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.