December 21, 2007
NOT A PRETTY SITE
doesn't offer much hope
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What must be done for HRSA to take action? |
Greg Stokes spent years working as an executive assistant to the late Sen. Tom Eagleton and current Senate minority leader Harry Reid, so when he retired to Puerto Rico, he thought he was done with politics. But Stokes joined the AIDS Taskforce for the San Juan eligible metropolitan area. And then he met a fellow North American named Joe*, who, Stokes says, died in November after a month of being repeatedly refused AIDS medication from hospitals and clinics in San Juan.
"There are so many people who have died because they didn't have medicine, but people here are scared to come forward," Stokes said. "Well, here's a person right here who died because of lack of access. It's just a horrible, horrible situation."
Joe, 36, moved from Iowa to Puerto Rico to fulfill a lifelong dream of living on the island, but he didn't come prepared: He had no documentation of his HIV status and only two bottles of medication from the Los Angeles ADAP. Even after Joe had a Western blot test confirming he was HIV-positive, Stokes says no hospital or clinic would provide medication without another test backing up the Western blot. While Joe waited for the results of that second test his health deteriorated rapidly. He developed dengue fever, diarrhea and had difficulty walking. According to Stokes, even when Joe's CD4 count was hovering around 100 and even when he was on a ventilator, Joe never received medication to fight his HIV.
Two weeks ago, Stokes spoke up about Joe. He shared the story about his friend with Sheila McCarthy acting project officer for San Juan Puerto Rico Title I funds, and Ledia Martinez, project officer for Puerto Rico Title II funds. McCarthy and Martinez were in Puerto Rico to carry out the Human Resources and Services Administration's (HRSA) "comprehensive visit" of the Commonwealth. For months activists in Puerto Rico and the U.S. have been pressuring HRSA to take control of federal funding for AIDS services in Puerto Rico because mismanagement and fraud have led to a crippling of its AIDS infrastructure. Puerto Rico receives more than $53 million in Ryan White Care Act funds but activists on the ground have documented dozens of case of people unable to access medication. Meanwhile, the island continues to offer no prevention programs for IV drug users, who account for a majority of new infections. More than 30,000 people in Puerto Rico have HIV/AIDS, and more than 19,000 Puerto Ricans have died from AIDS.
However, McCarthy and Martinez were in Puerto Rico merely as part of a HRSA visit that was not prompted by recent phone zaps and demonstrations in New York and Washington, D.C. insisting that an independent entity oversee Puerto Rico's AIDS funds distribution. Stokes says the duo told him that they "couldn't really answer his question," and that others who asked similarly challenging questions also got no response.
"They don't acknowledge there's an emergency here, just like the state health department of city doesn't acknowledge the problem," Stokes said. "We're short doses of medication, there is rampant corruption and political cronyism. These are chronic problems that have been around a while." The Update's request for information about the site visit from HRSA yielded only a brief statement summarizing skeletal facts about the visit.
The last comprehensive HRSA evaluation of Puerto Rico took place in December 2003 and the last comprehensive visit for San Juan took place in June 2006. HRSA plans to compare the findings of December's trip with the 2003 assessment. That comparison, which will be written by two consultants who accompanied McCarthy and Martinez on the visit, will take place over the next two months, but will not be available to the public.
As the roadblock to the distribution of federal HIV/AIDS dollars in Puerto Rico shows no signs of coming down, HRSA has still not taken any steps to appoint a third-party intermediary or any of the steps the Health and Human Services secretary is allowed to legally enforce that Ryan White CARE Act dollars are spent appropriately. And there are also shake-ups in HRSA personnel, such as the shifting of McCarthy to HRSA policy director. A HRSA spokesperson wouldn't comment on personnel changes.
Continuing crisis
There is more bad news to come in Puerto Rico. According to National Minority AIDS Council assistant director of Government Relations and Public Policy James Albino, a pending Office of the Inspector General (OIG) report will demonstrate that Puerto Rico's ADAP program will have to return an additional $28 million to the federal government, because it was not distributing medication appropriately. While there has been no official confirmation, insiders say people may have been receiving medication who shouldn't have due to fraud—but instead of figuring out the source of the fraud, people were summarily cut from ADAPs overburdened rolls.
One insider who asked to remain anonymous because he works for the health department and fears retribution says he received a letter from ADAP that he would no longer be eligible for ADAP that month would have to pay $1,000 to $2,000 in copays, which he said he can't afford.
"The health department is punishing people that have been adhering to meds," said Anselmo Fonseca, an HIV-positive Puerto Rican and long-time activist. "They are taking away people's only source of security and punishing them because the system is going wrong. It's homicidal. If I had my way, I'd shackle these people up."
The OIG would not comment on the upcoming report, because the Puerto Rico Health Department has yet to produce its rebuttal. The 2005 report of the Puerto Rico Health Department from 2001 to 2002 recommended the Puerto Rico Health Department refund to HRSA $1,567,993 for unallowable costs, $1,117,831 for medications that were not purchased at the lowest price available and make numerous accounting and other reforms. The Puerto Rican Health Department's rebuttal disputed many of OIG's claims.
*"Joe" is a pseudonym to protect the privacy his family requested of Stokes.