At 2 a.m. on a warm night in April 2007, Anselmo Fonseca—a leading AIDS activist in San Juan, Puerto Rico—was awakened by a call from a crying woman. Her name was Yolanda, and two days earlier her brother Ariel, who was living with AIDS, had become terribly ill. Yolanda and her mother had checked him into a local clinic. But they learned that he’d been transferred, without their knowledge or approval, to a hospital. The reason? The clinic doctor who’d first seen Ariel had pronounced him “rotten” and refused to treat him. When Yolanda reached the hospital, she found that the situation there was no better. Ariel had been placed in a tiny, hot room with a broken ceiling fan and was left unattended by doctors and nurses—who, Fonseca believes, were afraid to touch Ariel for fear of contracting HIV.
When Fonseca got Yolanda’s call, he immediately set to work on Ariel’s behalf. Having advocated for people living with HIV in Puerto Rico for almost a decade, he lobbed calls to his network of activists, politicians and government officials. Within hours, he got Puerto Rico’s secretary of health on the phone and explained Ariel’s crisis, employing the trademark Fonseca mix of outrage and logic. The next day, the hospital finally ordered Ariel’s meds, which he hadn’t been receiving. But two days before they arrived, he passed away.
Ariel’s story is but one example of the hundreds of Puerto Ricans who lose their lives each year to their homeland’s AIDS health care crisis, which has devastated the island for more than 10 years. The AIDS prevalence rate there is almost twice that of the mainland, and positive people are going without services and medications. Yolanda and Fonseca typify the many family members, friends and activists who are forced to face the crisis each day—as they lose loved ones and watch a community crumble because of HIV stigma and a lack of infrastructure to care for and treat people in need.
That’s why Ariel’s death hardly surprised Fonseca. Mention the words “Puerto Rican AIDS crisis” and everyone— from the 11,000 Puerto Ricans estimated to be living with AIDS, to the doctors and nurses working in the island’s hospitals and clinics, to Washington, DC, officials who direct funds for services to the island, to activists both in the States and in Puerto Rico—invariably sighs. It is a sigh of disgust, an acknowledgement that the problem has no discernible solution—at least not anytime soon.
The crisis is complex: an ongoing problem with injection-drug use; a lack of services for positive people, especially in rural areas; crippling stigma around the behaviors that lead to HIV infection; a deep-seated debate about the island’s status as a U.S. territory; and the disappearance of federally allocated HIV/AIDS funds.
Year after year, rallies have been held, letters have been written and pledges have been made. AIDS advocates have proposed and implemented a number of short- and long-term solutions. Yet blame is placed on one party and responsibility is then shifted to another, while HIV infection rates on the island, which is a U.S. territory with little say in Washington, DC, and no formal congressional representation, soar. Activists and people living with HIV feel abandoned both on a large scale—from the federal government—and on a very individual and personal scale, as in the case of Ariel, left alone in his hospital room. Sandy Torres, an activist who runs a community-based food program for HIV-positive people on the island, put it this way: “Who cares about Puerto Rico?
Hola, welcome to Puerto Rico,” says Fonseca, leaning from the driver’s seat to kiss me on the cheek. “Here in Puerto Rico, we kiss everyone hello.” As we zip through the streets of Old San Juan, a man selling trinkets and water hobbles toward the car. “He’s a PWA [person living with AIDS],” says Fonseca. “You know him?” I ask. “Yes, his name is Bill.” Anselmo Fonseca knows everyone. He was diagnosed with HIV in 1995 but says he’d known he was positive a few years before that, when his partner died of AIDS-related complications in 1991. Born and reared in New York City, Fonseca traveled back and forth to Puerto Rico, but having fought a post-diagnosis depression, he decided in the mid-’90s to build his life on the island. Growing up in New York gave him a perspective on the relationship between Puerto Rico and the United States, which has informed his activist work.
“Being in the States…there was an abundance of opportunities; here [in Puerto Rico], it’s just the opposite,” he says.
In 1999, Fonseca and his current partner, José F. Colón—another well-known Puerto Rican AIDS activist—started Pacientes de Sida Pro Politica Sana (AIDS Patients for Sane Policies), an advocacy organization for people living with HIV. The group was founded in the late 1980s as a response to Puerto Rico’s first brush with mismanaged HIV/AIDS funds. In 1999 and 2000, several former officials of the San Juan AIDS Institute were convicted of stealing more than $2 million of federal AIDS funds for personal and political gain while they were in office from 1988 to 1994. The case was shocking, but Fonseca says that the true outrage was the public’s and media’s misplaced focus on its political ramifications—such as whether the scandal would hurt then-governor Dr. Pedro Rosselló.
“The real victims were patients that died and their families,” Fonseca says heatedly. He and Colón picketed outside the trials, holding demonstrations and shouting, “¡Mas que pillos—assasinios!” (“more than thieves—assassins!”).
“Pacientes de Sida Pro Politica Sana was created out of a need to refocus [after the] San Juan AIDS Institute scandal,” says Fonseca. The group is client-focused, providing support and care referrals on the island and to Puerto Ricans living in the States. Though the group does not provide direct clinical services, many positive people rely on its immense networks for linkages to care. Fonseca says some members of the group have even worked together to create a surplus of unused medications, saved up to be used in emergencies.