Cause of Death: Excessive Privacy

You can die HIV-positive in Broward County, and your sexual partners will never know

Sometime within the past four years in Broward County, a man in his early twenties developed a fast-spreading infection in his lungs and died within days. Because of his youth and the suddenness of his death, the man's body came under the scrutiny of Broward County Medical Examiner Joshua Perper.

After opening the man's chest cavity and examining his lung tissue, Perper was able to confirm the original diagnosis: The man had died of acute pneumocystic pneumonia. Perper's examination, however, did not end there. As he explains in the precisely modulated tones of a professor addressing medical students in a classroom, "This now is suspicious."

This type of pneumonia can indicate the presence of HIV. "So now we do the test," Perper continues. "What we now discover is that the virus is indeed present."

There was no record the man had ever been tested for HIV. There was no record he had ever sought treatment for his infection. At that moment Perper was in all likelihood the only person on the planet to know the man had been HIV-positive.

To Perper's intense frustration, he still is.
Instead of going to the dead man's wife, partner, lover, mistress, soul mate, intimate friend, favorite prostitute, or most recent one-night stand, the news of his infection was buried with his body.

This case -- just one among many similar cases in Perper's files -- is an example of how privacy concerns sometimes conflict with common sense in an age when early detection of AIDS can mean the difference between life and death.

Since the development of protease inhibitors, the preferred treatment for HIV infection is to overwhelm the virus with a mixture of drugs -- the so-called "AIDS cocktail" -- as quickly as possible, well before the patient develops outward symptoms. Using this "avalanche method" of treatment, doctors are often able to drive the HIV level in a person's blood to undetectable levels before the virus has a chance to develop into life-threatening, full-blown AIDS.

For three years Perper has been pushing a two-pronged plan that would involve increased testing for HIV by the medical examiner's office coupled with a formal process for the identification and notification of at-risk partners.

Perper's plan would involve close cooperation between his office and the AIDS Surveillance Program of the Broward County Health Department, and it constitutes a radical change from the way his office currently handles HIV detection. As things now stand, Perper doesn't even test for the HIV virus unless he suspects the virus may have played a role in the subject's death. What's more, in cases where he does discover a previously unreported infection, the information doesn't leave his files.

So far both aspects of Perper's new model have been hit with objections. For one thing, his proposal to expand HIV testing to include deaths in which the virus had no part (e.g., car wrecks, suicides, homicides) expands his normal scope. "As a medical examiner, I'm not supposed to be involved in conducting pure research on the subjects of my examinations," he says. "My primary responsibility is to determine cause of death."

The other of his ideas -- formal partner notification -- has fared even worse with some reviewers. In fact, county lawyers have ruled that Perper's proposal is flatly illegal. "We have researched this issue," says Kimberly Tendrich, chief legal counsel for the Broward County Health Department. "And we've determined that, in order to disclose HIV test results, you need the consent of the person who was tested. Obviously, if that person is dead, there's no way to obtain consent."

To Perper, whose calm, scientific manner gives him a somewhat Spock-like demeanor, such objections seem illogical. "The argument for nondisclosure is based on the fear that disclosure could somehow cause discrimination against the individual who was tested," he says. "Well, that is impossible, because the person is already dead."

Nevertheless Perper's plan still stirs fears among county health workers that partner notification could somehow leave the county open to lawsuits claiming violation of privacy. Such fears were stoked by a 1996 incident in which a Pinellas County health worker was fired after a list of county residents who were HIV-positive was mailed to the St. Petersburg Times.

Privacy has always been a genuine concern among health workers. It was even more so in the mid '80s, when the laws governing HIV testing were written in Florida. The goal was to encourage more people to seek testing, says Thomas Liberti, chief of the Bureau of HIV/AIDS of the Florida Department of Health. All kinds of safeguards were instituted to ensure that people would feel comfortable that their test results would remain private. One of these safeguards is the concept of "informed consent." Unless a person has provided explicit consent to an HIV test, it cannot even be administered. But what that means in a case when the subject to be tested is dead was never clearly addressed in the law.

Despite legal concerns Perper's ideas have received the enthusiastic support of many AIDS activists who work closely with at-risk populations. "As a human being and as a wife, I would want to know," says Pat Callahan of the county surveillance program. "I think it's a great idea."

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