January 6, 2006

Feds force HIV groups to ask prying questions

by Eric Resnick

Atlanta--New federal rules will force HIV-prevention programs to ask people prying questions and send the answers to the government, according to critics of the new requirements.

The Program Evaluation and Monitoring System is being phased in by the federal Centers for Disease Control. Its new rules began extending to HIV prevention programs on January 1, and some Ohio agencies must begin asking the questions this month.

�It�s nationalized data collection on a scale not done before,� said Sean Barry, director of prevention policy of the Community HIV/AIDS Mobilization Project, or CHAMP, a national AIDS activist organization in New York City.

The new rules require that participants in federally funded HIV prevention programs be asked a series of questions, and that the responses be entered over the internet.

The CDC did not provide any spokesperson with expertise in the rules� details for this report. Spokesperson Jennifer Ruth, however, pointed out that CDC is providing the software and training to agencies for free.

CDC documents online tout the new rules as necessary to measure the effectiveness of prevention programs.

Bill Hardy, who directs the AIDS Resource Center in Dayton, said he is not opposed to collecting data and measuring outcomes, �but in a political culture of funding, we�re at risk of using data to promote a philosophical bias.�

The new questions are probing and personal, including where you met your last sex partner and if you knew their name.

The questions probe the demographics of sex partners and ask detailed information about sexual histories and drug and alcohol use.

They are intended to let the government know who is seeking prevention services and what their risk factors are.

For prevention targeted at people who are already HIV-positive, the questions include when the person became aware of their status and identifying information for their partners since then. In states like Ohio with notification laws, this could put people with AIDS at risk of criminal prosecution.

Michael Gipson of the Cleveland AIDS Taskforce, whose programs will be the first in Ohio to begin the new rules on January 13, said they are currently asking some of the required questions as part of pre- and post-HIV test counseling.

�But it�s our own internal stuff now,� said Gipson. �Now we�re going to have to report it to the government.�

Agencies that do prevention work currently report only basic demographics like age, gender and race of those who use their programs.

�PEMS resembles behavioral research more than simple monitoring,� said Barry, �and as such should be governed by the legal protections of research such as informed consent and Institutional Review Board approval.�

Barry said people giving information may not know that it is going directly to the CDC.

CHAMP�s director Julie Davids is also dismayed that science-based prevention programs are required to do PEMS reporting, while �abstinence-only� ones are not.

�PEMS prioritizes invasive data collection above the actual work of HIV prevention itself, threatening to turn educators into interrogators and overwhelm already under staffed agencies,� said Davids. �Barely-monitored abstinence only programs get funding increases despite no evidence that they prevent HIV, and much documentation that they spread disinformation.�

Davids also called PEMS an unfunded federal mandate. According to information published by the CDC in the Federal Register, agencies should expect to pay for at least 67 additional work hours each quarter to do PEMS reporting, and health departments should add 99.

Additionally, according to Barry, the computer requirements may be more than small agencies have, and there is no funding to cover the cost of either the hours or the technology.

�This program is not going to give us the answers we need,� said Barry. �PEMS will give us neither good monitoring nor good information on outcomes.�

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