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by Nicole Joseph
Many of the estimated 11,000 people living with AIDS in the U.S. commonwealth of Puerto Rico have been abandoned and left for dead. The local and federal officials entrusted with protecting their health have been accused of mismanaging AIDS funding, which leaves positive Puerto Ricans in a lethal limbo between American and Puerto Rican aid—and feeling utterly lost on their own island.
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.
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comments 1 - 14 (of 14 total)
Gabe Gaslin, crystal, mn, usa, 2010-01-26 14:35:34
my pstner and I are from MN USA and wonder if there were benefits other than weather, for hiv poz, could we keep our benefits from USA while
living in Puerot Rico
Alfredo, Baltimore, 2008-09-30 17:13:26
I remember seeing Puerto Rican POZ advocates at USCA 2007 in CA. They were not a happy group, but how could they be? They were all aware of how the political corruption in P.R. has negatively impacted men & women living with HIV/AIDS.
In order for PLWHAs to receive health and support services, Federal funding must be better regulated to assure this happens.
Saludos y abrazos to my brothers and sister in P.R.
Que Dios los bendigan.
JR, NY, 2008-09-11 19:10:53
The theft of funds slated to treat AIDS in P.R. has been a travesty. I take my hat off to all the advocates in the island for their laborious commitment to inform the public there, as well as in the mainland. I am a 20 year survivor in the mainland, and even here HIV/AIDS is looked upon like leprosy. Please, continue to educate our Puerto Rican people, and help our brothers and sisters overcome their obstacles. Un fuerte abrazo, mis hermanos.
Hugo, Los Angeles, 2008-09-11 14:07:04
I am Puerto Rican. I left there in 1973 as a 2nd Lt. in the AF and never moved back. I have been poz since 1984. I have survived (not taking meds since fall of 2005), by following my own instinct, and not believing in superstition or relying on magical thinking. I am appalled at the ignorance, and cruelty described in the article. My parents who lived in PR tell me that the politicians in PR are all crooked. Homophobia is so prevalent. I am saddened.
Emmanuel, New York, 2008-09-08 12:38:59
Thats why i moved to New York with the purpose to find an cheaper alternative to positive people like me... Now I am a licensed acupuncturist and all what i have learned i am putting in practice with myself....Since 2001 I being fighting and I am med free and doing great...I would love to help but I am tight handed.
Jose Mariani Rosa, Minneapolis, 2008-09-02 16:33:15
As a Puerto Rican and a Medical Case Manager working with person afflected with HIV/AIDS I find this story most disturbing but know it has been true for so many years. More needs to be done to reach out and mobilize our communities our people our land. I hope that more will take an active rule in for Latino AIDS awareness during October. Rather then just talking about it get and pointing the finger. We can do so much more rather then depending on our government to do it for us.
Richard, San Antonio,PR, 2008-08-31 23:28:16
It is also true that the ADAP program does not work in Mayaguez, PR. Even the poverty level chart they use is to their own convenience and does not follow the same income rate levels than the ones in states like Florida, NY, or California. Here they kick you out just for having any private insurance from your job and not by analyzing your income versus the high deductable amount you have to pay for the medications which go over $225 a month. This leaves us even without extra $ for groceries!
Luz Angelica Aponte de Merchant, Sharon, PA, 2008-08-31 14:18:26
He sido manejadora de caso para personas con VIH desde el 1996. Me apena much la situacion de mis compueblanos viviendo con el virus. Si el Dept de Salud no puede manejar estos fondos, o asegurarse que se utilizen apropiadamente, entonces lo logico es que los CBO's reciban el dinero directamente. No podemos obtener diferentse resultados si siempre hacemos lo mismo(ello es la definicion de locura).
Ricanguy, San Antonio,TX, 2008-08-22 10:30:47
As a puertorican, I am heart broken to hear the situation about HIV/Aids that the Island is having. Unfortunately, in my opinion the situation is all political, and don't think this will change unless PR new generation (The Youth) becomes more progressive and see that United States is our only hope to be treated as equals. After all, puertoricans are considered US citizens. Private funds (Thank God for them!) are not enough to resolve and/or stablelized this situation, Gob bless them.
Sky, New York, 2008-08-21 18:12:23
Puerto Rico has more than an HIV/AIDS problem and that is dirty politics. That island attracts major tourist from around the world. They should be self sufficient in taken care of their own people's needs. Out of any of the islands you would think that Puerto Rico would be a prime example of having an excellent health care system. I say boycott the Island until they clean up their act. Let everyone feel the pressure until they wise up, I bet that would stop the corruption fast.
machito65, Miami Beach, 2008-08-21 14:52:44
Its sad being Puerto Rican and living in the mainland and reading about this crisis. It makes me want to move there and take all of my knowledge I acquired working in Preventiona and Care and contribute something positive that would help those who are in need. Yet I know how the politics works there. Complaining and fighting is good and hopefully this article would wake up some people. Until that occurs, organizations that do exist in PR need to focus on fundraising. I will pray for all of you
PRMike, St cloud Fla, 2008-08-21 11:31:16
I would love to be able to go to Puerto Rico but I can not get my SSI there and I am afraid that I would not be able to get my Meds there, I hear that the goverment there really does not care wheather you live or Die if your infected with HIV/Aids so until things get better there I guess I will not be seeing my beautiful Island, It's a shame but I truly beleive that the US should do something about it, thank you sincerly PRMike
Antonio, San Juan, 2008-08-20 20:30:47
The article fails to mention the responsibility of the PR Catholic and Pentecostal churches for this crisis. We have no real sex education or condom distribution by the gov, thanks to the constant threat of Church leaders to direct their flocks to vote against any government that dares to promote those life saving strategies. At present the main strategy of the gov is a hateful TV campaign that depicts HIV positive people as predatory monsters seeking out young people to destroy their lives.
mom living da life, , 2008-08-20 12:36:13
comments 1 - 14 (of 14 total)
im in PR now on vacation my family dat know want me 2 come live here pos since 2007 i told them no cause i wont get da same treatment i get in the US & reading this article confirms that. Its very sad because i would luv to stay in PR with my family i wish like so many of us that we could change the treatment of hiv pos in PR i will show this article 2 my family they really believe i'll get the same treatment here as in the US but unfortunately its not so