San Francisco Chronicle - Monday August 14, 1989
Randy Shilts

Colorado, one of 28 states requiring the names of anyone testing positive on the HIV antibody test be reported to the state, is discovering that many gay men are edgy about their names being on a master list of the HIV-infected. To avoid ending up on the list, they simply write down Nancy Reagan when they are tested, and that's how it gets reported to the state.

High infection rates for Nancy Reagans in Colorado present a light side to the serious public policy issue of whether names of HIV-infected people should be reported to state health departments.

The debate has simmered since HIV antibody testing became widely available four years ago. Last November, the issue was even put before California voters in the form of Proposition 102, which was defeated. In recent weeks, the issue has exploded again in public health circles.

Ten days ago, the Centers for Disease Control released a state-by-state survey of reporting requirements along with the observation that such reporting can sometimes be "useful" for patient counseling, partner notification and referral of the HIV-infected to appropriate medical care.

CDC spokesmen went to great lengths last week to deny speculation that the survey was meant to encourage states to require reporting. "There's not enough known for us to come out and say it's good or bad," said Dr. Jeanette Stehr-Green of the CDC's AIDS program. "It's a complex issue that can't be taken lightly."

Others in public health, however, have long been chomping at the bit to get more extensive reporting of the HIV-infected, so that health officials can begin more aggressive tracing of sexual partners. These latent longings were further inflamed by recent breakthroughs in preventing Pneumocystis carinii pneumonia, long the major HIV-related killer.

Just about every medical expert now agrees that people at high risk for AIDS should take the test and, if infected, monitor their immune systems so they can make timely use of such prophylactic treatments. New York City Health Commissioner Dr. Stephen Joseph last month said that such treatments alone should be enough to reopen the debate about HIV reporting.

While this logic is initially alluring, it evades the damage that may be done by HIV reporting. First, many people at high risk for AIDS simply will not take the test if their names will be reported to the state.

The fears are not unfounded. After all, in most states, gay sexuality - a common way people get HIV-infected - is still a felony punishable by decades in prison. Intravenous drug users are even more skittish about landing on a government list.

"Just about anybody with HIV has a legitimate fear of getting their name on a list," says Ben Schatz, director of the AIDS Civil Rights Project of the San Francisco-based National Gay Rights Advocates. "Most people with HIV belong to groups that are socially and legally ostracized."

A recent study of 1,000 people being tested in local HIV testing sites by the University of California in San Francisco found that 60 percent said they would avoid testing if their names were being reported to the state. Conversely, the numbers of gay men being tested in Oregon doubled when the state dropped its name-reporting rule.

The yearning to test for medical purposes also needs to be tempered by a cold look at political and fiscal realities.

The federal government and most state legislatures have refused to provide the money for even the most rudimentary programs to deliver AIDS care. While it's admirable to talk of providing timely medical care to the HIV-infected, the mechanisms and financing needed to actually perform the task are nowhere near being in place.

"It's ludicrous to talk about providing treatment to people when most of the people they're talking about - intravenous drug users - have no access to these treatments," says Schatz.

What's ironic about the renewed reporting debate is that it comes at a time when huge numbers of people in high-risk groups, particularly gay men, are seeking confidential HIV testing to take advantage of new medical treatments. Moves to require reporting threaten to subvert this positive trend, leaving society to face all the negative aspects of such requirements at a time when no mechanisms are in place to reap the possible benefits.

Always watch for outdated information. This article first appeared in 1989. This material is designed to support, not replace, the relationship that exists between you and your doctor.

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