December 28, 2005

Feds Ask Questions, HIV Preventionistas Squirm

The advocacy group Community HIV/AIDS Mobilization Project (CHAMP) is sounding an alarm about a new federal monitoring system that they say may frighten away clients of HIV prevention programs with invasive questions and unconvincing promises of privacy. “The intrusive data collection goes against good prevention,” says Sean Barry, CHAMP director of prevention policy, “which focuses on risk reduction and open and trusting relationships with clients.”

Starting next week, HIV prevention programs hoping to stay on the federal gravy train will have to comply with the Centers for Disease Control’s (CDC) Program Evaluation and Monitoring System (PEMS), which includes requirements that HIV positive clients answer questions about their sexual activity and drug use. Robert Janssen, MD, director of the CDC’s division of HIV/AIDS prevention, told POZ, “These questions should be part of the prevention services already provided.” But Barry says, “While that information might come out in effective counseling, counselors shouldn’t be required to force it out if they haven’t established that rapport. It might push clients outside the system of care.”

The New York-based CHAMP, which offers training for HIV counselors and activists among its other services, is also concerned that such data might feed charges of criminal transmission—most states can send you to jail now for failing to disclose your HIV status to a sex partner. While the programs affected by PEMS will encrypt the information they collect in order to protect clients’ identities, CHAMP is not satisfied with the vagueness of government statements about guaranteeing confidentiality in the long term.

“We have the highest standards about security and privacy of our encrypted data,” insists Janssen, who says the CDC consulted both the American Civil Liberties Union and Lambda Legal while developing them. But CHAMP’s Barry sees potential for abuse without clearer rules than he’s seen so far—not to mention efforts to “expand community trust.”

Making matters worse, says CHAMP, the Bush administration’s favored “abstinence-only” programs are not subject to PEMS at all—and yet continue to receive more federal money than other prevention projects. Instead of using PEMS, the government measures abstinence groups’ success by tracking attendance.

The big picture for CHAMP, as laid out in a report released earlier this month: “PEMS threatens to come up with completely unreliable results that tip the balance in favor of abstinence promotion.” The group would instead support narrower, more scientific research to evaluate prevention programs in just a sampling of organizations.