CDC to Ask States to Track HIV Cases, Not Just AIDS

WASHINGTON — Federal health officials will call upon states today to track HIV infection as an integral part of their AIDS reporting programs, urging that individuals be identified by name, as states now do with those who have full-blown AIDS.

But, while officials believe name-reporting to be the best way to conduct this surveillance, the Centers for Disease Control and Prevention will leave it to the states to decide on their own systems, including the use of so-called unique identifier codes.

The CDC said, however, that whatever system is chosen must meet specific requirements established by the agency, including strict safeguards to ensure confidentiality. The issue has been an extremely contentious one, especially in California.

Virtually everyone agrees that because infected people are generally staying healthy longer with the help of powerful new drugs, it is imperative to track HIV by infection as well as by AIDS cases to better understand the scope of the epidemic, where it is spreading and among what groups.

Such comprehensive information will better enable health officials to target areas eligible for federal AIDS funds for treatment, access to other services, and for education and prevention programs.

But AIDS activists and others worry that tracking those infected with HIV by name will result in people becoming reluctant to undergo testing because of privacy and discrimination concerns.

In its last session, the California Legislature passed a “unique identifier” bill, but it was vetoed by Gov. Pete Wilson, who agreed with critics that name reporting is more practical and facilitates partner notification. The issue is expected to be taken up again in January.

Several AIDS organizations in California welcomed the flexibility in the CDC’s new recommendations.

“Obviously, we wish [the recommendations] hadn’t been biased toward names,” said Fred Dillon of the San Francisco AIDS Foundation. “We are confident that we will be able to come up with a non-names-based system in California that will meet the expectations of the CDC.”

But some proponents of name-based reporting were disappointed. “The CDC has relinquished its responsibility of protecting the public against a deadly disease,” said Cary Savitch, a Ventura County physician who has organized a pro-names network.

The new guidelines are scheduled to be published in today’s Federal Register and will be open for public comment for 30 days before final guidelines are issued.

States will have several years to actually implement their reporting systems; while the reporting recommendations are not mandatory, the CDC will provide federal funds to states based on their ability to meet the reporting criteria.

The recommendations give the states a choice of using either names or a “unique identifier” code that still provides demographic information, such as “gay, white male,” without specifically identifying the individual.

A six-state study released earlier this fall suggested that tracking infection by names would not discourage a person’s willingness to be tested.

The CDC also urged the continued availability of anonymous testing services and recommended that states provide such options among its AIDS programs. In those cases, the names could be reported when patients sought treatment.

While all states, including California, track full-blown AIDS cases by name, 32 states report infection by name, including three that report only pediatric infections by name.

In the United States, about 700,000 individuals are HIV-positive and know it, while an additional 300,000 are infected and unaware of it, according to AIDS Action.

Cimons reported from Washington and Marquis from Los Angeles.