Bill OKd to Track HIV Cases but Not Names

In what would be a major shift in state health policy, the Legislature passed a bill Friday requiring California to track people who have the human immunodeficiency virus as well as those who have full-blown AIDS.

But bucking a national trend in favor of compiling names, the state’s new HIV tracking would be by alphanumeric code only. Government officials would not know the names of the patients.

The bill was a hard-won compromise between AIDS activists and organized medicine, designed to balance the desire for improved surveillance of a changing epidemic with concerns about privacy.

Supporters of the change say it would help better allocate resources for prevention and treatment as the epidemic silently spreads beyond the gay male community to an increasing number of women and minorities.

“There is a large population who are infected with HIV who are not having a sense of what treatment and services are available,” said Ellen McCormick, legislative advocate for AIDS Project Los Angeles. “We need a surveillance system that will reach these communities and do it in a way that doesn’t deter people from testing.”

Opponents, however, believe the state should collect names so officials can more easily notify sexual partners of the infected.

The bill “is a step backward,” said Dr. Cary Savitch, an AIDS physician. “It sends the clear message it’s not important for public health [officials] to know who is infected. . . . At the altar of civil rights, people are dying in large numbers.”

Opponents hope to convince Gov. Pete Wilson to veto the bill. The governor has not had a chance to review it and has taken no position on it, a spokesman said.

In the past, California has tracked AIDS patients by name, but has not tracked those with HIV who do not have the full-blown disease. That strategy has been increasingly ineffective as drug therapies have slowed patients’ progression to AIDS. The state had been using its AIDS tallies and spot HIV testing to estimate HIV prevalence.

“We just can’t do these estimates anymore,” said Richard Sun, the state’s chief HIV/AIDS epidemiologist. The most recent estimates available place the HIV-infected population at between 94,000 and 130,000 in California; about a third have AIDS. Under the new bill, doctors or laboratories would forward a unique code for each patient to county health officials, who would pass the information to the state. The name would remain with the doctor or the lab and could not be passed on to public health authorities.

The bill--set to take effect by 2000 and expire in 2004--passed the Assembly on Friday, 52 to 7. But the Senate approved it by just 22 to 15 Thursday, mostly because of opposition from Republicans, who have argued for collecting names.

“It’s a sound bill--one that shouldn’t be caught in the whirl of politics,” said Assemblywoman Carole Migden (D-San Francisco), who introduced it.

The bill’s passage caps several years of efforts to improve AIDS surveillance in California, succeeding where other proposals failed. It represents a significant compromise between AIDS activists--a 40-member California HIV Surveillance Coalition--and the powerful medical lobby, including the California Medical Assn. and the California Conference of Local Health Officers.

Many activists until last year had opposed any reporting of people with HIV but without AIDS, fearing privacy breaches. But the major national organizations shifted their stance as AIDS-only surveillance proved woefully inadequate. And the California Medical Assn., much to the distress of some members, abandoned its insistence on names reporting, at least for now.

“The original thought was we’d like to treat HIV like any other communicable disease [which means reporting by name and tracing contacts]. But in the political arena we’re in, that is not acceptable by everybody,” said Carrie Fletcher Stover of the medical association. “This bill is a decent compromise. We’re definitely moving in the right direction, getting surveillance sooner rather than later.”

Opponents say the bill at best represents a delay of the inevitable--that the coded system, like others before it, will prove cumbersome and error-prone and will need to be replaced with a names-based approach. At worst, they say, the bill will cost lives.

These critics want California to go the way of 32 other states--including, most recently, AIDS-battered New York--all of which track by name.

California is one of only a handful of states to adopt a coded approach. Only Maryland and Texas have track records with the system, and Texas is considering abandoning it because it has not worked, officials there say.

“The Migden bill is just a very bad public health bill,” said Dr. Shirley Fannin, director of disease control programs for Los Angeles County. “. . . It doesn’t recognize that we have an obligation to the [unwittingly] exposed population.”

Some doctors decried the state medical association’s compromise.

“Their rationale is: This is a halfway step, the best we can get,” said Dr. Ronald P. Hattis, who chairs the association’s panel on public health and preventive medicine but was giving his personal opinion. “I believe the majority of physicians and public health officials believe it’s a bad bill.”

Many activists fear that name-based reporting would scare people away from HIV testing, especially if testing is linked to a requirement that public health officials notify any possibly infected partners--the approach New York has taken. Even if partners are not supposed to be told who infected them, the argument goes, people who test positive will fear for their confidentiality.

This is especially true of women, said Eileen Hansen, public policy director of the AIDS Legal Referral Panel and a co-chairperson of the HIV coalition.

“Names reporting is put out as something that would help women,” she said, “but women are often the victims of domestic violence once their partner is notified, even if it’s the husband that infected them. Women are very, very concerned about having their names reported.”

Times staff writer Max Vanzi in Sacramento contributed to this story.