January 13, 2006
PreventionWatch:
POISONED PEMS
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DAVIDS: won't put up with PEMS |
[Editor's Note: As part of a major HW/C2EA effort in 2006 to pressure the federal government to support science-based HIV/AIDS prevention efforts over bogus, misleading and publicly funded abstinence-only programs, we introduce this occasional new feature.]
Thanks in large part to the aggressive advocacy of the 3-year-old Community HIV/AIDS Mobilization Project—founded by ACT UP Philly vet and C2EA organizer Julie Davids—you might have read recently about the CDC's new computerized national databse called PEMS (Program Evaluation and Monitoring System). Starting January 1, all programs receiving CDC funding to do HIV/AIDS prevention must enter into PEMS reams of data—all the better to evaluate the success of such programs, says the CDC.
The sticking point? The program also requires programs to collect from clients an array of incredibly personal information—just look at this sample Q&A for case managers obtained by CHAMP—including HIV status, whether (and with how many people) clients have had sex recently, what drugs clients have used and whether they've had sex for money. The program requires only that clients be identified by a coded number—and the CDC has said that the program employs cutting-edge confidentiality technology—but, according to Davids, it is unclear whether the CDC or other government agencies would have the right to demand the identity of certain clients.
That's just the start of prevention advocates' worries about PEMS. Having to collect so much sensitive information from every client cuts deeply into ovestretched prevention programs' already scarce time and resources, virtually becoming an intervention in and of itself. Prevention workers will have to ask nervous new clients a barrage of intrusive questions right from the first visit—enough to scare many clients away!
Plus, PEMS is not required for abstinence-only prevention programs, on which the government spends an entirely separate moneypot totaling millions of dollars. And many advocates believe the CDC could better evaluate fed-funded prevention by carefully examining a sampling of such groups nationwide rather than trying to assess them all based on data given by prevention workers and their clients under a federal mandate .
CHAMP has already drawn attention to PEMS in the latest issue of its monthly HHS Watch, in this gay.com op-ed and in these stories on 365gay.com, a gay Ohio paper and poz.com. Next steps? "We're going to call a meeting with CDC to demand that they suspend implementation of PEMS until it's fixed or dismantled," says Davids—adding that advocates will also urge prevention groups that receive CDC money through their state health department to call those departments and dissuade them from taking part in the PEMS program until such issues have been addressed.
The Campaign to End AIDS will also issue an action alert on PEMS next week—so keep your eyes peeled.