Tests and Consequences

The Struggle Over HIV Information Goes On

Last week New York's highest court decided that a man who didn't report being HIV positive when he applied for disability insurance was nonetheless entitled to receive his benefits. The ruling was "big," according to insurance lawyer Mark Scherzer, who represented the defendant. But the breakthrough decision, which comes during the comment period on the state's new law requiring doctors to report the names and ask about needle-sharing and sex partners of people with HIV, is also a reminder of the potentially disastrous use— and misuse— of information about HIV status.

The defendant in the case, referred to in court papers only as John Doe, bought a disability insurance policy from New England Mutual Life Insurance in 1991. Though he had recently tested positive for HIV, he checked the "no" box on his application when asked if he had had any medical abnormalities in the past five years. Five years later, in 1996, he became disabled from an opportunistic infection and filed a claim. The company paid him around $5000 a month in benefits, but at the same time sued Doe to get that money back, claiming he was only covered for sicknesses that began after his policy.

After three years of legal back and forth, appeals court judge Rosenblatt ruled that a state law from the '50s, which limits to two years the amount of time an insurance company has to investigate a policyholder, trumped insurance-company clauses that exclude preexisting conditions. The precedent-setting decision, which cannot be further appealed, will affect several other disability-benefits cases now pending in New York State, according to Scherzer.

Judge Rosenblatt's decision was in keeping with several other states that have ruled in favor of policyholders. But there is another school of legal thought that sides with the insurance companies, allowing them to deny benefits to people who knew about conditions but didn't disclose them. Indeed, the highest court in New Jersey came down on that side of a similar case in 1994.

And while Rosenblatt acknowledged that his decision could encourage people to be less than honest when applying for insurance, he also recognized the importance of protecting the disabled. Indeed, while HMOs and other health insurers are forbidden to deny policies based on such personal information as HIV status, disability insurers can and do legally turn down applicants because of their health. If John Doe had told the truth, he very likely would not have received any coverage at all.

And there are myriad other reasons people with AIDS might not want their HIV status known. More than 15 years into the epidemic, for example, owners of very small businesses still can legally fire employees based on their HIV status. Some private clubs also get away with discrimination. And that's to say nothing of the personal stigmatization that is impervious to the law.

Consider this as the backdrop for New York's imminent policy of requiring medical personnel to report to the state the names, addresses, and demographic information of those who test positive for HIV. The proposed specifics for implementing a state law passed last June will probably go into effect sometime this summer, after the health department has considered the public comment offered in the 45-day period that ends April 30.

And while some details may be refined, the basics are already set in stone. Not only will the names of people with HIV be reported, but doctors will soon be forced to ask those infected for the names of their lovers and needle-sharing partners. (There are no penalties for not answering, though people will be encouraged to do so.) Health workers would then inform those partners that they have been exposed to the virus. Anonymous testing will still be available under the proposed plan, though even people who are tested anonymously will be re- ported if they seek medical treatment.

According to the state, this increased surveillance will improve tracking of the epidemic and alert unsuspecting people that they have been exposed so they can get treatment, if necessary. Many critics, however, think that the law will have the opposite effect, driving patients from the health system because of their fears about what might happen if employers, insurers, and even family learn of their infection.

"People are afraid to trust that this information is going to be protected," says Elizabeth Gery, medical director of Gay Men's Health Crisis's center for testing and counseling. Gery says she regularly sees patients who fear their medical information will end up in the wrong hands. One "high-end executive" she treated recently was even considering dropping out of treatment and asking his physician to destroy his records for fear that his HIV infection would be discovered.

For poor people, who are often less able to defend their rights in court, the impact of the new law may be even greater. Though the proposal requires health workers to "screen" for the possibility that informed partners may become violent and abusive with those they suspect of infecting them, advocates for the poor have criticized the domestic-violence prevention plan as weak. And, despite the fact that the contact-tracing provision of the law is voluntary, critics say many people will interpret requests for names as a mandate. "Our concern is that people aren't going to feel strong enough to say, 'I'm not going to give that to you,' " says Gery.

Department of Health spokesperson Frances Tarlton insists that the reporting of partners is optional and that health workers will under no circumstances reveal the name of the person who reported the contact. "It will provide an easy way to notify partners because the health worker doesn't name or reveal anything about an individual no matter how many guesses a person might take," says Tarlton, adding that "HIV-infected people have an ethical responsibility to inform people they may have infected to allow them to be tested and get into early treatment."

Tarlton also notes that name reporting and contact tracing are standard for other sexually transmitted diseases, such as gonorrhea and syphilis. In health department programs that now respond to these other infectious diseases, about 80 percent of the people involved voluntarily name partners when asked, says Tarlton.

Indeed, supporters of partner notification and contact tracing often say that not to use these same practices for HIV infections constitutes a form of "AIDS exceptionalism." Yet some AIDS advocates, in turn, say this "exceptionalism" is justified by the special social risks that have so far been part and parcel of living with HIV. "AIDS isn't the same as other STDs," says Gery. "When's the last time you saw someone evicted because they had chlamydia?"

slerner@villagevoice.co

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