Bay Area Reporter - December 15, 2005
Matthew S. Bajko, m.bajko@ebar.com

The bill will be fast tracked, and barring any last-minute opposition, could go before the governor for his signature as early as February. The switch in reporting systems will avoid a financially devastating showdown with federal health officials, who will require states report HIV cases by name starting in October 2006.

Currently, a unique identifier is used for HIV-positive people and given to state health officials, who despite acknowledging the system is more cumbersome and expensive than a names-based one have defended it. Up until now, code-based supporters had been trying to convince the Centers for Disease Control and Prevention not only to accept the state's code-based system but also pay for studies examining its accuracy.

However, the CDC has consistently made clear it had no intentions to do so and threatened that California's refusal to make the switch could cost the state $50 million in AIDS care funding.

This spring, a similar bill in the state Senate stalled due to opposition from the San Francisco AIDS Foundation along with counterparts in southern California, such as the Los Angeles Gay and Lesbian Center and AIDS Project Los Angeles. For years, the agencies have fought against seeing a names-based reporting system for people with HIV, fearing such a system would result in less people getting tested for HIV or people's confidentiality could be breached.

Dana Van Gorder, the foundation's director of state and local affairs, said it became increasingly clear this summer that code-based supporters were fighting a losing battle.

"In light of changing circumstances we sort of reluctantly said we are being forced in this direction. California stands to lose entirely too much money for AIDS services if we don't switch," he said.

Asked if the foundation's change in position was a capitulation, SFAF Executive Director Mark Cloutier instead said the agency didn't have much choice in the matter.

"In a way, we are being held hostage, and I would say, on the other hand, many of the concerns that we and activists had about names-based systems have not materialized," he said.

Van Gorder characterized SFAF's decision as a realization that going to a names-based system was inevitable.

"In July, it became painfully obvious both that the CDC intends to drive all of the states to a single system of names reporting, and additionally, that Congress in reauthorizing the CARE act is highly unlikely to permit the states to continue code-based reporting," said Van Gorder, referring to the Ryan White CARE Act, which is up for renewal. "We stepped back and reexamined our position both in light of what the financial implications would be for California and then also looking at data from other states that have moved from code-based to names-based reporting, notably New York, to see if some of our concerns had been realized in other places."

Neither a drop off in testing or a serious breach in confidentiality was seen, said Van Gorder. So instead of opposing new legislation, he said foundation officials opted to help craft a new bill to ensure it included language that preserved access to anonymous testing and increased penalties for violating people's confidentiality.

"The best thing we can do at this point is make sure whatever legislation accomplished this change addresses our concerns," he said.

Various AIDS agencies, advocates, health officials, and aides to lawmakers have been meeting since the summer to craft the new bill, which is being overseen by state Senator Sheila Kuehl (D-Santa Monica), a member of the legislature's LGBT caucus. While AIDS advocates wanted to introduce the bill in September, the caucus preferred to wait until the 2006 legislative session. In recent weeks more meetings have taken place to draft the final bill.

Just this week, in a written response to questions from Senator Tom Coburn (R-Oklahoma) Michael Montgomery, chief of the state's office of AIDS, said "a spirited debate" about HIV names reporting is ongoing in California. He also said if the state does implement HIV names-based reporting, it would use the same "proven secure practices California currently has in place for collecting AIDS cases by name."

He also noted that in over 20 years of using the system for AIDS cases, the AIDS office "has never had a breach in confidentiality."

Ged Kenslea, communications director for the Los Angeles-based AIDS Healthcare Foundation, said his agency is glad to be working with other groups in the state to make the switch in reporting systems. AHF has long pushed for the state to utilize a names-based system.

"California usually leads the nation with a lot of its legislation and policy. This is one instance where we are coming late to the table," he said.

Though he said the legislation's passage is still not ensured.

"I would not say it is a slam dunk," said Kenslea.

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