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. Under the U.S. Constitution, Puerto Ricans get only limited protection, though Supreme Court decisions can apply to them. But they have little representation in Congress, and can't vote in federal elections. Hence a festering situation that provoked some Puerto Ricans to organize a nationalist movement advocating independence from the U.S. As a result, the FBI established a strong presence in Puerto Rico, leading to a 2005 gun battle in which a nationalist leader was killed.
While the United States wanted Puerto Rico for reasons of Caribbean military strategy, our government evidently found it inconvenient to deal with Puerto Rican social problems -- even though many Puerto Ricans live well below the official poverty line set by mainland standards. As a result of federal inattention, the Commonwealth's health system has decayed even more disastrously than healthcare on the mainland. Most American politicians act like they don't know or care what happens in Puerto Rico.
Says Guillermo Chacon, vice president of New York's Latino Commission on AIDS, "One of the most difficult things is getting the mainland to recognize Puerto Rico as being part of the country."
So it's questionable whether Puerto Ricans will benefit at all from the Obama administrations's efforts to reform healthcare.
Enter José Fernando Colón. He was born in San Juan in 1952. By the time he graduated from the University of Puerto Rico, José was quietly out to family and closest friends. In 1982 he went to Spain with his partner Eduardo Aramis for graduate studies in literature. While there, he published his first book of poetry, and it looked like he would spend his life quietly in Hispanic literature.
But life turned things in a different direction. Aramis became ill with what turned out to be AIDS. José had learned that he, too, was HIV+. He 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.
No Room at the Hospital
The Ryan White CARE Act had just been created in 1990, making $220 million available through growing hundreds of organizations and agencies. The Act was intended to benefit PWAS and their families who were uninsured, under-insured or low-income. Puerto Rico's rate of HIV infection was already on record, so the new legislation applied there as well. Unfortunately, as the feds often do with aid to foreign governments, they started disgorging multimillions of dollars in AIDS aid into 50 states and U.S. territories without demanding any accountability or oversight on how the funds were spent.
What Congress had done was write a blank check for fraud...and for crimes against poor people with HIV/AIDS.
When Eduardo developed a lung infection and Kaposi's sarcoma, and went to the San Juan AIDS Institute for help, he was denied treatment. Yet AIDS drugs were available in Puerto Rico and he qualified as "low income." 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.
For the next two years, José went into a deep depression. Then one day in 1995, he met Anselmo Fonseca. Anselmo too was HIV+ and had lost a partner to AIDS. Shortly they became a devoted couple. When José developed pneumocystis pneumonia and the cocktail treatments were first made available, the two men battled the uncaring system and managed to get treatment together.
José was now 43, and Anselmo 37. The two built a good business teaching private English classes -- they had clients all over the city. But by 1999 their outrage was growing as they learned of other Puerto Rican PWAs dying because treatment was "unavailable." A few officials with a conscience joined them, and a complaint reached the San Juan office of the FBI. Since the FBI is charged by Congress with investigating crimes of fraud in the federal healthcare system, the bureau had to respond.
Offshore Banking With AIDS Money
In March 1999, José and Anselmo learned the first shocking details that FBI investigation had turned up.
At that time, Ryan White funding for Puerto Rico totalled $75 million a year. The FBI learned that some of these monies had been embezzled for personal use by assorted politicians, lawyers and administrative medical personnel. At the San Juan AIDS Institute, $2.2 million dollars had been siphoned away into offshore bank accounts, where they paid for all kinds of personal luxuries -- from jet skis to a maid for Dr. Garib.
The question had to be asked: How many Puerto Ricans were dying because their treatment money had been embezzled?
José and Anselmo were so outraged that they immediately founded a community-based organization called Pacientes de SIDA Pro Política Sana -- AIDS Patients for Sane Policies. Its mission: fight for justice, and for equal access to care by Puerto Rican PWAs. But in sharp contrast to so many giant AIDS orgs that float on massive funding streams, this little NGO would take no federal money, no pharmaceutical grants, no large gifts from donors. According to the two men, PSPS was funded by their personal savings and business earnings. Since nobody pulled their strings, they were free to call a spade a spade.
Organizing done, José and Anselmo faxed the first PSPS 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, where Catholic-Church-dominated society was largely homophobic towards gays and tended to view AIDS as the result of "immorality and sin."
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 slumped in the dock as a prisoner. He testified about what the doctor had done to his partner. Sad to say, the FBI's courtroom position was that the federal government was the sole victim of these frauds.
In 2000, with Anselmo, José traveled to Washington D.C. to testify before the House of Representatives. Only around a dozen Congresspersons bothered to show up and listen to these woes of far-off Puerto Rico. As they sat scattered in a sea of empty seats, the once-quiet literature professor boldly barked at them that the U.S. government ought to amend the Ryan White Act to demand full accountability on spending.
"You have to help us with these thieves!" he told them.
Back in San Juan, 14 individuals, including Dr. Garib, were finally convicted of felonies and sent 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.
The mainland's major media barely mentioned this landmark courtroom drama. But the San Juan AIDS Institute case was only the first of many battles to come.
Housing Vouchers for Sale
By 2005, with the economy sliding, federal budget cuts were reducing Puerto Rico's Ryan White share to $58 million. José and Anselmo found that local AIDS programs still tended to drag their feet on getting care to Puerto Ricans with HIV/AIDS.
A major issue was the $15 million a year that the city of San Juan received through Ryan White. By now, the local media had learned to interview PSPS. The little NGO's position was this: "It seems that the municipality lacks the in-house expertise to carry out important and time-sensitive tasks in order to provide highest quality of services and treatment to guarantee adherence to life-saving medications... The current millions of life-saving dollars destined for this segment of our population are not adequately being administrated."
PSPS established itself as a watchdog, denouncing the misuse of funding, including patients not receiving their prescribed medications, and doctors not getting paid for as long as five months, as well as problems with housing vouchers.
José told reporters: "These housing vouchers were being sold to people who were not sick."
The head of San Juan's Section 8 Program was indicted for soliciting bribes from people who wanted to be moved up on the waiting list for services.
But by late 2006, as problems worsened, 21 AIDS clinics in San Juan -- all of them administered by the city government -- insisted that they had stopped receiving Ryan White reimbursements. This created a deadly domino effect -- San Juan, in its turn, was not forwarding funds that were supposed to go to 29 other cities and towns in Puerto Rico.
Return of the Feds
One evening in December 2006, 84 agents swooped down on four San Juan AIDS Program offices. Far into the night, they seized computers and thousands of documents, and interviewed office workers about possible misuse of Ryan White funds in the San Juan municipality. This operation was bigger than the first one. The San Juan Star reported, "Agents from the Federal Bureau of Investigations, the U.S. Internal Revenue Service, the Puerto Rico Police and the U.S. Health and Human Services Office of the Inspector General participated in the raids."
Unfortunately, with so much AIDS paperwork now in FBI custody, services to many sick people were disrupted. By March 2007, GMA News TV was reporting:
"The U.S. has halted payments to clinics that treat AIDS patients in Puerto Rico, forcing hundreds of poor people to go without free medicine in a U.S. territory with an AIDS rate nearly double that of the mainland. Puerto Rican officials blame the FBI, saying agents investigating fraud seized documents clinics need to get reimbursement for drugs and services. The FBI denies it is responsible. Patient advocates blame the San Juan city government."
In the capital, some 2000 PWAs were receiving only enough meds to last 5-7 days per month. "People's lives are in danger," Anselmo Fonseca told the press.
Meanwhile, on another front, Jose and Anselmo were battling officials over the dwindling ability of unable-to-work or about-to-be-homeless PWAS to get housing through HOPWA (Housing Opportunities for People With AIDS). The local situation mirrored similar problems that were developing with HOPWA on the mainland -- ongoing budget cutbacks meant that more and more sick people on the HOPWA waiting lists went without a roof over their heads.
In response to a complaint from PSPS, the PR Secretary of Health Lorenzo Gonzalez Feliciano retreated into lofty sarcasm when he replied to José: "We are very sorry to hear that our efforts to facilitate housing to our HOPWA Program participants do not meet your expectancies."
Incredibly -- as I write this in 2009, three years later -- the 2006 FBI investigation is still grinding forward, as the agency continues to scrutinize piles of documents.
Catholic Church Leverage
All this is happening in a commonwealth where there is essentially no separation of church and state. The Catholic Church is allowed to do the kind of open lobbying that it wouldn't dare to do on the mainland. Despite inroads made by Protestant evangelizing, around 80 percent of Puerto Ricans still identify as Roman Catholic. On the AIDS front, the Church continues to propagandize Puerto Ricans on avoiding condoms and embracing abstinence-only instead.
On a parallel track, PR's growing community of out LGBT people has been working to legalize same-sex marriage or civil unions in the commonwealth, but the Church blocks them at every turn. In 2007, the Church did propose a compromise concept called "shared residence." This was the brainchild of San Juan archbishop Roberto González, who worked with legislators to introduce the bill himself. The Church was willing to allow the extension of hospital visitation rights, inheritance rights and medical-insurance rights to any two persons living together under the same roof, whether they were straight or gay. But the Church made sure that "shared residence" language did not recognize same-sex couples as a family unit or offer them the same protections and rights that marriage does.
Said Puerto Rican senator Jorge de Castro Font, who backed the bill: "Puerto Rico is a Christian town." (The shared-residence bill didn't pass.)
Given this dominance of the Church, it's all the more extraordinary that openly gay José and Anselmo have managed to make themselves so visible in Puerto Rican politics. In 2008, for the first time ever, Governor Acevedo Vilá invited three LGBT Puerto Rican leaders to take part in a traditional annual ceremony, the saludo protocolar, at the governor's official residence. Representing PSPS, José was one of the three distinguished invitees, along with Bilerico's own Pedro Julio Serrano, president of Puerto Rico Para Todos, and Rev. Margarita Sánchez, president of PR's chapter of Amnesty International.
Most amazing of all, the San Juan archdiocese allows PSPS to help organize the massive candlelight AIDS vigil every year. The sanctuary of the stately baroque cathedral, built in 1521 and second-oldest in the western hemisphere, is always packed with people for the event, as thousands more stand outside with their flickering candles. José has actually stood at the pulpit, where a priest ordinarily stands, and made a public pledge to keep on fighting for PWAs for the rest of his life. The scene is emblematic of LGBT Catholics who continue to fight valiantly for acceptance within the Church.
Indeed, despite so much ecclesiastical opposition to what PSPS is doing, Colón credits his deep Catholic faith for giving him strength to go on fighting.
Scandals on the Mainland
Today Pacientes de SIDA Pro Política Sana is still almost unique among AIDS organizations -- PWA-founded, community-based and volunteer-operated. It counsels thousands of clients about their civil rights where treatment and service referrals are concerned.
Thanks to the efforts of PSPS and its allies, some Democratic and Republican Congressmembers -- along with a few officials like Attorney General Janet Reno -- finally sniffed the wind and realized that AIDS spending didn't always pass the smell test. In 1999, legislators asked the General Accounting Office for an audit of federal AIDS programs and services, including those in the U.S. In 2000, the Ryan White CARE Act was reauthorized by Congress. And the testimonies of José and other whistleblowers were finally sinking in. That same year, Congress added amendments to the CARE Act to increase accountability, and to enhance service in urban and rural communities.
These changes proved what two people can do, even when confronting a government colossus.
But getting compliance may be hard with so many Americans denying that there's a problem.
Some in the U.S. media like to pontificate that Puerto Rico's problems are just an "isolated instance," that the commonwealth has "traditional" problems with political corruption. But the undeniable fact is -- these Puerto Rican scandals are actually a reflection of the larger scandals and criminality that have encrusted itself around healthcare on the mainland. In the area of fraud alone, states abound with examples of federal AIDS funds being embezzled, misspent, not spent at all -- or funds simply soaked up by outrageously high overhead and directors with outrageously high salaries.
Two glaring mainland cases got only modest news notice here. In the early 2000s, right in Los Angeles County where I live, local activists learned that $17 million earmarked for HOPWA housing had sat in a bank account unspent. Yet this inaction affected two thirds of L.A.'s PWAs. Meanwhile, in New York, a state Supreme Court Judge found the Giuliani administration in contempt of court for failing to place homeless PWAs in housing, even though funds were available.
We have to ask ourselves what impact these sordid and unfeeling practices continue to have on the actual AIDS death rates -- as when a sick person who can't get decent housing finally dies on the street somewhere because of combined illness, stress and exposure.
Some LGBT members of the AIDS establishment were not happy about news attention to these crimes. ACT UP DC's Wayne Turner published a number of investigative pieces. In a Washington Monthly piece, Turner commented drily, "AIDS groups who have taken great pains to stake out a benevolent image still refuse to acknowledge that the number of 'isolated incidents' of fraud, mismanagement, and abuse of AIDS funds are increasing nationwide."
When I detailed some of these crimes in a 2002 column for A & U, a few readers wrote the magazine to protest. One San Francisco gentleman who had made large donations to AIDS nonprofits emailed me angrily to insist that I was making it all up. Responding in my next column "Dollars and Deaths," I pointed out that the cases I cited -- far from being fictitious -- had already gone through the courts.
How could this be happening, when AIDS is supposedly such a humanitarian issue? When "winning the war on AIDS" is supposedly such a national goal? And why so little outcry from PWAs on the mainland? Sad to say, I learned that many U.S. PWAs see the abuses very clearly, but they keep quiet because poz whistleblowers are often targeted for what one of them calls "consumer disenfranchisement." This particular man, who lives in a Southern state, told me that he was punished for his allegations of local funding fraud by being denied services at his local ASO. Similar cases of punitive service denial, or of barring whistleblowers from conferences and meetings, are on record across the country.
José Colón told me: "I was openly threatened because of my activism. If I hadn't been vindicated by the trials, I might have had to leave the island."
The Troubled Present
This year, as the Ryan White Act once again faces reauthorization by Congress, and the Obama administration flounders around trying to reform healthcare, it's clear that the United States of America still has a long way to go if it is really going to clean up its act in this important area.
Some mainland recognition has come to PSPS -- but mainly from Latinos. In September 2009, the two men traveled to Los Angeles, where José was named a "Community Hero" in an annual ceremony co-organized by Alianza and Bienestar, two organizations that serve the Latino community in Los Angeles County. More recently the Puerto Rican Chapter of the National Association of Social Workers designated José as "Citizen of 2009."
Meanwhile, José is returning to writing -- sitting down to write a book about the PSPS story. And he has an incredible story to tell. He and Anselmo Fonseca played a major part in the history of the AIDS epidemic, by jarring the U.S. federal government into its first efforts to stop the illegal diversion of AIDS funds -- to ensure that taxpayer money actually gets to the PWAs and their families for whom that funding was intended.
Indeed, the two men's battle was one of the first shots fired in that greater war to reform all healthcare -- one that is likely to last as long, and mire the country as deeply, and divide it as sharply, as the war in Afghanistan.
Photos by Sean Black, courtesy of A & U Magazine.
About Pacientes de SIDA Pro Politica Sana
Warren's A & U column on Puerto Rico's healthcare problems
Wayne Turner on the AIDS Institute scandal
Wayne Turner on Colon's testimony before the House in 2000
Text of José Colon's testimony before House of Representatives in 2000
Warren's 2002 article on AIDS corruption "Dollars and Deaths"
Blabbeando on "shared residence"