San Francisco Chronicle, Friday, December 10, 1999
David Perlman, Chronicle Science Editor

Reaction was swift from AIDS advocacy groups, many of whom oppose any national reporting requirement for fear that any system based on names will discourage people from seeking testing.

The new guidelines were issued by the Centers for Disease Control and Prevention, which wants to track where and how the AIDS virus is spreading. The agency has kept complete records of patients with the diseases defined as AIDS since the epidemic began in 1981.

The CDC estimates that as many as 900,000 Americans are now living with HIV infection and that 297,000 of them have AIDS.

Although the federal health agency has been trying to create a national HIV reporting system for more than two years, maintaining the system's accuracy is difficult because most states and cities have anonymous HIV testing sites, and home testing kits can be bought anonymously at many pharmacies or even by mail or through the Internet.

California does not require any reporting of HIV cases, but AIDS cases -- like most other infectious diseases -- must be reported by law.

A bill sponsored by Assemblywoman Carol Migden, D-San Francisco, that has twice passed the Senate and Assembly would require reporting of HIV infection cases using a secret code instead of names, but it has been vetoed by both Gov. Gray Davis and his predecessor, Pete Wilson.

Davis said early this year, however, that he would sign a new version of the Migden bill if the CDC provided funding for the reporting system. The cost for maintaining such a statewide system has been estimated at $2 million a year.

Migden's bill has been supported by the state Health Department as well as by the California Medical Association and many other medical groups.

In San Francisco, Dr. Herminia Palacio, director of the Health Department's special projects, said the city is experimenting with a pilot project collecting information on new HIV infections using a cryptographic code instead of names. The reports contain detailed and coded information such as the person's gender, age, ethnicity and whether the infected person is in a "high risk" category of drug use, has other sexually transmitted diseases, or is a man having sex with other men.

Reaction to the new federal guidelines was both swift and predictable yesterday.

At the University of California's Center for AIDS Prevention Studies in San Francisco, director Thomas J. Coates called the CDC's system -- already operating in more than 35 states -- "a huge mistake" because it cannot detect when or where the HIV infections have occurred and surely would discourage many people from being tested or treated.

Far more effective, Coates said, would be a system based on reporting HIV cases detected in prenatal clinics, substance abuse services and clinics for sexually transmitted diseases. Such a "sentinel surveillance" system would give truly useful information for effective HIV prevention planning, Coates said.

"I see any disincentive to undergo HIV testing as a problem," Daniel Zingale, executive director of AIDS Action, a Washington-based advocacy group, told the Associated Press. "Anything that's keeping people away from knowing their HIV status is a bad idea, unless there's a compelling reason to do it," he said.

The San Francisco AIDS Foundation, however, issued a statement yesterday supporting a statewide HIV reporting system that could be transmitted to the CDC as long as it uses codes rather than names, and urged the governor and the legislature to move swiftly in developing the system.

Thirty-four states have developed HIV surveillance methods using the names of those who test positive for the virus, although the names are legally kept confidential and are not forwarded to the CDC. Four other states use some sort of code for their HIV reporting systems.

The CDC's new guidelines maintain that "confidential name-based" HIV surveillance is the best way to track how the infection is spreading, but that states adopting "coded identifiers" can count on technical and financial assistance from the agency.
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