National AIDS and HIV groups are expressing a growing concern about plans by the Center for Disease Control (CDC) to establish a new set of data collection requirements for federally funded HIV prevention efforts.
The data collection program, called the Program Evaluation and Monitoring System (PEMS), will mandate the reporting of highly personal information about every person who participates in federally funded HIV prevention programs.
“Collecting data for PEMS will mean less time for HIV prevention counseling, could put people with HIV at risk for criminal prosecution, and won’t actually tell us whether HIV prevention programs work,” argues Julie Davids, Executive Director of Community HIV/AIDs Mobilization Project (CHAMPS).
In December 2005, 34 organizations from 15 states sent a letter to Rob Janssen, the Director of the CDC’s Division of HIV/AIDS Prevention, requesting a meeting to discuss the PEMS program. According to organizational representatives, the program interferes with the actual prevention education by diverting attention to answering a time-consuming list of invasive questions, strains already overburdened entities, and may put people with HIV at risk for criminal prosecution by collecting information about HIV status and sexual or drug behavior over a period of time. Representatives from CHAMPS are currently waiting to hear back from the CDC on this matter.