Founded in March 1987, the AIDS Coalition to Unleash Power (ACT UP) is a diverse, nonpartisan group of individuals united in anger and committed to direct action to end the AIDS crisis. ACT UP is run openly and democratically. There are no paid staff, and everyone is a volunteer. With an incredible history of fighting back and speaking truth to power, ACT UP members meet with government officials, distribute the latest medical information, protest, and demonstrate.
To learn more about ACT UP’s current work, Terri Wilder spoke with three ACT UP New York members: Annie Fureigh, Stephen Helmke, and Bri’anna Moore.
Fureigh is an educator and HIV activist based in Queens, and a current facilitator of ACT UP New York. The main focus of her work is convincing the public to demand the funding and resources needed to finally end the American HIV epidemic, and to modernize HIV education so that it is less clinical and more focused on people of all ages who are living with, and affected by, HIV.
Helmke is a long-term HIV survivor who was active in ACT UP New York from 1988 to 1994, primarily focused on Majority Actions and the Alternative Treatment Subcommittee. After recovering from advanced immunosuppression and then pursuing training in medical stenography, he became an echocardiographer and now manages geriatric cardiology research at Columbia University. He rejoined ACT UP New York in 2013 and has been active since then. He maintains a distinct interest in HIV organ-transplant equity.
Moore is originally from the suburbs of Chicago and now calls New York City home. AIDS advocacy became an important issue to her after she lost a close relative to an AIDS-related illness. She was inspired to seek out the New York City chapter of ACT UP after seeing Beats per Minute, a film about ACT UP Paris. In addition to being a general member, Bri’anna currently serves as a facilitator and a member of the social media team. She’s the main voice behind the group’s Instagram account (@actupny).
Terri Wilder: Thanks for joining me today. I’d like to first start off by just asking each of you if you can tell me why you got involved with ACT UP New York. And Bri’anna, I’ll start with you.
Bri’anna Moore: I got involved because I lost a family member to AIDS. And I now have a close friend who is HIV positive. So, ending the AIDS epidemic is a cause that’s really important to me, so I want to do everything that I can to help do that.
Wilder: Great. And, Annie?
Annie Fureigh: Hi. I got involved with HIV activism after the 2016 election. I had done a lot of LGBT rights activism when I was younger, and then when I became a teacher, kind of felt like I didn’t have the time. And then I realized that I needed to start doing things again. And I teach primarily in Title I, which is low-income communities with a lot of immigrant students. And my dad is an immigrant who was a low-income kid.
For me, just seeing the sort of level of knowledge disparity that there is in some communities versus others around HIV is very distressing. It’s important to me to correct that.
Wilder: Great. And, Steve, what about you?
Stephen Helmke: Well, I guess I would have to say that whenever I originally tested positive, back in the mid-’80s, I just was—it was a bewildering and frightening time. And I was actually prompted to go to the first meeting by my partner, Joel, who felt like it would be just a good outlet for my energy. And I returned because of the sense of hope that it gave me. And I kept going and got very involved.
And then fast-forward to 2013: I got reengaged in ACT UP. And that’s a more interesting question. Because so many of us were involved. But when I went to my first meeting—again, just prompted by someone else, my niece this time, whose mother was one of the original founders, wanted to go to a meeting, and she asked me to take her there. And when I got there, it dawned on me that there was so much left to be done, and the group needed as many long-term voices as it could, to give perspective. I also realized the way that the whole question of activism around HIV had shifted in that time, and I wanted to be involved.
Wilder: Great. ACT UP New York meetings typically take place on Monday nights at 7 p.m. at the LGBT Center in New York City. And, Annie, I know that you’re one of the facilitators. I’m wondering if you could talk about, in what ways has COVID-19 impacted ACT UP New York? Particularly, has the group had to change anything in terms of the way it operates?
Fureigh: Yes. I want to point out, Bri’anna is also a facilitator. And Stevie was a facilitator for a long time; he actually trained me. So, you’ve got three facilitators here.
Fureigh: I would say the main thing that’s changed is we’ve been having virtual meetings, which is a new thing for us. In a way, it’s been great because we have been able to bring people in and get people involved who are in different time zones and different cities to help us with organizing our virtual Pride celebration right now.
At the same time, there is something lost, I think, not being in a room together, and not being able to see new people who show up in person, and kind of get to know them a little bit. Yeah.
Wilder: Great. I know that Bri’anna, as your bio mentioned, you’re the main voice behind the group’s Instagram account. Obviously, social media is important in activism—and probably even more important right now because of COVID-19. Can you talk a little about what the role of social media is in ACT UP’s activism?
Moore: Yeah. One of our members, Jason [Rosenberg], runs our Twitter page. I think he’s done an amazing job over the past year, using the Twitter to get the message out about different discriminatory laws within our city, related to public health and HIV discrimination. Unfortunately, I cannot remember what he called it; but I know he started a hashtag related to this that went viral. And, as we’ve seen over the past couple of years, social media can be a great way to spark activism in people. And I think the social media team has done a good job of doing that over the past years and getting people more involved in AIDS activism than they would have been otherwise.
Fureigh: I think “Decriminalization as Prevention” [#DasP] is the [hashtag]—
Moore: Yeah. Thank you.
Wilder: Great. I’m just going to throw this out to all of you, and anybody can jump in and answer. What issues are ACT UP New York focusing on right now? What are your top priorities?
Helmke: I think that the things that maybe not necessarily are the highest priorities, but the things that we members happen to be engaged in right now that are gaining traction, are countering the meth epidemic; HIV education; decriminalization efforts; and, now, of course, we’re a lot more focused on the ongoing protests over the structural racism and the effect it’s had on both COVID and police violence.
Fureigh: I think that a lot of the issues that we’ve been working on—education disparities and health care disparities and access to PrEP—all of these things are driving factors of structural racism. So, this has been an interesting and stressful few weeks, where we’re kind of seeing the integration of the work we do and what’s actually—you know, what racism manifests as in the United States in a way that I think we don’t always see this clearly.
Moore: I’d like to also add that an initiative that we’re working on is, due to the presidential election, we’re focusing on voting and how important not only being registered to vote, but knowing what your candidate believes in, and focusing on each candidate’s platform, related to HIV, is something that we’ve been doing over the past year; and we’ll be doing more this fall.
Fureigh: We’re launching that campaign, hopefully, in two weeks. It’s going to be called Vote for Harm Reduction. We’re going to have bilingual materials about HIV policy issues, three different HIV policy issues, and questions people can ask candidates to sort of push them, wherever their state or local jurisdiction is at, on HIV policy.
Wilder: Steve, you’ve been coming to ACT UP meetings for a very long time. You’re an ACT UP alum. So, when you reflect on your time in ACT UP from the early years, what do you think has changed? What has stayed the same? And what do you hope for the future?
Helmke: Oh. The short answer is, what’s changed is ACT UP’s role in the fight and in the movement. What’s stayed the same is its mission, its core mission, and its, like, tenacity. What I hope for the future is to end AIDS, you know? But to expand on that, our role was, initially was, to create out of whole cloth a movement—an esthetic, an ethics—around the disease, and simultaneously to carry queer liberation forward.
Now, ACT UP’s role is almost to be—well, it’s to be that most democratic, most unencumbered by funding constraints and institutional bureaucratic directives, to be able to nimbly attach itself to different projects. But its role is kind of as the conscience of AIDS activism—from our perspective, of course.
People just seem to want to know what ACT UP thinks about stuff. And so, I guess, our role has become more of a think tank than it used to be. More of a—think tank is the wrong word—more of a—help me out with this, Annie and Bri’anna.
Fureigh: I hesitate to use the word influencer, but something along those lines.
Helmke: Yeah. It’s weird. It’s difficult to see yourself objectively.
Fureigh: Yeah. We’re an influencer that makes no money from anyone, which, I think—
Helmke: Right. Right.
Fureigh:—is why a lot of people see value in our opinion.
Helmke: And, you know, another thing is that we were sort of the workhorse of activism early on. We produced bodies the way that Ford produced cars, you know? And now we’re so much more of a spare few, compared to the old days, that we have to produce—we produce ideas, and we try to facilitate getting things happening amongst other groups. And try to keep ideas and threads of ideas fed and facilitated, by and among groups like VOCAL-NY and Rise and Resist, and Housing Works. And then we also kind of are a place that corporations and art collectives and educators reach out to, to get stamps of approval or criticisms. Another big thing we’ve done that’s unique is that we have school groups come and do ACT UP seminar-style meeting attendance. And those have been fun to participate in.
Wilder: Great. So, my understanding is that there was recently a surge in donations to ACT UP New York, as well as the online purchases of ACT UP T-shirts and other items, after ACT UP New York cofounder Larry Kramer died. Why do you think this happened?
Fureigh: I think part of it is, you know, just the deep association between Larry and ACT UP, and that Larry was always compelling people to do more and keep fighting. And I think that since everyone has been staying home and—you know, because, see, Larry obviously died a couple weeks ago now, but feeling—everyone has kind of been feeling stuck at home, and maybe a little bit disempowered in some ways. And I think that giving to us is a way to do something that can be done remotely and safely.
I also want to say that those donations have wound up being kind of a windfall. Because of COVID-19 this year, Broadway Cares/Equity Fights AIDS gave out fewer grants than they normally do. ACT UP normally gets a grant from Broadway Cares that counts for a very high cut of our operating budget—sometimes as much as half. And we didn’t get our grant this year because of COVID-19—which we understand. But, you know, we had sort of a budget shortfall. So, this has been a windfall for us in some ways.
Wilder: Are there any specific plans for that money that was raised as a reaction to Larry’s death?
Fureigh: I can talk about what we were going to do with our Broadway Cares grant that we applied for, because those are the things that we were having budget shortfalls for.
Our planning: We had asked originally for money to do more education, teach-outs and teach-ins. We’re still planning to do those as soon as we are allowed to do them safely.
We had also asked for money for our Crystal Meth Working Group, which had planned on doing a series of forums and seminars and webinars about the crystal meth epidemic in the Black and Latino community, and how it dovetails with HIV. And also, just sort of our standing, ongoing campaign against HIV prevention and treatment price-gouging.
Wilder: Great. After Larry Kramer’s death, ACT UP New York quickly put a call out to the community to gather at the AIDS memorial in the Village to remember him. Can you tell me more about that? How did that happen? It was amazing that it happened so quickly.
Moore: I just wanted to answer this question, since I was actually at the memorial. Our member Jason, he was the one who organized everything. He even had this amazing banner that had been made overnight that we were able to display during the memorial. I think people—Larry was a person of importance to so many people, especially people in the gay community, for the past 30 years. And when someone dies, for a lot of people your first instinct is to reach out to your community and just process that grief together.
I believe that the memorial was an amazing experience because we all got a chance to do that. And I think it was even more needed since so many people, due to COVID, have been isolated in their homes and cut off from their community.
Wilder: There were lots of speakers. From the Facebook Live that ACT UP New York had, it looked like folks from all walks of life. Saw a lot of, you know, kind of old-timer ACT UP New York alumni. You could see Ann Northrop was there, and some other folks. So it was really great to see that.
It sounds like ACT UP has been able to kind of power through despite COVID-19, and is continuing to stay engaged with their activism. I’m just curious: If people want to get involved with ACT UP New York right now, how would they get in touch with someone? Where could they find information about how to plug in?
Moore: Well, you can always reach out to us on our social media feeds. I and the rest of the social media team are really good at getting back to people. We have our firstname.lastname@example.org email, where you can send [an email to us].
We’ve been hosting periodic onboarding meetings for people, so that they can—they do that virtually. It’s like a training with Annie. And then after they go through that process, we let them into our general meetings that we’ve been doing through Zoom. This way, we can weed out any trolls. But normally, you can just come to any meeting at the center, every Monday at 7.
Helmke: I’ll add that, of course, [you can visit] the website. So actupny.com or .org can direct you to our website. And messages can be left there. You can also buy merchandise there, too—hint, hint.