Cause of Death: Excessive Privacy

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."

The sentiment is echoed by John Weatherhead, executive director of Center One: "In general we have an obligation to try to notify partners of HIV-positive persons. The normal mechanism would be to work with the HIV-positive person himself, but obviously that is not an option here. So theoretically I have no objections."

Practically, however, others do have objections to the medical examiner's involvement. "I know some other states did some experimentation with this approach some years ago," says Pam Potter-Ricco, spokesperson for the HIV Program Office of the Florida Department of Health. "They determined that, compared to other forms of outreach, it wasn't a very effective way to promote HIV testing."

But critics like Potter-Ricco are missing the point, says Perper. His idea isn't to replace other outreach programs, he says, but to fill a gap that was never anticipated when the laws were written.

The need to inform is not a frivolous one. Since statewide reporting of HIV infections was instituted last summer, more than 5000 positive test results have been reported across the state, making Florida the number one state in the nation for new HIV-positive infections, Liberti says. (The reporting of full-blown AIDS, in which the symptoms are apparent, has been in operation since 1987.)

In Broward County, Perper says he's examined ten bodies just in the last year in which the HIV virus was present and there was nothing in the medical history to indicate that anyone, including the deceased, was aware of it. There could well be others, because Perper doesn't even perform the test unless he suspects HIV infection may have played a role in causing death.

Regardless of the numbers, though, Perper believes that "even if you save only two lives, [partner notification] would be worth it. My philosophy as a physician is that it's very important not only to treat disease but also to prevent disease and to prolong life."

Under a new state law to take effect this fall, the medical examiner will be allowed to release HIV test results to paramedics who were exposed to the deceased's blood during treatment. Although the wording of the law would seem to restrict its effect strictly to cases where paramedics were involved, Liberti says his office is exploring ways of interpreting it to legally accomplish the sort of partner notification that Perper has in mind. "What we'll do is work with the state medical examiner's association to develop policy and procedures that could be used across the state."

Perper realizes that if his ideas for partner notification are ever implemented, the implementation would require the use of a trained social worker or therapist -- someone who could deliver devastating news in a thoughtful and empathetic manner and be prepared to deal with emotions ranging from rage to heartbreak.

He's convinced of one thing: Somewhere in Broward County, at this moment, someone is feeling weak and wondering why. Maybe they're already throwing up; maybe they're just starting to mull whether to miss a day's work to get an antibiotic prescription renewed. Sooner or later, they'll realize just how sick they are. Too bad it's later rather than sooner.

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