California May Start Tracking HIV Patients by Name

Opposition has lifted to legislation that would allow California health authorities to track HIV patients by name, effectively ending a years-long debate over privacy concerns and paving the way for the bill’s passage.

Onetime critics of the measure had worried that the approach would discourage people from getting tested for the human immunodeficiency virus and expose them to discrimination.

But with the federal government poised to cut funding for states that do not have a reliable HIV-tracking system as early as this fall, gay and lesbian lawmakers and advocacy groups said they had no choice but to go along with the change. California currently tracks HIV exclusively by alphanumeric code, along with just five other states and the District of Columbia.

“I personally would not have wanted us to do this,” said state Sen. Sheila Kuehl (D-Santa Monica), co-author of the bill, SB 699, and outgoing chairwoman of the Legislature’s lesbian, gay, bisexual and transgender caucus.

“This bill is only coming about this year because of the financial pressure from the federal government,” she said.

Longtime supporters of the names system, however, say the imminent switch is proof that HIV is no longer viewed as an exception among diseases, subject to different rules because of its stigma and potential for engendering discrimination.

The code system, which has been in place since July 2002, has been widely characterized as a costly bureaucratic mess, with doctors’ offices and laboratories reporting incomplete or erroneous information to local health departments. In turn, the local agencies have been unable to follow up on cases and provide accurate information to the state.

As a result, state officials say that they have not been able to accurately monitor HIV’s spread, which is crucial to deciding where to allocate prevention and treatment funds.

In July, the national Centers for Disease Control and Prevention issued a public letter saying it was critical for all states to move as quickly as possible to a names-based HIV-reporting system because the country needs a “single, accurate system that can provide national data to monitor the scope of the HIV/AIDS epidemic.” Besides California, other states with code systems also are looking at switching to names.

The sponsor of the California measure, Sen. Nell Soto (D-Pomona) said there is an urgent need for the bill, which bogged down last year. “It has to be done now,” she said, because of the possible loss of federal funding.

Soto’s bill could be heard on the Senate floor as early as Thursday. The Schwarzenegger administration has previously indicated its support for names reporting.

The bill would give the administration up to a year to draft rules for the new system. Because federal funding decisions are expected to be based in part on each state’s HIV cases beginning this fall, California could still lose money unless Congress or federal regulators step in.

Dana Van Gorder, director of state and local policy for the San Francisco AIDS Foundation, said his group supports Soto’s bill in part because it would impose stiff penalties on those who breach patients’ confidentiality and release information on their HIV status. Also, he noted, the bill maintains some provision for anonymous HIV testing at certain sites. Patients tested at these sites typically would be entered in the tracking system only when they sought care from a doctor or hospital.

“Ultimately, there may be some benefits to California ... going this way,” said Van Gorder, whose group once opposed a names-based system.

“After a few years of experience with code reporting, we have come to realize that it is in fact a more costly system that is not producing the kind of data that we would ultimately prefer to have,” he said.

The debate about how to track HIV patients has lasted for more than seven years in California. Those who favored a code system said they worried about the risk of leaks. Proponents of the name system said that California should monitor HIV cases as it does every other reportable disease, in a confidential database of names. Full-blown AIDS, which can take a decade or more to develop after HIV infection, has long been tracked by name.

The AIDS Healthcare Foundation, a Los Angeles-based HIV treatment and advocacy group, has consistently broken with like organizations in advocating vociferously for a names-based system. Its president, Michael Weinstein, hailed the changes.

“It’s undeniable that people do not feel the same way about this issue that they did years ago,” Weinstein said. “I think we’ve been successful in overcoming the stigma of HIV to a large degree, and now it’s important to normalize the treatment of HIV so that we can stem the tide” of new infections.