In the early years of the AIDS crisis, government inaction hit Black and Brown communities hardest. ACT UP (AIDS Coalition to Unleash Power) rose in response, demanding accountability. Within it, the Latino Caucus formed: a group of queer and trans Latinos, immigrants, women, and frontline workers who took survival into their own hands. They translated critical information, moved underground medication, and led actions across New York, Puerto Rico, and beyond.
Founded in 1990, the Caucus didn’t just fight stigma and systemic neglect—they also challenged the whiteness of ACT UP itself. Their activism helped change clinical trials, public policy, and how AIDS was understood in communities of color. Now, 35 years on, designer Willy Chavarria and A Magazine Curated By’s editor-in-chief Blake Abbie bring surviving members—César Carrasco, Fernando Mariscal, Gonzalo Aburto, Luis “Popo” Santiago, and Rita Cordova-Padron—back together in conversation.
To mark the issue’s release, A Magazine Curated By and Chavarria have created two limited-edition T-shirts. The first, available for preorder today, benefits the National Day Laborer Organizing Network. The second, an archival reprint of the original ACT UP Latino Caucus tee, drops in September, with proceeds going to ACT UP and its fight for HIV/AIDS justice.
Originally published in A Magazine Curated By’s “Love Commandments” issue, guest-edited by Chavarria, this roundtable appears here on i-D for Pride Month—in recognition of the Latino Caucus’s legacy and its urgent relevance today.
Members present:
Latino Caucus: César Carrasco, Fernando Mariscal, Gonzalo Aburto, Luis “Popo” Santiago, Rita Cordova-Padron.
Others present: Atom Kwan Arce, Blake Abbie, Catherine Gund, David Ramirez, Ivy Kwan Arce, Willy Chavarria.
Willy Chavarria: First of all, thank you guys for coming together. This is the most amazing thing. I’m really grateful. I discovered ACT UP in the 1990s in San Francisco, which is where I was living. It was where it started, right?
Fernando Mariscal: It started in New York actually, but if you ask people in San Francisco, they’ll say it was there. All of us met in ACT UP. Our friendship is through ACT UP. That’s the connection and history we have.
WC: Among my friends and the people I was with, there was some resistance to ACT UP because it was so White. When I heard that there was the Latino Caucus, I thought: “Oh, well, I guess that never hit San Francisco.”
Gonzalo Aburto: The Latino Caucus was only in New York, but had an impact in many communities. We created the caucus because ACT UP, exactly as you mentioned, was quite White. We started as a committee by translating from English to Spanish, then from that the Latino Caucus was formed in 1990.
Fernando Mariscal: One thing with ACT UP was that you weren’t necessarily friends with each other. You would see everyone at the demonstrations, but there were cliques. What happened with us is that we had things in common: Some of us were immigrants, we spoke two languages, we had accents and we liked to eat the same food after meetings. At the same time, we realized that to have a voice and more power, we needed to separate from the larger group and become something autonomous—a caucus. According to the ACT UP regulations, if you were a caucus, you didn’t need to go to the meeting and ask permission to create actions. So we said, “We’re going to decide what we want to do, and we don’t need your permission.” Some people in ACT UP didn’t like it at all and resented it, especially when we decided to speak in Spanish during meetings. They asked, “Why would you do this? Why can’t I be in your group if I only speak English?” And we said, “Because we don’t speak much English!”
César Carrasco: It was politics of exclusion; we risked that, we have to own up to the fact. But also ACT UP was created spontaneously with people creating all sorts of committees and affinity groups to do different actions and concentrate on different issues.
GA: The first ACT UP demonstration was in Wall Street on March 24, 1987. As the stock market opened, ACT UP interrupted the opening bell of the New York Stock Exchange. This was the first time in Wall Street’s history that the market didn’t open on time.
CC: ACT UP’s approach was to mess up your public relations image. The strategy was that while they acted inside, there were hundreds of protesters—us included—outside to create havoc and bring negative media attention. We made a mess but were negotiating indoors at the same time to really get things done. And it worked. The price of AZT (Azidothymidine) went down. The same happened at the CDC and other demonstrations. ACT UP was instrumental in getting all the medications we take today approved faster. How long does it usually take for medication to be approved, 20 to 30 years?
GA: When the organization made a demonstration at the National Institute of Health, it was very important. They entered the building and threw color bombs. Some of the guys chained themselves to the door. They were taken to the police precinct—several of the members of the Latino Caucus were arrested (not just then, but several times). The mother of Ray Navarro, one of the first members of the Latino Caucus, attended the Latino caucus meetings and the Latino caucus demonstrations. She came almost all the time even while he was dying. She was here with us for a long time.
Catherine Gund: I brought Ray to his first meeting; we started DIVA-TV, making films of what we were doing at ACT UP. ACT UP had a really clear mission, and it was super effective because we protested for things that could actually happen. We went to the FDA and demanded they study a wider variety of drugs. We went to the CDC and asked them to change the AIDS definition, because it excluded too many people. Many of the women and people of color I know who were in ACT UP were there because it was a place where we could make change. Alongside us were these boys who’d never lacked anything in life—suddenly confronted with AIDS, they were deeply motivated. It gave them blinders because they hadn’t come from the same histories we had, from reproductive rights, civil rights or media activism. Through that, people realized something was happening. There were also so few women (around 25 women out of 2000 people) and people of color in ACT UP that we naturally stood out to each other. We would remember each other.
FM: ACT UP was successful because of good media communication. Without that, it wouldn’t have existed.
Luis “Popo” Santiago: It changed everything: the marches, the campaign, everyone had something.
FM: The Latino Caucus logo has an upside down map on it; the reason why was because we were different within the group of ACT UP—the majority of us were immigrants—and this was a way to say that we thought in a different way.
WC: How did you all join ACT UP?
CC: I came to the US from Chile in 1982. I joined ACT UP in 1988 and was in the media committee. I never quite felt I could be fully part of the organization, because of my personality and cultural issues. [Laughing.] In 1990, when someone called for the Latinos to create a committee, I attended the second meeting. I’m one of the early members of the Latino Caucus. It was during that meeting we voted to become a caucus, so we could be closed and allow people in on our own terms. It wasn’t a very popular decision, but we thought it was important to do the work we felt needed to be done.
WC: So you wouldn’t let some people in?
CC: No non-Latinos at first. Then we also decided to conduct our meetings in Spanish only.
LS: I joined ACT UP in 1990, too. I heard from my friend Moisés Agosto, who is also Puerto Rican and was a founding member, that there was going to be an action in San Juan, Puerto Rico in August that year organized by the Latino Caucus with local activists. I got excited because I feel strongly about my birthplace. That’s how I joined.
Rita Cordoba-Padrón: I’m also from Puerto Rico and had been involved in its National Independence Movement and in the campaign to support our freedom fighters. I joined ACT UP towards the end of 1988. I was already living in New York and working in the community working on HIV testing, reproductive health—as a healthcare worker, not a nurse.
LS: And as an activist.
RCP: Because I was doing activism for political prisoners and prisoners of war, fighting for human rights and the struggle for Puerto Rican independence, one of my roommates, Jose Santini, invited me to Gonzalo’s house for a meeting. At the time, I was working in the South Bronx, which was the epicentre of HIV then, in an organization called Health Force: Women Against AIDS. Now it’s called Health People. We worked with a lot of substance users, people in recovery and women. We started training women to become peer educators, promotoras, to do work from their homes, to run support groups, to do talks in churches.
Two of my uncles had passed away from HIV/AIDS. Then my sister and her husband discovered they were also HIV positive after being denied life insurance in 1989. I also have a brother who passed away in 2011. Most of us in this room have personal stories and are committed to the cause because of them. I have continued working in the community, supporting people dealing with HIV, homelessness or harm reduction. Now, I work at an organization in Brooklyn called CAMBA (Church Avenue Merchant Block Association), where I work in the HIV prevention unit and supervise women’s prevention services.
LS: My lover had AIDS and died in 1993. I also have a brother with HIV and one with AIDS. One of them passed away in 2001, one is still living, fortunately. We’re seven siblings in total, but three of us were gay and two were infected at that time.
RCP: This group, they became my brothers. It’s a long-term relationship. We are camaradas. When I joined ACT UP, the only woman involved was Patricia; I was the second one.
FM: Well, you’re stuck with us. We needed you. I was born in Peru and moved to New York in 1989. The first time I saw ACT UP was not here in New York, but at the fifth AIDS Conference in Montreal earlier that year. I had travelled there from Peru to do a presentation, as I was doing some early AIDS education in Peru. ACT UP stormed the conference. Soon after I moved to New York in December I joined ACT UP and I met you, César.
Here now, we are five, and there are probably five others in Puerto Rico and DC. But the Latino Caucus at a certain point was 50 to 60 people. The ones who are here are the ones that are still alive. There was a reason to respond, because people were dying, and you were affected directly.
GA: I came to New York in 1986. In Mexico, I was the founder of one of the lesbian and gay organizations. I joined ACT UP right at the beginning. My first action was the Wall Street demonstration. I went to the meeting the following Monday. And from there, the rest is history. One good thing about ACT UP: if you showed up, you were a part of the organization—you didn’t need to apply or ask for permission.
Every time I would run into Sean Strub, the founder of Poz Magazine, I asked him when he was going to create a Spanish version for two years. Finally I convinced him and became the editorial director for Poz en Español. Poz en Español was very important because we shared the stories of Latinos and Latinas living here in America; we published from 1996 to 2003. That’s something I’m very proud of. At the same time, I started a program on community-access TV here in New York, called Homovisiones, for which we produced one program a week for ten years, covering not just gay and lesbian Latinos but the broader community too.
The first person I met when I joined was Jose Santini, one of the founders of the Latino Caucus. The huge action the Latino Caucus did in Puerto Rico in August 1990 was very important—it was the first time people demonstrated openly on the streets, went to the governor’s house and to the cathedral.
WC: You mean it was the first time “gay” was out in the open in Puerto Rico?
RCP: Yes, it was the first time out publicly that big.
LS: There had been smaller groups before, but this one brought together the gay community, feminists and other activists. It was the first time gay people marched en masse to the governor’s house. In fact, the following year, the first gay pride parade began. That action cascaded into and was a catalyst to a lot of other events.
CS: The march in Puerto Rico was about AIDS, which brought AIDS out of the closet—just like we did in New York—for Latino community, bringing it out of secrecy, shame and crisis and into the open. The demonstrations and actions in Puerto Rico were fantastic, and they were all organized by us, the Latino Caucus. It was enormous, really huge.
FM: Puerto Rico was also one of the reasons we needed to create something separate within ACT UP. Also 1990 in Albany, New York, we disrupted the annual gala for all the politicians of Latino descent or who were Latino identifying in the state called Somos Uno. They had gathered to talk about how great their lives were and how good they looked—but had nothing on the agenda about HIV/AIDS. Disrupting their party was our way of letting them know this big issue in the Latino community was being ignored. The next day, some of the politicians inside said, ‘Would you like to talk to us and tell us why you did that?’ That opened up the conversation.
RCP: Our influence and some of our compañeros’ was that we were also in the front trying to provide some services, but we also had people who were at institutional organizations who ended up doing a lot of activist work too.
GA: Yes, but at that time, all the organizations that were supposedly working with the Latino community were doing almost nothing; they had no programs and were based in SoHo, while their clients mostly were from the Bronx.
CC: New York was the epicentre at the height of the AIDS epidemic. It was apocalyptic. In communities of color, it was even worse than in the general population. In the Latino community, like others, everything around HIV/AIDS was kept silent, as if it didn’t exist. Part of our work was to break that silence completely, to the point where it couldn’t be silenced or dismissed again.
GA: Earlier that year in June, before the series of actions in Puerto Rico that summer, the Latino Caucus participated in the National Puerto Rican Day Parade in New York. That was the first time that we marched together as Latinos, and it was very important because the event was broadcast live on one of the most important Hispanic television channels. One of the most important journalists was hosting that day, describing how important this parade was for the community as it highlighted the most important issues facing the island, which included HIV/AIDS and ACT UP’s cause.
FM: But sometimes we weren’t welcome. The second parade we organized was during the Hispanic Parade on Columbus Day. We decided to march there as ACT UP’s Latino Caucus, alongside the other Latino communities and received a permit. However the day before, we got a letter saying our permission was cancelled. Obviously it was because they realized the organization was about HIV/AIDS—but we marched anyway. I remember trying to enter the parade, and the police were called. They pushed us and said we couldn’t stay. We had flags from every country, each with the number of people who had already died according to the statistics. I was holding the Peruvian flag, which had a total of 900 lives written on it. Since they wouldn’t let us in, we marched on the sidewalk, in parallel, along 7th and 6th Avenues. And it worked, because people started wondering who we were and what those numbers meant. Many times we went against even the community, because we were considered disruptive—a little too left wing, but it’s true that we were.
GA: After that first time in the Puerto Rican Day Parade, some people working in the community centres called a meeting at the Puerto Rican government offices here in New York to complain about us trying to ‘impose a White agenda’ on their community, as HIV/AIDS was perceived as a White agenda.
LS: It was a form of homophobia.
CC: It was a way of justifying not doing anything about it. The AIDS epidemic in the Latino community was absolutely horrible, especially in poor communities. But our actions impacted places outside of New York, like Hartford, Connecticut where the entire Puerto Rican community in the town was dying of AIDS.
RCP: You know, the Episcopal Church created the first support group for people living with HIV/AIDS in our community, in the Bronx and Harlem. They did in their limited capacity—and often against their congregation. We had an effect because we were working in our community-based organization or doing other activist work in our communities. But did the Catholic Church do something? No. [Laughing.]
GA: We also participated in one of the biggest actions organized by ACT UP called the Day of Desperation. This took place on January 22, 1991, and we demonstrated all day. We started at seven in the morning at City Hall, then went to the Health Department, and finally to the office of Fernando Ferrer, who was the borough president of the Bronx. Marina, one of the women Rita had trained who was living with HIV, confronted Fernando Ferrer. It was significant, because while they were inside, we were outside explaining to people what was happening and why it mattered.
WC: Why do you suppose that is?
Ivy Kwan Arce: Because we succeeded in some ways, we fought for medication. With the first action at Wall Street and others following it, the goal was to reduce the price of AZT. That was the demand.
I actually went to ACT UP because I saw a poster in the subway which said: “Women don’t get AIDS, they just die from it.” And at the bottom: “If you have multiple partners or if you’re doing drugs, you should get tested.” So I did. At first, I couldn’t get tested because they didn’t have any tests in the office. And as a woman, they told me there was no need for me to take it. When I finally tested positive, they didn’t know where to send me. This was New York in 1990, the epicentre of the epidemic, and they didn’t have any resources. The doctor told me, “Why don’t you go back to the poster and try one of those places?” That’s how I found ACT UP. I walked into the room, and the men were much more knowledgeable.
There were very few women who were positive. I lost my job right away, because back then, they would report to HR that someone had cancer, HIV…
WC: Did you have to tell them at work?
IKA: No, they would just disclose it because the insurance would go up. There was no protection. ACT UP is the reason protection exists now. The HIPAA law is our work. It’s Luis’ work, actually.
GA: Some of those who fought for that are gone.
IKA: People forget this time when it was disclosable. They would even require us to give them a list of all our partners, so they could keep that list.
WC: How did you have HIPAA enacted into law?
IKA: In hospitals, they would share that information because a doctor might refuse to treat you. We fought that, systematically, even before fully realising it. Everything you see in HIPAA has a lot to do with ACT UP trying to stop it. We wanted to prioritise disclosure.
GA: In the beginning, even in 1986, most hospitals and clinics didn’t have areas for people with HIV. We saw the start of the epidemic, when people came for treatment and no one wanted to touch them or go near them. There was a Puerto Rican doctor, Gabriel, working at St Vincent’s Hospital, who was the first to start an AIDS ward. He was a hero in the epidemic.
RCP: I’d add that in our community, it wasn’t just LGBTQ+ people who suffered, it was also drug users. In 1989, the number of overdose deaths in the South Bronx was horrendous. The community did all the work around substance users through the Needle Exchange, which was a committee within ACT UP.
RCP: We got the law changed, so you couldn’t be arrested just for having an empty needle. Everyone was using the same needle, and they all got sick.
CC: It started by setting up tables on corners. For example, there was one across from the clinic where I worked in the Bronx. There was another in the Lower East Side. Users could drop their used needles in containers and get new ones. They had to bring the needles back. It was very visible and totally illegal. They were arrested many times and challenged the law. Luckily, when they went to trial, the judge ruled that it was a compassionate form of political action. Since then, the Needle Exchange has been legal. Now it’s indoors. If you go to a hospital with a Needle Exchange program, people can inject there safely and get needles at the clinic—they don’t need to go to a street corner. That was a fantastic accomplishment.
CG: Ray Navarro and I made a video called Bleach, Teach, and Outreach about how to clean, bleach and use your needle if you couldn’t get a new one. I think those films and videos were really important.
CC: Think about the deadliest months of the COVID epidemic in New York, with freezer trucks outside the hospitals. Now imagine if it only affected gay men, IV-drug users, patients, minorities—while the rest of society carried on like nothing happened. There was real alienation. Looking back at COVID, not everything was perfect, but a lot got done in just a few months—it was impressive.
WC: What’s ACT UP’s take on Dr. Anthony Fauci?
LS: Fauci, who was at the National Institutes of Health at the time we were making these actions, unlike many in the government who were defensive and rejected ACT UP, eventually sat down with the activists.
RCP: He was receptive to what was happening, which was important because none of their clinical trials had been inclusive; they were conducted with only White people. Thanks to him and ACT UP’s actions, women and people of color were finally included.
IKA: But I would add, “stakeholders” in this fight included the government too. They knew that if they continued in the same direction, the situation would get worse. But still, many of our demands were met with resistance for years.
CC: A lot of policy work was done by ACT UP, with people inside speaking directly to government officials. We had to spell everything out for them, explain what would be a better public health strategy, and even show them what would make them look good. Honestly, ACT UP was telling them what to do because they didn’t know themselves.
IKA: I also think we should not forget that we are communities, and people in government also had family members who were dying. That pushed them to try new approaches, which changed how clinical trials were run. Before, they waited for everyone to die before writing anything up, which was absurd. We said that it didn’t have to be that way. You could see when something worked for treatment and disclose it right away.
LS: That’s true. But I have to say, many diseases affected Black communities, and the NIH never responded because there was no pressure. The big difference with HIV was that many of the men affected came from privileged backgrounds. They were educated and had connections to the system, like when Peter Staley—the founder of the research and policy thinktank Treatment Action Group (TAG)—went and started demanding action, people like Fauci connected with him on a class level. They found a shared language. I truly believe that if HIV had only affected poor people in this country, the response would have looked very different.
RCP: The Ryan White Act, a law that provided care for low-income people with HIV/AIDS, is named after a little White boy—an innocent victim who wasn’t going to have sex or do drugs.
IKA: Luis is actually a co-founder of TAG, which was a very important committee, and part of ACT UP that had to leave because they couldn’t do this work which focussed on the actual treatment of HIV while everybody else had other issues with legislation.
CC: Later on, TAG were actually the ones responsible for the creation of PrEP and PEP.
LS: The good thing is that changes were made, like those in clinical trials, which are now very careful to include women, Black people and Latinos. That’s become a new standard. But with recent directives coming from the White House against DEI, some of these efforts to include minorities in research could be rolled back. Nothing is permanent.
GA: Majority Action Committee was actually a caucus too that included Black, Asian, Pacific Islander, Native and other peoples of color.
FM: That’s the beauty of ACT UP—all these different groups and committees were able to connect beyond the full organization and work directly with communities who spoke their language. Yes, someone like Peter came from a privileged background and could speak to Fauci because of his proximity to wealth, but it was the same for us: We went into churches in the Bronx and spoke Spanish, explaining that even if we didn’t belong to the church, we were part of the same community and could work together. What I like is that even after ACT UP stopped functioning as it once did, the effects continued. Even when we didn’t see each other, the structure kept going. ACT UP ballooned and evolved into something else.
CC: That’s very important. For example, that slogan on the subway poster Ivy saw—“Women do not get infected, they just die from it”—was a campaign because women weren’t included in the AIDS definition. That meant they were denied benefits and access to medical care. The women in ACT UP worked tirelessly to change the definition to include the opportunistic infections that affected women.
IKA: And it didn’t just help women, it redefined things for everyone. Before that, the definition of AIDS was loose, its symptoms weren’t clearly defined. People forget that. Insurance companies could easily deny you treatment. But after symptoms for women were defined, AIDS got a classification.
WC: Do you think that since ACT UP, there’s been another organization fighting for anything—especially now with what’s happening under the new administration—that’s been as forceful?
CG: People would be like: “Come over here, our caucus is doing something, film over here.” And we just knew we had to grab our video camera and shoot wherever, in all the demonstrations. It’s important to remember if something happens to be ready. And we were ready to show what was really going on. And when Black Lives Matter kicked off, people had been ready for years.
Black Lives Matter has brought a lot of attention, community and nurturing, helping people see things a different way, engaging with the media and always making sure that there’s an alternative to what’s in the mainstream. That was why I loved it, knowing how media had been used to create this movement, as well as the reproductive and civil rights movements too.
RCP: I think one important thing to note is that it’s very different to be a grassroots organization compared to receiving funding and becoming a community-based organization. Those are two completely different experiences. When you’re grassroots, you can defy everything.
CG: Initiatives like USAID or the progress we made globally fighting HIV and AIDS are now slipping backwards. As soon as you lose funding and treatment, HIV resurges.
FM: What made our experience different within the Latino Caucus was the rest of ACT UP, the White gay men of New York, didn’t always have the political background we had. I was involved in the political war in Peru before Congress; Luis was doing the same in Puerto Rico; Rita—we called her “Molotov”—was deeply involved in activism; César lived through Pinochet’s dictatorship; and Gustavo here was involved in the community in Mexico. That made a huge difference. We already knew the language of activism.
IKA: It’s easy to overglamorise ACT UP, but much of the work was done by individuals, working away on their own thing—many were. Legally, you have the right to take any medication you believe might save your life, so we took that and helped people import medication. Sometimes, we were even trafficking it into the country. We followed what worked. When we saw results, we fed it back to the NIH. They threatened to jail us for what we were doing, but we just brought in more.
CC: We organized the buyer’s club.
LS: One initiative also that started with someone in the Latino Caucus was sending medication to Latin American countries.
IKA: Nurses would actually clean out medication from hospitals, and we would take it to other countries that needed it. Anytime anyone was travelling, they would take it. We knew how to try to survive.
FM: The irony is that if people had died, we would collect their medications here and take it to someone and say, “These are the remaining medications of ten people who died. Distribute it to whomever needs it.”
WC: I think it’s so interesting how ACT UP seemed so rogue, so off the grid, so rebellious, not part of the system in any way. Now all these things ACT UP worked for are being stripped. I wonder: What happens now? Where’s the fight, and who’s doing the fighting?
CG: It’s happening with reproductive rights right now, because it was all legal, and now all of a sudden it’s not. My mother literally fought for women’s rights so that we would have some autonomy and some agency. But with that, people are still fighting in the exact same way. There are doctors who are providing medication, and even there was a judge who let a refugee go out the back door because she knew that ICE was right out in front of the courthouse. There are ways that people are resisting and standing up.
LS: But there’s nothing organized in the same way. People had to feel it. We started feeling the death and disaster before reacting. Right now, they’re making these decisions: They’re cutting funding. They might restrict laws. But we’re not really getting the things we ask for. So if this continues, I believe something is going to react. What that is going to be, it’s difficult to tell. But it may be like ACT UP or it may not be like ACT UP.
IKA: ACT UP constantly had people coming and going, with people dying and others joining, which made it hard to keep the conversation going. It’s really important, for young people or any of us, to look at it financially—because it’s not just about protesting. Being prepared to navigate those relationships and to have legal and financial options is really important. One of the best things about being in ACT UP was problem solving. We had a lot of failures, but in those failures, the trying was so important.
FM: I think it has to do with the new generation. They want to cover everything at once. So if you organise a demonstration tomorrow and forget to invite community XYZ that’s fighting for something else, you’re seen as not being inclusive. Inclusivity is good, of course, but in some ways it prevents developing a clear goal. ACT UP worked because even though we had political or religious differences, there was a clear goal. We knew exactly for what needed to be done.