"We Have To Change the Rules": What AIDS Activists Can Teach Us About the Covid Pandemic

A conversation with current and former ACT UP activists.

Ria Modak

Act Up demonstrators protest on Fifth Avenue. Andrew Holbrooke/Corbis via Getty Images

Parallels between the AIDS crisis and the Covid-19 pandemic have long been noted by public health experts, AIDS activists and HIV survivors, from widespread governmental failures in disseminating accurate information about the disease to global inequities in treatment access. Crucially, Black, Brown and poor people in the United States, as well as communities in the Global South most harmed by pharmaceutical monopolies, have been especially at risk during both global health crises. The systemic racism, homophobia and transphobia that runs rampant within the American healthcare system has worsened the devastation caused by both crises, particularly for queer people of color, who, for example, are twice as likely as straight white people to test positive for Covid-19. Globally, wealthy nations have created a system of vaccine apartheid, hoarding vaccine doses while increasingly deadly variants of the coronavirus continue to claim the lives of millions in low-income countries.

While health advocacy organizations have urged the federal government to learn from the HIV/AIDS crisis to more effectively respond to the Covid-19 pandemic, both within America and abroad, many HIV/AIDS organizers argue that the government has now failed twice in its responsibility to the nation’s — and the world’s — most vulnerable people.

In These Times spoke with José De Marco, an activist with ACT UP Philadelphia, and Asia Russell, executive director of Health Global Access Project and former ACT UP Philadelphia organizer. Founded in March 1987, ACT UP has played a monumental role in improving the lives of people with AIDS through direct action, medical research and legislative advocacy. The organization has continued to fight for equitable access to healthcare for more than two decades, applying the lessons learned from the peak of the AIDS crisis to the Covid-19 pandemic. As Russell says, People living with HIV are at the forefront of movements challenging the Biden administration to secure a people’s vaccine.” 

De Marco and Russell have each been involved with HIV/AIDS organizing for the past 25 years. They spoke to In These Times about the connections between the AIDS crisis and the coronavirus pandemic, the role of white supremacy and the global pharmaceutical industry in producing and upholding public health catastrophes, and what the U.S. government should do to work towards global health justice. 

Can you speak about your time organizing during the AIDS crisis? How were you drawn into the movement?

José De Marco: I have been HIV positive since 1988. I had a partner who succumbed to HIV in 1994, and in dealing with my being positive and his illness, it was really hard because I was just his total caregiver. When my partner died, I started volunteering at an organization called We the People, which was an organization run for people with HIV, by people with HIV. And from there, I went to ACT UP Philadelphia. When I started, my eyes were opened politically, and I became aware of a lot of things, and I was able to literally fight back. And that’s what I did.

Asia Russell: I started AIDS activist work as a member of ACT UP Philadelphia in 1995. That’s when José and I first crossed paths. People living with HIV, leaders in that movement, were educating me about how to use people power to win bold campaigns for life saving treatment access. 

Do you feel like your role as an AIDS activist and educator has allowed you to understand the pandemic in a deeper way?

José De Marco: Yeah, it’s opened my eyes to a lot of things outside of my queer little world. I identify as Afro-Latinx, so being a queer person of color, I was always forced to see everything through a racial lens. It’s even more intensified in 2021. All the social determinants and social inequities that are generating HIV infections, the same inequities are also generating Covid infections, and they’re generating mass incarceration. 

For instance, housing is an issue. It’s not only in Philadelphia, it’s nationwide. And housing forces people to live in the street. Housing forces people to do many things in order to survive. Things that people never thought they’d have to do in order to survive, like survival sex — not the kind of sex where you consciously make a decision, I think I’m gonna do sex work.” No. It’s like you’re forced to do sex work. I see this with a lot of trans women of color. I see this with a lot of kids who have been thrown out of their homes. People are forced to steal and shoplift. And these are the same issues that generate HIV and generate incarceration. Poverty is violence, you know, people do what they have to do when they’re poor. 

And you see the same inequities around Covid. People that are homeless have no access to the vaccines, they don’t have the access to a roof over their head so that they can socially distance. I mean, that’s how I see it as a person organizing street activists, that’s what I see. 

Asia Russell: We’re in a moment now where we’re talking about the same structural forces driving Covid-19 vaccine and treatment apartheid, where we had discussed medical apartheid 20 years before during the AIDS crisis. The Covid-19 crisis must be responded to as a global catastrophe, not something that is confined to any arbitrary border. That requires accountability of the Biden administration, not merely for what’s taking place in the United States, but for what is taking place around the world. We learned that through the prism of the AIDS pandemic, and it could not be more true for Covid-19. People living with HIV are at the forefront of movements challenging the Biden administration to secure a people’s vaccine. 

The rage, the evidence and the scientific expertise of the model of AIDS activism that José taught me is exactly what needs to be deployed now, and still needs to be deployed by the way for the AIDS epidemic. We are not finished with our work in confronting and defeating the AIDS pandemic. Our analysis is that we only make our efforts to challenge the AIDS crisis stronger by mobilizing to confront Covid-19 inequities at the same time.

Where do you see the connections between the AIDS crisis and the pandemic today as two monumental public health catastrophes? Are there similarities in how multinational pharmaceutical companies and the U.S. government have responded to the respective crises? 

Asia Russell: The system through which medicines and vaccines are brought to the market is based on at least 20 years of monopoly rights being given to powerful pharmaceutical companies.The system has an array of incentives that generate these inequities. The incentive for Pfizer, for example, is not just to protect its monopoly on an mRNA vaccine, literally at the cost of billions of lives, but also to grow its profits. Right now, it’s fighting like hell to secure rich countries buying additional doses to be used as so-called boosters. Because for every dose they sell in a wealthy country, they can charge $24 compared with a tiered, not-for-profit price in a poor country. The system is functioning when poor countries get less and rich countries get what they do not need because it is driven by these extremely inefficient and dangerous monopoly powers.

Some people say that this is a sign that our system is broken. In fact, the system is functioning very well. The issue is that we have to change the rules. This inequity that we’re witnessing right now is an example of something that happens on a much less grand scale around us that many people experience every day, including in the United States. You can take the example of something as basic and as widely used as insulin and watch the trajectory of price-gouging from pharmaceutical companies over the years. You end up seeing cases of people in the United States rationing insulin because of their inability to cough up sufficient funds to the point of death. So that is the system. The system is not broken, it’s working. We need a different system.

José De Marco: It’s amazing how quickly the vaccine was created and made available, for someone that remembers ACT UP, especially ACT UP New York and ACT UP Philadelphia, when we were all stronger organizations, fighting with pharmaceutical companies to have the drug. I think that the waiting time was seven years before drugs could be actually approved from the Food and Drug Administration. And it just proves to me that the government can do anything it wants to do whenever they want to do it. If they really had wanted to move on HIV and AIDS, they could have moved on it a long time ago. 

But I see some of the same issues around Covid. I’m looking at it from a social determinants level, you know. And it’s disturbing as a person of color, and I blame this at the feet of white supremacy, that we’re afraid of vaccines because we have a distrust of people in medicine, and it’s well founded. The mistrust of white medicine has made a lot of people of color really suspicious. And you can blame this directly on white people for doing this shit and not dismantling it a long time ago. 

What should the United States government be doing or should it have done differently during this pandemic than it did during the AIDS crisis? What needs to happen now for marginalized communities to start to recover from this pandemic?

José De Marco: In the very beginning, they did nothing. Ronald Reagan knew about HIV. He knew about AIDS. He said nothing. He did not warn people. He did not say, protect yourself sexually when you’re having sex, use a condom, none of that stuff, no harm reduction stuff. This white, heterosexual cisgender government did nothing until it was too late. 

And I see the same things for Covid. You know, like, all of that crap Trump did not say and all of that blustering and bullshit that he did. It generated — and it’s still generating — Covid infections, especially among his supporters that are actually running around not being vaccinated because they’re looking to him. It’s the same thing. In the beginning, he did not warn people about Covid the way that he should have. I see those two similarities. 

I don’t know if HIV could’ve been stopped but it did not have to reach the same proportions as it did if they had just warned people. And I believe it could have been the same thing with Covid, if people had got accurate information from the very beginning that was not presented in a partisan manner from an asshole president.

Asia Russell: What the Biden administration must do is live up to the promises that Joe Biden made as a candidate. Specifically, that looks like the United States. funding and implementing a plan to vaccinate the world. Nothing short of that will get us out of this terrifying nightmare. It’s what’s morally and ethically necessary. That starts with eliminating the artificial scarcity of vaccines, particularly mRNA vaccines. We need to flood the market with vaccines. And that is only possible if there is forced transfer of technology from Pfizer and Moderna, to producers in Africa, in Latin America and the Caribbean, across the continent of Asia. Big pharma does not want that to happen, because decreasing scarcity means prices go down. So that’s where we need leaders to step in and act in the interest of the common good.

There also need to be service interventions, like investing in community health workers and supply chain logistics to get vaccines into communities. It’s not only about vaccination, it’s also about equitable access to life saving treatment, to get oxygen to people who are gasping for air. Biden needs to prioritize solving these life and death problems. 

And then, ultimately, there needs to be sufficient investment, in preparing for the next crisis, so that it does not happen this way, so that we have a system of sufficient funding from the U.S. government to countries on the front lines that will suffer the most. That gets called pandemic preparedness, pandemic response, global health security, it has many names. We think about it as health justice.

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RIA MODAK is a senior at Harvard College and was a summer 2021 editorial intern at In These Times.

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