reformation of the chapter — which had been defunct for 30 years — members of the original group have been reaching out.

“What is available intergenerationally speaking and what there is to learn from the local histories, the living histories, that’s something that’s very important to me,” Saon said.

Jones, too, has been researching ACT UP/Chicago’s history. They said the availability of information at Gerber/Hart, the city’s LGBTQ+ library and archives, is limited, and the bulk of the available archived information is at the University of Illinois-Chicago. One of their hopes for the group is to create a more accessible digital archive about ACT UP/Chicago, they said.

Members of ACT UP/Chicago have also been meeting virtually with other ACT UP chapters all over the world and sharing resources.

“It’s something that’s been noticed by other chapters, how quickly we’ve gotten interest,” Jones said.

Direct Action

While Saxon said it’s too early to answer what sets ACT UP/Chicago apart from its counterparts, there are members of the local chapter who are well-versed in technology and knowledge-sharing around COVID prevention and safety. According to a 2026 CDC study, around 6 percent of Illinoisans self-report having experienced long Covid.

“We are not the only ACT UP chapter that sees a solidarity connection of the AIDS crisis past, present and future and the present crisis of the pandemic and long COVID,” Saxon said. “There’s a growing relationship and communication of what we can do here.”

Jones said ACT UP has already started working with other COVID-conscious organizations, including assisting Clean Air Club with delivering air purifiers to better assist event producers who don’t have a car or infrastructure to transport the equipment. Jones, a drag performer, is also a member of Shooting Star, a collective of disabled drag performers, and wants to offer resources from ACT UP to support them and other grassroots organizations with resources and people power. 

“We have something that can put a lot of momentum in a very scary time,” Jones said.

Over Pride weekend, ACT UP participated in Dyke March and the Trans Liberation March, as well as Dykstryk’s program following the latter. Jones said they are cautiously optimistic about the group’s future, but that the visibility of ACT UP can be a double-edged sword. 

“ACT UP has brand name recognition, and unfortunately, brands can get sanitized,” they said.

For Jones, direct action, a core tenet of ACT UP, is about reducing harm and meeting community members where they are at. Members come to ACT UP with a variety of skill sets, including making and delivering meals, political campaign work, art and more. 

“If you’re bedbound and can’t make your medical appointments or cook for yourself, it looks like your neighbor who has a car picking up your meds for you or people in the community making meals for you and delivering them,” Jones said. “Direct action has always been intended to fill in the gaps while we are pressing our government to do what they’re supposed to be doing.” 

Among ACT UP Chicago’s chief concerns at the moment are the social safety-net cuts under the Trump administration’s “Big Beautiful Bill,” which took effect in June, including not only steep funding cuts to SNAP and Medicaid programs, but restrictions in eligibility. ACT UP Chicago is working on infrastructure to help people fill out SNAP and Medicaid paperwork and be a resource for Chicagoans needing support to fill out related paperwork. 

In addition, ACT UP plans to put pressure on elected officials — in particular over the police department’s presence at the Chicago Pride Parade, which ACT UP and some neighborhood advocates viewed as excessive. Jones said after the Dykstryk event, they were escorting attendees to the Wellington CTA stop because police presence had shut down Belmont. 

“It’s unacceptable to have such a ridiculous saturation of cop presence at Pride, and also ridiculous to me that we still have people who are sleeping on the train, but our current government is allocating $400 million to renovate State and Lake,” they said. 

Chicagoans interested in getting involved can contact ACT UP at actupchicago@proton.me to share their interests and passions, Jones said. They can also follow the organization on Instagram and fill out the interest form to attend biweekly Zoom meetings. 

“What I am excited about in the future for ACT UP is that we are very focused and intent on bringing the levels of action that secured us funding between the ’90s and the 2000s,” Jones said. “With the funding cuts, we are setting a tone that this is unacceptable and not something you just vote your way out of.

“You have to make a much more principled and clear stance.”