Tracking HIV Cases Next Focus of AIDS Fight

California and other AIDS-battered states appear headed for a dramatic shift in the way they track and report the disease--aiming to identify those in the earlier stages of HIV infection, as well as those who exhibit full-blown symptoms of AIDS.

In coming months, the U.S. Centers for Disease Control and Prevention will release HIV reporting recommendations to states, and ultimately could tie compliance to coveted federal funding. In addition, bills are pending in Congress to make HIV surveillance mandatory.

The California Medical Assn. is drafting a state reporting law, and New York, Illinois, Pennsylvania, Georgia and Massachusetts--all heavily affected states--have legislation pending or are in the process of implementation.

Though about 30 states keep track of cases of infection with the human immunodeficiency virus, even if they have not progressed to AIDS, some of the states most heavily affected in the epidemic, including California and New York, have clung to a policy of tracking AIDS cases only. This has been largely in response to AIDS advocacy groups who urged a balance between disease control measures and protection of privacy.

In recent months, however, major advocacy organizations have come to a remarkable consensus with public health officials that AIDS-only surveillance puts states at risk of losing track of the changing epidemic.

“This lack of information is endangering lives and undermining our efforts to fight the epidemic,” announced the Gay Men’s Health Crisis of New York, the nation’s largest AIDS organization, in a position paper last month.

Relatively quickly, the debate has shifted from whether HIV should be tracked to how it should be tracked--by name or by identity-obscuring codes? On this point, medical traditionalists and AIDS advocacy groups clash mightily.

With more patients staying healthy longer, many advocates and disease detectives agree that AIDS cases are no longer a good tip by which to measure the HIV iceberg. Nor can research and prevention dollars be appropriately allocated based on AIDS cases alone.

Ten or 15 years may pass between the time someone is infected with HIV and diagnosed with AIDS--plenty of time for whole communities and subpopulations to become quietly enveloped in the epidemic.

Advocates and health experts point to the virus’ stealthy spread among women, minorities and rural populations. They stress the importance of reaching people as early as possible, so they can be most effectively treated with life-prolonging drug combinations including protease inhibitors.

“In the early days of the epidemic there really was no treatment available,” said UCLA epidemiology professor Roger Detels. “What we could offer the individual who was HIV-infected was minimal. . . . But now, there’s a real benefit to knowing [who is infected].”

Nationwide counting of HIV cases could bring surprises, or even reconfigure the official map of the epidemic. One Mississippi health officer predicted that it would alert officials to growing rural pockets of HIV and perhaps draw more federal dollars to his state.

“Mississippi will never be a California, or a Florida or a New York, but . . . by including HIV reporting [as a criterion], we would get a more accurate distribution of federal funds,” said Craig Thompson, director of the state’s AIDS and sexually transmitted disease program.

The nation has recorded 612,000 AIDS cases since 1981--a third of them in California and New York. The HIV-infected population is estimated at anywhere from 650,000 to 900,000, according to CDC estimates.

Some skeptics say any HIV count, mandated or not, is destined to be low because as many as half the people in the country who are infected with HIV haven’t been tested or don’t know their status.

The greatest wrangling now, however, is over whether the government--local, regional or state health departments--ought to track HIV cases by name or by distinct codes.

Many public health officials say it is time to treat AIDS like any other public health threat. That means requiring health care providers to report those who are infected by name and pursuing aggressive “contact tracing” or notification of potentially infected partners.

Some advocates of using names refer disparagingly to the era of “AIDS exceptionalism,” characterized, they say, by the precedence of privacy and individual rights over tried-and-true disease control measures. They cite AIDS activists’ long-standing resistance to HIV reporting and officials’ reluctance, in the early days of the epidemic, to close gay bathhouses for fear of offending the gay community.

Name-based reporting and contact tracing are used for syphilis, gonorrhea and other, often stigmatized diseases, they say. Why not for HIV?

Names reporting “is the best way to do it. It allows us to do follow-up and it’s not that labor-intensive,” said Dr. Kris Moore, an epidemiologist at the Minnesota Department of Health, which has tracked HIV by name since 1985.

The American Medical Assn., the California Medical Assn. and various public health groups support name-based reporting, often insisting upon both strong confidentiality protections and ties to treatment.

Some, such as the California Medical Assn., also insist that anonymous testing sites should be maintained, in which people who do not want to reveal their identity can at least find out their HIV status. Under this complex system, such patients would only be reported by name when they sought medical treatment for HIV. Legislation backed by the state group is expected to be introduced this year.

But the idea of the government taking names alarms many AIDS advocates and patients. They contend that it is not necessary and risks dissuading some people from getting tested, particularly minority groups, who may be mistrustful of the government.

These critics point to potential leaks from confidential medical databases. They recall the flap in Florida in 1996 when a computer disk listing AIDS patients was allegedly taken by a health department employee who later showed it to others, boasting about his heist in a bar.

They describe a law in Illinois that allows cross-checking of health workers’ names with confidential HIV lists. Though the procedure has never been funded because of strong opposition, it remains on the books.

“I think there are real concerns about having these [permanent] registries” because laws protecting confidentiality can change, said Liza Solomon, a state AIDS program director in Maryland.

AIDS Project Los Angeles, the San Francisco AIDS Foundation and the Gay Men’s Health Crisis all have recently endorsed HIV surveillance on the condition it is done through a “unique identifier” system that would identify and track patients by codes. The AIDS groups and the American Civil Liberties Union are on record opposing names-based reporting.

These organizations argue that HIV is different from other diseases. It still has no cure. It still is associated with stigmatized groups--gay men, drug users, prostitutes, and now, ethnic minorities. Its victims, once identified, still suffer evictions, firings, hate crimes and hostility.

“It’s hard enough to get people into testing and treatment without the [added] fear of losing their jobs, their insurance, their family, their friends and getting thrown out of their house or school,” said Dick Pabich, San Francisco Mayor Willie Brown’s AIDS policy advisor. “It is certainly our feeling that whatever we would gain from names reporting would be counterbalanced by the loss of people dissuaded from testing.”

Moreover, some opponents of names-based tracking say the much-touted “tried and true” methods of disease-snuffing haven’t worked that well with sexually transmitted diseases besides AIDS. The nation is, they note, in the midst of a venereal disease resurgence.

Though both sides insist that science is on their side, recent research at UC San Francisco suggests that the answers are not clear-cut. Surveys in several states have shown that many people are not aware of HIV reporting laws and the testing options available to them, said the school’s Dr. Andy Bindman. People who delayed testing did so primarily because they were fearful of the results, not because they feared disclosing their identity, he said.

At the same time, UC San Francisco researchers also found that name-based reporting did not appear to help in getting patients into treatment earlier. Anonymous testing, however, was important in bringing about early testing and treatment, Bindman said.

“I can’t say we found a lot of compelling evidence” for either argument in the names-numbers debate, Bindman said.

Still, the CDC--which dispenses federal funding for AIDS tracking--has signaled that it will favor names-based systems. One key study published in the agency’s Morbidity and Mortality Weekly Report in January was highly critical of experimental unique identifier systems in Texas and Maryland, concluding that the records were too often incomplete.

Though critics of that study--including Maryland’s Solomon--believe that the experiment was underfunded and too limited in time, it increased skepticism among many in the public health sector toward coded systems. Many already considered them too cumbersome, confusing and expensive.

Meanwhile, some conservatives are applying legislative pressure. Rep. Tom A. Coburn, an Oklahoma Republican and physician, has introduced a bill that would not only mandate confidential HIV reporting in each state, but would require partner notification of infected people and HIV-testing for those accused of sexual offenses at the request of the victim.

Although the bill, which has a companion in the Senate, leaves room for states to adopt either names-based or unique identifier systems, its author is vocal in his belief that unique identifiers are inferior.

Coburn’s open disapproval of homosexuality and his contention that delays in HIV reporting in the most affected states have cost “half a million lives” have alienated AIDS organizations.

Despite all the tension, there is room, apparently, for compromise. One possibility, some suggest, is a nonuniform national surveillance system in which some states use identifiers and others use names. Though the CDC has indicated its preference for a uniform system, even Coburn is not insisting upon it.

Others see the codes as transitional, ultimately leading to name-based reporting. Whether or not that happens, many believe that the debate has enhanced awareness that fighting a scourge in the late 20th century does not invite simple solutions, either in medicine or public policy.

Some see the debate as healthy--and remarkable for its lack of entrenched positions. Even within the AIDS community, good friends and allies can respectfully disagree.

Howard Jacobs, 35, who has AIDS and volunteers at AIDS Project Los Angeles, is “leaning toward names reporting,” as long as it is linked to treatment. “We need to reconsider the age of AIDS exceptionalism and bring ourselves more into the mainstream of other diseases.”

Fellow volunteer Oscar Nava, 25, said he delayed testing because he was “afraid of the answer.” He said he would never have been tested if he thought the government was going to record his name. “There is no guarantee this information will not come out in [any] way, shape or form,” he said.

For the most part, the fight is not divided into “evil versus good” anymore, said Steve Heilig, education director at the San Francisco Medical Society. “It’s a debate among the people who know the most about AIDS. . . . The whole problem is, what [system] will we get the most benefit from without causing people to fear testing and treatment?”