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by Nicole Joseph
Fonseca and Colón also pressure Puerto Rican political officials but say that winning commitments is tough. As Puerto Rico waits to elect its new governor this year, Fonseca says he’s received numerous promises about how politicians plan on solving the AIDS crisis—with little follow-through.
Yet another debilitating effect of politics on the Puerto Rican AIDS crisis is the silence of the island’s many activists and heads of community-based organizations (CBOs). They can be reluctant to speak out, fearing they’ll lose their hard-earned gains. “There’s a great deal of fear even among people that were most active,” says Dennis deLeon, president of the Latino Commission on AIDS, based in New York City. “People who haven’t been paid in eight to nine months are afraid of speaking out” for fear of losing even more funding.
Colón says Puerto Ricans are treated as second-class citizens. “We have been suffering [for] years,” he said. “We’re an after-, after-, afterthought for the Bush administration, especially people living with HIV/AIDS. With the economy in the U.S., who’s going to be thinking about AIDS patients? Everyone’s thinking about gas and food and foreclosures. I have no words to describe how frustrated I am.”
Sandy Torres and Jose Mulinelli sit on the edges of the flower-patterned chairs in my hotel room. Torres runs Bill’s Kitchen, an organization that provides support services and meals for people living with HIV. In the past few years, funding problems have forced her to cut her staff substantially. When I ask Torres to name her most difficult moment during the AIDS crisis, she pauses, close to tears. “The day I [had to] stand up in my distribution center and give out letters to people to be placed on waiting lists,” she says, with a hint of anger. “I will never forget that day in my life. I spent almost an hour with my clients, trying to explain why we were at that point. Deep inside, I feel like I’ve failed them.”
Perhaps the largest, most obvious problem facing the AIDS community in Puerto Rico today is that U.S. federal funds allocated to the island for HIV treatment and care often never reach people living with the virus. Whether due to incompetence or intentional misuse of funds, activists say, the funding problems have caused some clinics to cut staff and pull back on services in order to stay afloat. Others have had to shut down. While not as blatant as the San Juan AIDS Institute scandal, today’s mismanagement is just as costly; the closures and staff cuts have meant a reduction of services for thousands of people living with HIV.
Combined, the Puerto Rico Department of Health and the San Juan Municipality have received more than $47 million this year from the federal Ryan White CARE Act, which is administered through the U.S. Department of Health and Human Services’ Health Resources and Services Administration (HRSA). Ryan White funds are separated into four principal parts: Part A goes to cities or eligible metropolitan areas (EMAs), such as the San Juan Municipality; part B goes to states and territories, such as Puerto Rico and Guam; and parts C and D—for early intervention services and care for women, children, infants and older youth—are doled directly to CBOs. An additional Ryan White Program provides funds for “special projects of national significance,” innovative programs promoting care for positive people. Programs that get most of their money from the first two parts must submit invoices to the department of health and the San Juan Municipality for any reimbursement. The wait times for reimbursements have been as long as nine months—too long for poor clinics to survive.
Torres and Mulinelli say that parts A and B of the CARE Act should be administered directly to the community-based groups. In 1989, the U.S. Centers for Disease Control and Prevention (CDC), which had funded Puerto Rico’s CBOs through the island’s department of health, switched to direct funding, handing the funds straight to the CBOs. Though the move was well received by activists on the island, the money is targeted almost exclusively at prevention efforts, not actual care and treatment for people already living with the HIV/AIDS. Now, says Torres, many of her clients are running out of time. “We tried to put the people who weren’t too frail on the waiting lists,” she says, so the sickest patients could access to the services first. However, cutting food services was too much for some of even the healthiest patients; once they got off the waiting list, many became ill and some progressed to AIDS.
Other clinics have been forced to ration medications. Ivette Gonzalez, 40, was diagnosed with HIV in August 1992. She says it’s been hard to get meds from her clinic, San Juan Municipality’s Mas Salud Sida Con Salud, because of constant rationing. “Sometimes I’d have to take four trips to the clinic to get my meds,” she says.
In December 2006, the FBI, the IRS and the Human Services Office of the Inspector General raided several AIDS program offices in the municipality of San Juan to determine what was hampering the reimbursement process. Activists say that these investigations have proved more costly than helpful. The FBI reportedly demanded files and records from some community groups, which some say placed a heavy burden on them because of the cost of printing out hundreds of records.
Such was the case for Rosaura Lopez-Fontanez, who runs a community clinic called Puerto Rico CONCRA, an organization founded in 1990 for people living with HIV/AIDS. The organization has a full clinic with doctors, dental care and mental health care, as well as case management, youth programs and support groups. The organization has suffered many setbacks because of the wait times for reimbursements, and Lopez-Fontanez says that if it weren’t for the parts C and D direct funding that CONCRA receives, it might have closed. “We’ve had to minimize doctors and staff and minimize services to our clientele,” she says. Lopez-Fontanez says that other smaller organizations that don’t get direct funding like CONCRA haven’t been able to remain open.
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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