San Francisco Chronicle - Thursday, December 10, 1998
Jonathan Curiel, Chronicle Staff Writer

The alternative is using "unique identifier" codes that provide demographic information without identifying individuals by name.

The suggestion of a name-based system caused great concern last night among AIDS patient advocates in San Francisco.

"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," said Fred Dillon, state policy director with the San Francisco AIDS Foundation.

"We feel that the far better system is a non-name-based system that will give us the data we need without deterring individuals from HIV testing and treatment."

The CDC guidelines mark the first time that federal officials have formally asked states to consider name-based reporting. Currently, 29 states track rates of HIV infection by name. California uses names-reporting for full-blown AIDS cases but not for HIV testing, which is currently handled anonymously.

HIV is the virus that causes AIDS. Doctors and AIDS activists fear that name-based reporting would discourage people from being tested for HIV out of fear that their medical status might become publicly known.

"It (a name-based system) would be repressive and counterproductive," said San Francisco Supervisor Tom Ammiano.

"It's a terrible idea," said Larry Brinkin, who is coordinator of the Lesbian, Gay, Bisexual, Transgender and HIV Unit at the San Francisco Human Rights Commission. `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.

"Right now, even with anonymous testing, it's difficult to get people to trust that nothing will happen."

This year, Governor Pete Wilson vetoed a bill sponsored by Assemblywoman Carole Migden proposing to keep track of HIV infection by a system that uses codes, not names. Midgen's bill was widely supported by Dillon and others as a compromise between names- based reporting and no reporting at all.

Governor-elect Gray Davis reportedly has said he would sign a similar bill if it were passed again by the California Legislature.

The CDC's guidelines have been discussed informally for the past year. CDC officials believe they can better track HIV if names are used. They believe a name- based system gives them a better idea, for example, of which ethnic communities are undergoing the most rapid spread of HIV and where health officials might better concentrate their work. CDC officials were unavailable for comment last night.

The CDC said that whatever systems are chosen, states must meet specific requirements established by the agency, including strict safeguards to ensure confidentiality.

States will have several years to implement their reporting systems; while the recommendations are not mandatory, CDC will provide federal funds to states designing systems that meet performance criteria established by the agency.

The CDC already had told states they must start reporting the number of HIV cases in addition to full-blown AIDS cases so health workers can get a better handle on the epidemic.

The guidelines, published in today's Federal Register, are open for public comment for 30 days.

Dillon and others say it would be politically unlikely that California would go to name-based reporting -- but the CDC's new guidelines are a warning, they say, that anything could happen.

"I wouldn't rule anything out," said Dillon. "I believe there will be bills offered next year (that would require name-based reporting.)"

A San Francisco man who has tested positive for HIV, who did not want his name used, said, "I personally feel that name reporting is not a good idea. If they were to report my name to a national data base, I would feel threatened. I'm not out to my entire family."

"However," he added, "if they were to use some sort of code system as Carol Migden has proposed, I would support that."
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