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An Overwhelmed D.C. Agency Loses Count of AIDS Cases
Marie Sansone, who runs the surveillance branch of the District's AIDS office, says, "Our department's mission statement reads, 'to provide a comprehensive picture of the HIV/AIDS epidemic.' We're not doing that. Not yet."
(By Marvin Joseph -- The Washington Post)
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Still, AHPP managed to release a few reports, such as one in 2003 based on 2001 data that found the District's AIDS rate the highest among large U.S. cities and that half of the new AIDS cases in Wards 7 and 8 were among women. But AIDS cases are indicative of where the epidemic was, health workers say. HIV cases, they say, serve as the barometer of where the epidemic is now.
Little has come out of AHPP since.
All the while, dozens of organizations serving various populations across the city depend on the department's surveillance data to plan and manage their programs. Two federally mandated bodies -- the HIV Prevention Community Planning Group and the Ryan White Planning Council -- charged with prioritizing and allocating more than $60 million in federal funds, are given drafts and estimates rather than actual figures.
And without reliable data, questions arise. How high are HIV rates for Latino immigrants who flock to La Clínica del Pueblo in Columbia Heights? How much money should go to the Women's Collective? Should more funds go to PreventionWorks!, which distributes clean syringes to drug users?
"The fact is, we don't have a data-driven process and we can't really say that the funding is following the epidemic," says Catalina Sol, HIV/AIDS director at La Clínica and a member of both of the HIV Prevention and Ryan White groups. "When you don't have data that people can trust, when you don't have data that is accurate, you're making people invisible."
Sansone agrees.
"Our department's mission statement reads, 'to provide a comprehensive picture of the HIV/AIDS epidemic,' " she says. "We're not doing that. Not yet."
* * *
When a D.C. resident tests positive for HIV or AIDS, a lab report goes to Sansone's office, to be followed by a city-mandated confidential case report written by a private physician, health care provider or local clinic. It's an extensive report, asking for the resident's demographic information, medical history and treatment options -- Medicaid, HMO or private insurance.
But that doesn't mean all the cases get to AHPP.
There's passive reporting and active reporting. The former means that health providers such as the Whitman-Walker Clinic report their cases to AHPP; the latter means that AHPP's field investigators must go out to the community to get the case reports. Like Baltimore, whose epidemic mirrors the District's, the city relies heavily on active reporting. But unlike Baltimore's office, which has a team of six field investigators and a field supervisor, Washington's has three field investigators and no field supervisor.
There have been problems with both methods. Some cite miscommunication. Whitman-Walker, the largest provider of HIV/AIDS services in the city, didn't report its cases for almost two years. "The city stopped sending [field] investigators two years ago. At that point we didn't know what was expected of us," says Kim Mills, a Whitman-Walker spokeswoman. The clinic resumed its reporting last August.
