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AIDS activists fight to keep HIV reports confidential

When Nushawn Williams was discovered to have infected at least 13 New York state women long after he knew he had tested positive for the virus that causes AIDS, New York Assemblywoman Nettie Mayersohn had the political ammunition she needed to push one of the most stringent HIV-reporting and mandatory partner-notification bills in the country into state law last month.

In doing so, Mayersohn was following the path of the anti-gay right, which has long sought to quarantine people with AIDS - even to deny funds for AIDS prevention. But Mayersohn, a liberal Democrat, says she was only seeking to establish sound medical practices. She cites a recent survey printed in the Archives of Internal Medicine that says that four in every 10 HIV-infected people polled at two New England hospitals failed to inform their sex partners of their condition. And she points to the growing public-health interest in reporting; so far, 32 states require doctors to report by name any patient who has tested positive for HIV.

Here in California, however, AIDS activists are fighting hard to make sure this state doesn't become the 33rd. Instead, they are backing a bill that would establish an HIV Surveillance Task Force to develop a statewide system called Unique Identifiers, which would track cases of HIV based on a unique code that does not report the name of individuals. Sponsored by San Francisco Assemblywoman Carole Migden, the system would bypass the question of requiring that partners be notified.

Mayersohn regards the task-force bill as nothing more than a dodge, and has persuaded her allies around the country to write to Governor Pete Wilson asking him not to sign the legislation when it hits his desk by the end of August. "It's a terrible bill," she says, "its only purpose being to block partner notification."

HIV testing has been a volatile political issue since the beginning of the epidemic. Early on, given the stigma associated with AIDS and the lack of effective treatment, traditional approaches to tracking and reporting outbreaks of venereal disease were seen as useless. Public-health authorities were convinced that effective prevention would be compromised if the people at risk were scared out of the health-care system.

Professionals and activists settled on a system of confidentially reporting AIDS cases to state and federal health authorities, while encouraging anonymous HIV testing. Now, however, as a result of dramatic improvements in the treatment of persons infected with HIV, surveillance of AIDS alone no longer accurately reflects the magnitude or direction of the epidemic. According to Lester Breslow, dean emeritus of UCLA's School of Public Health, HIV infections are increasing even as AIDS deaths are decreasing. Also, changing demographics - AIDS is fast becoming a heterosexually transmitted disease affecting people of color rather than just white gay men - are fueling efforts to treat the HIV-infected person no differently from the person with syphilis.

That means getting the infected person into treatment quickly, getting the names of his or her sexual contacts, and sending a health-department representative on house calls to talk to these individuals about stopping the spread of virus. "We can no longer provide political protection for the virus," Assemblywoman Mayersohn said when her bill passed last June 25. "This disease will no longer be in the hands of the AIDS activists."

But those activists remain skeptical of the reporting movement. Mandatory reporting, they say, would drive the disease underground. "Can you imagine a gay man going to get tested if he knew his partners were going to be notified by the health department?" asks Darrel Cummings, deputy executive director of the L.A. Gay & Lesbian Center.

Adds Eileen Hansen, public-policy director at the AIDS Legal Referral Panel in San Francisco, "We don't need names to get people into treatment, or to get better data." She says that states already have partner-notification programs urging people to notify all whom they suspect they may have exposed to HIV, so that they too may seek confirmation of their status.

Moreover, the activists contend, no law would have prevented Nushawn Williams - or anyone else - from knowingly infecting anyone. Hansen worries that the desire to punish Williams is being used as an excuse to punish people "traditionally underappreciated in our society - poor people, the homeless, people of color and drug users," under the guise of helping them.

That view continues to hold sway in California. Last year, the state's gay leadership rallied to kill a mandatory names-reporting bill sponsored by the California Medical Association. Passage of the Midgen bill would keep reporting at bay for at least another year.

But even among the AIDS-activist community, the united front on the question of testing is beginning to split. "There is a failure in our community to see that some of our ways of putting privacy above all else have failed," says Cesar Portillo, head of government affairs at the AIDS Healthcare Foundation in Los Angeles. "How are women in heterosexual marriages going to protect themselves without partner notification?"

At the same time, a growing cadre of public-health officials - including editors from the New England Journal of Medicine; UCLA's Breslow; Dr. Wilbert Jordan, director of the Oasis AIDS Clinic at King/Drew Medical Center; as well as the League of Women Voters - is pushing to end "AIDS exceptionalism."

Breslow says that a recent report from the Centers for Disease Control has confirmed the inadequacies of Unique Identifiers, citing poor reliability and duplication. The only two states that have implemented Unique Identifiers - Maryland and Texas - have been disappointed by the results, and Texas plans to disband its system.

Cummings of the Gay & Lesbian Center responds that the failures are a result of inadequate funding, and notes that the Centers for Disease Control refuse to pay for HIV-tracking programs that don't use names.

Cummings says he doesn't see how names-based reporting is more accurate when it comes to tracking HIV: After all, he says, people can lie about their names as well as their contacts. "What we need to do with HIV is a trend analysis, and you don't need 100 percent accuracy." In other words, the more varied the surveillance system, the more relevant the data that results from it.

In addition, Lupe Carreon, project director of the Women's Care Center at AIDS Healthcare Foundation, argues that there are good reasons why black women are eight times more likely to contract the virus than white women, and that these "reasons have little to do with failures in partner notification." She believes that people like Mayersohn should recognize that HIV infection takes place because people feel punished and outcast from society, and "thus don't or can't take care of themselves."

In the end, the whole debate may be more politics than substance. Even those who support name reporting, such as Marcia Angell, an editor at the New England Journal of Medicine, told The Atlantic Monthly last year that "Nobody can document or prove that traditional methods of control work better at containing AIDS because nobody has done what would be necessary to get such proof." In other words, no studies have compared two separate populations to see what makes some people seek treatment while others deny their infection, what leads some people to have safer sex while others expose their partners to infection because they fear disclosing their status to their partners or the authorities.