Social Justice & Community
New book explores social impacts, public health lessons from Peru’s fight against AIDS
Assistant Professor Justin Perez’s latest book focuses on local engagement with HIV prevention efforts in Peru during the early 2010s. During this time period, as global health leaders began to envision an “end of AIDS,” the course of the epidemic in Peru took a turn for the worse.
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UC Santa Cruz scholar Justin Perez is an assistant professor of Latin American and Latino studies whose research focuses on how the ongoing global AIDS epidemic shapes the lives and social worlds of the communities most vulnerable to it. His latest book, Queer Emergent: Scandalous Stories from the Twilight of AIDS in Peru, explores the contradictions that have emerged between public health objectives and the experiences of at-risk people across Peru’s recent history.
AIDS, or acquired immunodeficiency syndrome, is caused by the human immunodeficiency virus (HIV), which is primarily sexually transmitted. A major shift in the epidemic took place in the mid-1990s, when combination antiretroviral therapy was introduced. With these medications, HIV/AIDS was no longer a death sentence; it became a survivable chronic illness, for those with access to treatment. After an effective scale-up of treatment to communities around the world in the 2000s, worldwide progress in the fight against AIDS had advanced so much that by the 2010s, some global leaders envisioned “ending AIDS” by 2030.
But Peru’s fate began to diverge sharply from that vision. From 2010 through 2023, data from the Joint United Nations Programme on HIV/AIDS show that, while new HIV infections declined 39% globally, Peru saw an 81% increase, erasing decades of local progress in controlling the spread. The number of AIDS-related deaths in Peru continued to decline, thanks to antiretroviral treatment, but the number of people living with AIDS and relying on these costly medications sky-rocketed.
Just as demand for antiretrovirals was growing in Peru, international funding for treatment dried up and shifted toward preventative measures to address adverse social conditions. This shift stemmed from the assumption that the bulk of global medication access needs had already been met.
“In the 2010s, optimism about the end of AIDS was being used to determine what kinds of goals and interventions to use around the world,” Perez explained. “So there were a lot of paradoxes and contradictions that emerged in Peru during that time because of this worsening localized epidemic that didn’t correspond with the global story of the decade.”
Addressing an emerging public health crisis
Global health experts attribute the rapid growth of Peru’s HIV epidemic to a complex set of factors, including limited sexual and health education, low condom use, patterns of high-risk sexual practices, international migration of people living with HIV who were seeking treatment, and limited health services for remote Indigenous communities in the Amazonian region, where the country’s epidemic had increasingly begun to spread.
To study these issues, between 2014 and 2015, Perez spent 15 months embedded in cities across Peru’s Amazonian region to see how communities engaged with HIV-prevention efforts, and how those efforts intersected with people’s everyday lives. In Peru, the AIDS epidemic is highly concentrated among certain vulnerable populations, with the condition affecting more than 30% of transgender people, 10% of men who have sex with men, and 1.3% of sex workers, according to United Nations data.
HIV-prevention efforts in Peru, and elsewhere around the world, often focus on decreasing discrimination and stigma against these groups. That’s because fear resulting from social stigma can prevent people from seeking diagnosis or treatment, which can further amplify the transmission of HIV.
“Groups that are already marginalized have also been at the highest risk of acquiring HIV infection since the beginning of the epidemic, and that just compounds the discrimination and stigmatization that they face,” Perez said. “People might not go to the doctor out of fear that they would be discriminated against and not get the care they need, or they might be afraid to get tested, because of how a positive result might impact their ability to keep their business going, or their social and familial relationships. In smaller communities, having your status disclosed can have a tremendous impact on crucial aspects of people’s lives.”
Prevention efforts face cultural-relevance challenges
Removing societal barriers to access for testing and treatment is essential for slowing the spread of HIV, so Peru introduced programs specifically to address homophobia and transphobia and to support the human rights of gay and transgender communities. But one of the challenges Perez’s research uncovered is that, because of cultural differences, not everyone who’s at higher risk of acquiring HIV in Peru identifies with the globalized labels of “gay,” “transgender,” or “sex worker” that are often used in programs for HIV prevention.
“My interest is in understanding how people inhabit, contest, and reconfigure the terms and categories that come along with global HIV interventions.”
-Justin Perez
In the Amazonian region of Peru, for example, Perez found that many gay men and transgender women maintained romantic and sexual relationships with men they called maperos, who considered themselves heterosexual. These relationships also often involved transactional sex practices—like the exchange of small gifts or favors, which were colloquially called peches—but participants did not consider themselves “sex workers.” While some programs attempted to reach people engaged in these practices, they often failed to do so in a culturally relevant way.
“Increasingly, HIV-prevention work is beginning to cast a broader net to target transactional sex practices that don’t neatly correspond with sex work, but there are some moral assumptions that often come with that about what it means to have meaningful sex,” Perez said. “In Peru, AIDS programs were trying to compel people to cease transactional sex and inhabit monogamous relationships, but that just didn’t reflect the richness of people’s social lives in the region. So we saw some underlying tensions resulting from that.”
Perez’s book explores how the local community engages with the moral assumptions, globalized categories, and technical terms of global health, especially in situations where they don’t map neatly onto the lived realities of local communities impacted by HIV/AIDS.
“In my book, rather than try to settle the matter, or adjudicate the ‘right’ term, I try to think about how these contradictions themselves are a crucial part of peoples’ everyday lives,” he said. “My interest is in understanding how people inhabit, contest, and reconfigure the terms and categories that come along with global HIV interventions.”
Struggling to be heard
Another important strategy in Peru’s HIV-prevention efforts was encouraging gay and transgender people to fight back against social stigma by sharing their experiences of discrimination and the harms it causes.
In studying this approach, Perez noticed that some queer communities in Peru have traditionally had the most success in getting attention for their grievances by making their stories “scandalous.” This usually involves dramatic embellishment that adds entertainment value to stories, making others more willing to listen. But as gay and transgender people in Peru began trying to share their experiences of discrimination through official governmental institutions and reporting processes, storytelling traditions that had previously served these groups well in social settings began to backfire.
“When people sought to file discrimination grievances, their stories were sometimes not being taken seriously,” Perez said. “Police officers or others would assume that someone was just being scandalous and then dismiss or minimize their legitimate claims. But in other contexts, these same scandalous stories have real power to meaningfully challenge and subvert pervasive transphobia, homophobia, and state-sanctioned violence.”
Perez observed that the level of consideration government officials gave to stories of discrimination seemed to vary in alignment with gender, racial, and ethnic hierarchies in Peru. In other words, discrimination itself seems to be a barrier for the most vulnerable groups in navigating the official discrimination reporting processes.
Toward an uncertain future
In the time since Perez’s research took place, new medications for pre-exposure prophylaxis (PrEP), which can be taken preventatively to avoid becoming infected with HIV, have been made commercially available in Peru. These medications are a potential game-changer for HIV-prevention efforts, but their rollout in Peru has been slow, despite the fact that the country served as a site for clinical trials. Meanwhile, the spread of HIV has continued to grow within Peru, to the extent that the country is now facing widespread shortages of essential antiretroviral drugs.
To make matters worse, funding freezes and program cuts associated with the Trump Administration’s efforts to close the United States Agency for International Development (USAID) have led to significant disruption in treatment and preventative services for HIV/AIDS in Peru, across Latin America, and around the world. This could potentially result in the deaths of 6.3 million people globally in the next four years, according to the United Nations.
While concerns around funding uncertainty continue to play out, one thing is already quite clear: the world is not on track to end AIDS by 2030. The challenge of this epidemic will instead be passed along to the next generation. Perez prepares UC Santa Cruz students to take up that mantle through a class he teaches, called LALS 55, AIDS Across The Americas.
“If students are interested in these decades-long transformations in the global response to AIDS, then I definitely encourage them to consider taking the course,” Perez said. “Teaching this class really helps me continue to stay on top of what’s happening at this moment, including ongoing changes resulting from shifts in the U.S. role. There are many useful concepts, frameworks, and theories that can help us understand what’s happening in real time, and that’s what I want to share with our students.”