José Colón talks about the birth of Pacientes de SIDA Pro Politica Sana & its continued need
by Patricia Nell Warren
Photographed Exclusively for A&U by Sean Black
When José Colón was in Los Angeles to receive Alianza’s “Community Hero” award on September 19, he and his partner Anselmo Fonseca visited me at the Wildcat Press office. For years the two Puerto Rican activists have been my friends, but we had never actually met. So we sat in the shady garden for a long-overdue visit. I strain for journalistic neutrality here, because they are personal heroes of mine. Their AIDS activism has broken the mold—they pioneered in battling some extremes of that healthcare inhumanity and corruption that has the United States in such an uproar today.
Everything about fifty-six-year-old José is “big.” He is a big barrel-chested guy with a lion’s mane of gleaming iron-gray hair, plus big Latin hand gestures that punctuate his war stories. A foot problem has him walking with a big cane, which he also brandishes for emphasis. That day José was wearing a tropical shirt whose big flowers were painted in somber hues—appropriate to the AIDS scandal that made him an activist.
As a U.S. territory occupied in 1898, the Commonwealth of Puerto Rico should rightly get its fair share of U.S. health and human-services benefits. Yet its four million inhabitants have suffered tragic neglect by our government. Puerto Ricans get only limited protection under the U.S. Constitution, plus little representation in Congress, and can’t vote in federal elections. Hence a festering situation where Puerto Rican healthcare has decayed even more disastrously than on the mainland. As America debates President Obama’s plans for healthcare reform, most American politicians act like they don’t care what happens in Puerto Rico.
I asked José to tell how he became that celebrated activist. He grinned and said, “When I was young, I was actually very timid, a shy guy. And everybody called me the valetudinario. That’s a Puerto Rican word for somebody who is always sick.”
José was born in San Juan in 1952. As a kid, he loved basketball and baseball, but couldn’t play because of severe asthma. Denied an active outgoing life, he turned inward to books—suggesting that he might spend his life in the world of Hispanic literature. His “aunt-mama” Panchita supported his interests. So did other favorite aunts, Angela, and Lolita, who lived in Washington, D.C., and worked in the Pan-American Health Organization. Every summer José went north for an aunt visit, and soaked up the capital’s political and international energies.
Throughout his childhood years, José was also plagued by allergies. He had to wear white cotton anti-allergy clothes. Since he was even allergic to his own hair, his head was shaved. His doctor called him “the most allergic person I’ve ever seen.”
“But through it all,” José said, “I’ve been sustained by my deep Catholic faith.” With time and treatment, his allergies waned.
After graduation from the University of Puerto Rico, José went to Spain in 1982 for graduate studies. With him went his beloved partner, Eduardo Aramis. When José worried about how conservative Spanish locals might react to a gay foreigner couple living in their Toledo neighborhood, a priest advised him sagely, “Just put a big statue of a Madonna and Child inside your doorway…and nobody will bother you.” It worked. While in Spain, José published his first book of poetry.
But by then, Aramis was ill with what turned out to be AIDS. José abandoned the studies, and took his partner home to Puerto Rico.
This was when the two men had their first shocking encounter with the greed and criminality that had rapidly collected around federal AIDS funding. When Eduardo developed a lung infection and Kaposi’s sarcoma, he went to the San Juan AIDS Institute for help. But he was denied treatment, even though AIDS drugs were available in Puerto Rico. Later, at the Hospital Auxilio Mutuo, Aramis was assigned to a doctor, Jorge Garib. But the doctor saw Eduardo only once, and bluntly told him that he had a fatal pneumonia. No other doctor would see Aramis. In 1991, José’s partner finally died.
I asked José about the turning point towards activism. He said, “It didn’t happen all at once. After Aramis died, I remained in a deep depression, a complete angst, for the next two years. But finally one day I said to myself: No more. This is not what I am supposed to do.”
One day in 1995, when José was eating lunch at a San Juan hotel, he noticed a younger man sitting nearby and said to him, “I hate to eat alone. Will you join me?” The younger man was Anselmo Fonseca. He too was HIV-positive and had lost a partner to AIDS. Shortly they were a devoted couple. Later that year, when José developed pneumocystis pneumonia and the cocktail treatments were first made available, they battled the uncaring system and got treatment together. José was now forty-three, and Anselmo thirty-seven.
Their business was teaching private English classes—they had clients all over the city and were making good money. But their outrage grew as they learned of other PWAs dying because treatment was “unavailable.” A few officials with a conscience joined them, and a complaint reached the FBI.
A key moment came on March 10, 1999, at 2:30 p.m. José and Anselmo were hearing the first details that the FBI investigation had turned up at the San Juan AIDS Institute. The fact was, Ryan White monies had been embezzled for personal use by assorted politicians, lawyers, and administrative medical personnel. These abuses happened because Washington had demanded no accountability on how these monies were spent, in Puerto Rico or anywhere else. U.S. writer/activist Wayne Turner would sum them up as “off-shore bank accounts, payments for luxury cars, jet skis, cash pay-offs to the Institute’s political benefactors, and for Dr. Garib, a personal maid—all using $2.2 million in federal AIDS funds.”
In that moment, José told me, “I turned to Anselmo and asked him, ‘Are you ready to do something?’”
For the next hour and a half, the two men blueprinted a community-based organization called Pacientes de SIDA Pro Politica Sana—AIDS Patients for Sane Policy. It would fight for equal access to care by Puerto Rican PWAs. In contrast to so many giant AIDS orgs that float on massive funding streams, this little org would take no federal money, no pharmaceutical grants, no large gifts from donors. According to the two men, it was funded by their personal savings and business earnings. Since nobody pulled their strings, they could call a spade a spade.
At 4 p.m., José and Anselmo faxed an announcement to the Associated Press. The phone started ringing, and José was asked if he would identify himself openly as HIV-positive—still a risky thing to do in Puerto Rico.
After a wave of FBI arrests, three groups of suspects, including San Juan AIDS Institute directors and administrators, went on trial. José had the satisfaction of seeing Garib sitting in the dock as a prisoner. He testified about what the doctor had done to Aramis.
Real progress took another year, plus growing, belated support in Washington, where a few Congressmembers and officials—including Attorney General Janet Reno—realized that these crimes against AIDS patients were happening in the U.S. as well. In 2000, with Anselmo, José traveled to D.C. to testify before the House of Representatives. Almost at the moment that Dr. Garib was being found guilty, the once-shy valetudinario was boldly barking at the House that the U.S. government ought to amend the Ryan White CARE Act to demand full accountability on spending.
Fourteen individuals, including Garib, got felony convictions and went to prison. Additionally, a handful of leading Puerto Rican politicians were tainted by links to the scandal, including a former Senator and the governor of Puerto Rico himself, Dr. Pedro Rosselló, whose office had allegedly received a shoebox full of cash.
“We went against the whole system and threw them down,” José told me, brandishing his cane in the air.
Since that day, Pacientes de SIDA Pro Politica Sana has stayed a watchdog on frauds and abuses. As the two men sat in my garden, they told of speaking at international AIDS conferences—of organizing a huge annual candlelight AIDS vigil at San Juan Cathedral. Today the Ryan White CARE Act is up for reauthorization, and the government still struggles with how to stop pork-barrel abuses of its funding.
Later that afternoon, the two men headed for the awards dinner at the Wilshire Grand Hotel downtown. Alianza is the Latino caucus of L.A.’s HIV Health Services Planning Council. As such, Alianza dedicates itself to HIV/AIDS work in Los Angeles County’s Latino community. The award was given in association with Bienestar, a community-based organization also serving Latinos.
It was fitting for the once-shy warrior to be recognized there, since L.A. County itself had been shaken by AIDS-funding scandals, and felt the distant effects of José’s activism.
Wayne Turner on the AIDS Institute scandal: http://findarticles.com/p/articles/mi_m1316/is_4_33/ai_73828216/
Colón’s testimony before House of Representatives in 2000: http://us.geocities.com/aidsanepolicies/testi.html
Pacientes de SIDA Pro Politica Sana:
About Alianza: http://clnet.ucla.edu/research/aids/conf/profile.htm
About Bienestar: www.bienestar.org/History.asp
To contact photographer Sean Black, e-mail him at [email protected]
Patricia Nell Warren also writes for the Huffington Post, the Bilerico Project and Outsports.com. She lives in Los Angeles.
Copyright © 2012 (2009) by Patricia Nell Warren. All rights reserved