Names as Weapons

Are San Diego County Health Services failing to stop the spread of HIV? Dr. Cary Savitch thinks so. And it's not just San Diego. "You're looking at the biggest public-health blunder of our lifetime," he says. The Ventura-based infectious disease and internal medicine specialist and the founder of a pressure group called Beyond AIDS is angry that doctors aren't required to report HIV patients' names to public-health authorities. That obligation only kicks in after patients have developed full-blown AIDS, perhaps ten years -- and sometimes many partners -- after they're infected.

"It's required by law that [doctors] report gonorrhea, syphilis, chlamydia, TB, salmonella...83 diseases that we can be cited for not reporting to public-health authorities, by [patient's] name. Yet not HIV, the most deadly of them all. How come?"

Savitch took an interest in San Diego's HIV problems after "friends in the San Diego health community" urged him to attend a November 4 San Diego County Health Services meeting, which resulted in the commission of a "feasibility study": should San Diego doctors be required to name HIV patients?

The study was commissioned in spite of an April 13 board of supervisors ruling that the county would not support any legislation requiring doctors to name their HIV patients to health authorities. Savitch says it's one of many government accommodations he feels compromise public health. And much of the blame, he claims, goes to the powerful AIDS lobby. "If they had it their way, there would never be [HIV] reporting. They don't want public health to have anything to do with partner notification. Period. Many of them don't look at the community at large."

The board of supervisors ruling has remained in place, despite activity at the state level last year that appeared to put the issue back in play. State Senate bill SB 1029, which sought to mandate HIV names reporting, failed. And although a contrary state assembly bill (AB 103) prohibiting HIV name reporting passed through both legislative bodies in Sacramento, Governor Davis vetoed it. The governor said he killed it because the state had not obtained federal funding to implement it (about $3 million, according to the San Francisco AIDS Foundation).

Perhaps because of that veto, San Diego County is taking another look at HIV naming. Dr. George Flores, San Diego's new head of public health, assigned Dr. Michelle Ginsberg to investigate. Her job is to see if naming names would improve partner notification and provide more accurate statistics.

Ginsberg, County Health Services epidemiologist, has been involved with AIDS reporting since the county's first case in 1981. "California is one of only four states that doesn't have HIV reportable," she says. "The Centers for Disease Control are strongly urging states to have HIV as a reportable [disease] for purposes of monitoring and planning. What we have had since 1983 is reporting of people [only] at an advanced stage [AIDS]. It doesn't allow for planning for resources we might require, if we had a better idea of how many people were going to need services."

But Mark Mischan, one of San Diego's most prominent AIDS activists, is suspicious of that November decision to conduct the study. "There's a lot of distrust of the system, of the way [public-health authorities] have handled confidential data. They will tell you otherwise, that they're absolutely confidential. We have seen breaches. And remember that in San Diego, being a border community, we have a large people-of-color population, whether it be Hispanic, Pacific Islanders, African-American, or Native Americans. They historically do not trust the system, and rightfully so."

Whether his fears are justified or not, Mischan says, the worst result for any policy is to discourage people from being tested. In this information age, where computer networks, hackers, and insurance databases can extract intimate details of people's lives, the threat of exposing HIV-positive sufferers is too great to leave in the hands of government employees. Especially, he says, when fears and prejudice are still strong in San Diego.

"We see that people are losing jobs, people are still being forced out of housing situations, when somebody finds out they're HIV-positive. There is still a negative social stigma attached to it."

But Dr. Flores says these worries are groundless. "There has not been one major breach of confidentiality of that nature," he says. "It is certainly a top priority for public health to assure that all reporting of any of the reportable diseases is handled with the utmost care and confidentiality. Staff receive training on this, and there is continuous surveillance of the chain of reporting. We believe that the public should have the utmost confidence that this information would not fall into the wrong hands."

Except, Mischan points out, that's exactly what happened three years ago.

"We've heard the horror stories that came out of Florida," Mischan says, "where a person who worked in the Department of Health and Rehabilitative Services had access to names, and downloaded those files onto a floppy disc, and was distributing those on the street, so you could pull up a person's name to see if they were HIV positive."

U.S. health authorities are still stinging from that 1996 incident, which, according to Reuters, exposed the names of "nearly 4000" people with AIDS and HIV around Tampa Bay.

"And if the state and the feds know that [authorities] are collecting names locally," says Mischan, "what is to say they can't hold [San Diego] hostage by saying, 'Either you give us names [for our database], or we're going to withhold funding'? We know that can happen. I've seen enough snafus that I don't trust the system -- and I've been volunteering in it for eight years."

Mischan insists he is not against the reporting of HIV; he suggests it be done without using names. "We need to give a 'unique identifier' [code] system a chance, one that guarantees confidentiality. The two [state] bills, AB 103 and SB 1029, are very similar in what they were requesting. They both support HIV surveillance. The difference is, SB 1029, called the [Senator Ray] Haynes Bill, wanted to collect names and report them to the local health departments. AB 103, which still permits surveillance, would [use] a 'unique identifier'-based coding system."

Mischan also points out that the existing system already encourages, though doesn't mandate, patients and their doctors to initiate confidential partner notification. "[If notified,] the doctors in the health department can contact a person and say, 'We have reason to believe you may have been exposed [to] a communicable disease' and encourage that person to come in for testing. That system is in place."

Mischan says he's not involved through self-interest. "I've been [HIV] positive for about 20 years and clinically diagnosed [with AIDS] 7 years. I'm considered a long-term survivor. My name has been surrendered to the CDC [as are the names of all patients diagnosed with fully developed AIDS]. I personally have nothing to lose. I'm trying to protect those people who we want to encourage to come in for testing. We want to protect their confidentiality."

Mischan wants San Diego -- and California -- to use the state of Maryland's model. Under that system, doctors of HIV-positive patients would forward a 12-digit number to public-health authorities. The first four numbers would be the last four of the person's social security number, the next six would be date of birth, and the last two would indicate race/ethnicity and gender, using a code already established by the CDC. The patient then talks to public-health workers and, identified only by that number, gives them names of partners to notify.

It works, says a December 1997 study by the American Civil Liberties Union AIDS project. "Maryland's increasingly successful experiment with unique identifiers suggests that effective HIV case reporting can occur without name reporting."

For Mischan, the main benefit is that more people will come forward. People forget, he says, the emotions that such a diagnosis can generate. "Since the epidemic has crossed over into the heterosexual community, we've heard many cases of domestic partner abuse, against people who even suggest [to partners] there might be a need for testing. People say they're afraid to be tested because if you go in and notify their partner, using their name, you're putting them at risk of violence."

But for Savitch, cryptic codes will just create more obfuscation, when clear leads to partners are top priority. And with up to 900,000 Americans living with HIV (100,000 of them Californians, an estimated 9000 of them San Diegans) and 40,000 more being infected every year, the time has come to go beyond education to more strident measures. The need, he says, is to curb the actual behavior that spreads the disease in the first place.

"The World Health Organization tells us how bad the disease is and that we need more education, but when it comes down to practicing public health, they're gutless. We support education, of course, but it's got to be more than that. The most educated group in our country is gay men, and they have the highest rate of infection. I think that many people live their lives honorably and would not dare infect anyone else, but there are people who don't care how many people they infect. Some of them are called the AIDS Kamikazes; others AIDS Gifters. They need to be restrained, period. The fact is that drugs may prolong people's lives. But what does that mean to the epidemic if you don't live honorably? People have a longer time to spread the disease."

Savitch says a Brown University study claims over 40 percent of HIV-infected individuals do not alert their sexual partners. But how far can public- health authorities go to stop such behavior?

"I don't like Big Brother. Nobody can prevent you from engaging in dangerous activity. But if I knew that you were intentionally infecting others, then I would definitely recommend that you be restrained, whatever that took. Because merely infecting someone is taking their life. If you were wielding a gun at people, we wouldn't think twice. I'm going to a funeral tomorrow of a wonderful guy who would never have infected anyone else. But somebody infected him. He had the most miserable last six months. Nobody could suffer the way this guy did. Do you think this man was concerned about whether this was a reportable disease or not? All he wanted to do was get rid of the headaches and the constant vomiting.... We add to HIV's stigma when we make it so different. The life expectancy of a gay man in the United States is 42 years. That needs to be stopped. But the control of this disease is in the hands and the hearts of those who are infected. And it's sad that AIDS activists like Mark Mischan don't see it that way, that they see everybody who opposes them as some sort of homophobe."

For his part, Mischan worries that the county's feasibility study is a political smoke-and-mirrors game. "They say, 'Trust us. Trust us.' How can we? This study at least should have gone out to a third party who could be neutral about the topic. You cannot trust the people who are already in the system and pushing for these issues."

Michelle Ginsberg says she expects to have the study ready to present at a public meeting on February 3.

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