HIV REPORTING: CDC Recommends Names-Based Programs
The Centers for Disease Control and Prevention today proposed guidelines asking states to implement HIV tracking systems and specifically recommending that states adopt names-based reporting." The San Francisco Chronicle reports that the guidelines, published in today's Federal Register, "mark the first time that federal officials have formally asked states to consider names-based reporting. The agency made the recommendation over the opposition of AIDS advocacy groups, because CDC officials "believe they can better track HIV if names are used," and that the experience of the 29 states that already do so bears them out. The CDC "believe a names-based system gives them a better idea, for example, of which ethnic communities are undergoing the most rapid spread of HIV." CDC officials also insisted that "states must meet specific requirements established by the agency, including strict safeguards to ensure confidentiality."
Providing A Carrot
As an incentive, the "CDC will provide federal funds to states designing systems that meet [certain] performance criteria" (Curiel, San Francisco Chronicle, 12/10). Those criteria include strict privacy standards such as "eliminating paper records, using computer encryption techniques, limiting access to the lists and requiring penalties for violators." The AP/Nando Times reports that whether states choose a names-based reporting program or one based on a unique identifier code, the CDC guidelines include making anonymous HIV testing available. Anonymous testing is currently not available in "Alabama, Idaho, Iowa, Mississippi, Nevada, North Carolina, North Dakota, South Carolina, South Dakota, Tennessee and Wyoming" (AP/Nando Times, 12/10). The Los Angeles Times reports that the proposed guidelines "will be open for public comment for 30 days before final guidelines are issued." Currently, all states track AIDS data by name and 32 states track HIV infections by name, "including three that report only pediatric infections by name" (Cimons/Marquis, Los Angeles Times, 12/10).
HIV/AIDS activists expressed "great concern" that names-based reporting programs would cause fewer people to be tested for HIV out of fears for their privacy. "It's a terrible idea," said Larry Brinkin of the San Francisco Human Rights Commission, adding, "It's very, very difficult in many, many cases to get people with HIV to come in for testing, to find out if they're infected, because of fears of discrimination. If you're going to attach names, then that effort will be severely curtailed." Fred Dillon, state policy director with the San Francisco AIDS Foundation, said, "We're pleased that, at a minimum, the guidelines allow for flexibility and allow the states to decide what the best system is, but we're quite disappointed that there's an advisement that names be used. We feel that the far better system is a non-names-based system that will give us the data we need without deterring individuals from HIV testing and treatment" (San Francisco Chronicle, 12/10). The SFAF called for the guidelines to be revised to eliminate the recommendation for names-based reporting before they become final in 30 days (SFAF release, 12/10). Derek Link of the Gay Men's Health Crisis said, "The reality is we don't have a cure and we don't have a vaccine. So the concerns about privacy and HIV are serious concerns. There's still stigma against people and it's a very real issue." AIDS Action Executive Director Daniel Zingale said, "It's like the Titanic all over again. You're collecting the names of the passengers without providing the lifeboats" (Associated Press, 12/10).