Law could result in fewer people being tested for HIV

By Rebecca A. Clay

Activists didn't resist when public health authorities started recording the names of people with AIDS at the beginning of the epidemic. After all, they reasoned, the short life expectancy of people with AIDS meant their names wouldn't be in government databases for long. And the very fact that they had been diagnosed and entered treatment meant their privacy had already been compromised.

But now the U.S. Centers for Disease Control and Prevention (CDC) wants more. The CDC is urging states to require physicians, clinics and other health-care providers to provide state health departments with the names of people testing positive for HIV as well as those with AIDS. That has members of APA's Ad Hoc Committee on Psychology and AIDS (COPA) and others alarmed.

"AIDS reporting and HIV reporting are completely different things," says former COPA chair Patricia D. Hawkins, PhD, associate executive director of the Whitman Walker Clinic in Washington, D.C. "With HIV, you're talking about perfectly healthy people who might be in the database for 25 years. With the database sitting there for so many years, there's greater potential for abuse that could have a big impact on people's lives."

A deterrence effect?

The push for reporting the names of people with HIV arose from changes in the epidemic itself. With protease inhibitors seemingly transforming HIV from a fatal disease to a chronic one, deaths from AIDS are dropping in this country. That means tracking AIDS cases no longer gives an accurate picture of the epidemic.

Adding HIV to surveillance efforts provides epidemiological data about what's happening today rather than what happened a decade ago, allowing better targeting of prevention efforts and funding allocations. Using names to track HIV allows state health departments to follow up with individuals and their partners and enhances accuracy by preventing double-counted cases. At the CDC's urging, almost two-thirds of states already have names-based HIV reporting.

Hawkins and other COPA members agree that HIV reporting is necessary. What they don't agree with is the use of individuals' names. Fears about whether confidential testing is truly confidential may deter people from getting tested and into treatment, they worry. Possible ramifications of confidentiality breaches include workplace discrimination, loss of insurance and ostracism.

"Disclosure of HIV can mean disclosure of homosexuality or drug abuse," says José Toro-Alfonso, PhD, associate director of the University Center for Psychological Services and Research at the University of Puerto Rico in San Juan. "Names-reporting may make people feel so vulnerable, they decide against testing."

Not so, says the CDC. In a recent issue of the Journal of the American Medical Association (JAMA), CDC researchers reported no significant decrease in HIV testing in the months following the introduction of names-based reporting in six states. According to the authors, most studies suggesting that reporting names would deter people from testing have relied on surveys asking hypothetical questions about what people intend to do rather than questions about people's actual behavior.

In the same issue of JAMA, however, researchers from the University of California, San Francisco, reported that people who were tested anonymously sought testing and treatment more than a year earlier than those who were tested at sites requiring individuals' names. Toro-Alfonso also points out that the CDC study relied on data from states with relatively low incidences of HIV infection.

"Areas where the epidemic is concentrated tend to be minority-dominated," he explains. "Minorities' traditional distrust of government agencies may make them less likely to come forward for names-based testing."

That's especially true for immigrants and refugees, says Frank Y. Wong, PhD, director of research and evaluation at the Fortune Society in Manhattan. Try explaining names-based reporting to someone from a dictatorial regime, someone with limited English skills or someone who's convinced you're from the Immigration and Naturalization Service, he says. "Basically you'll drive a lot of them underground, and they won't get tested."

The possibility that reporting names will deter those at highest risk isn't COPA's only concern. For Alex Carballo-Diéguez, PhD, the "most complicated, most dangerous and most cost-inefficient" part of names-based HIV reporting is the partner-notification efforts that sometimes accompany it.

Consider New York, which recently passed a names-based HIV reporting law requiring the health department to track the sexual partners and needle-sharers of those testing positive. Carballo-Diéguez can't imagine how the health department will handle his research population--men who have sex with up to 2,000 men in a typical year. The possibility of an individual reporting several hundred partners whose identities he doesn't know isn't far-fetched, he says.

"Tracing these contacts would require an enormous amount of work by an army of individuals, with the sole purpose of informing them that there's a likelihood they were exposed to HIV," says Carballo-Diéguez, a research scientist at the HIV Center for Clinical and Behavioral Studies at the New York State Psychiatric Institute and Columbia Univer-sity. "In this day and age, it's ludicrous to believe that someone doesn't already know that."

There's no evidence that notifying partners encourages those partners to get tested, says Carballo-Diéguez, adding that notification could lead instead to retaliation. Limited resources could be better spent on ensuring that those who test positive actually have access to treatment, he says.

A balancing act

Given these concerns, how can psychologists help states balance public health and individual privacy? COPA members have several suggestions.

First, psychologists should urge states to use unique identifiers rather than names. Although a CDC evaluation of the two states using unique identifiers found the method overly cumbersome, COPA believes the system hasn't been given a real chance. No matter what system states put in place, they should also use prevalence surveys and other standard epidemiological techniques to get a better idea of how the epidemic is affecting populations least likely to get tested.

Second, psychologists should ensure that anonymous testing is preserved and promoted as an alternative for those who prefer not to give their names. Because public funding for HIV/AIDS prevention and treatment services may be tied to the results of names-based reporting systems, some fear that anonymous testing could lead to reduced allocations in the hardest hit areas. COPA believes the need to keep testing available to everyone outweighs this concern.

Finally, psychologists should work to strengthen their states' confidentiality protections and help their patients understand the potential risks of consenting to names-based testing. In some states, for instance, legislators have attempted to pass laws allowing HIV databases to be matched against professional licensing rosters as a way of rooting out HIV-positive teachers or physicians. Stronger protections are especially important at the federal level, says Hawkins, adding that stiffer penalties for violations are crucial.

"We shouldn't have to depend on individual states for privacy," she says. "The potential for abuse is there."

Rebecca A. Clay is a writer in Washington, D.C.



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