The Centers for Disease Control and Prevention (CDC) may eventually delegate HIV/AIDS funding based on a names-based reporting system, supporters of Senate Bill 945 (SB 945) say. The bill aims to replace California’s current code-based system of HIV reporting.

California is one of only 11 states that continue to use a code-based system while 38 states use HIV names-based reporting systems, according to AIDS Project Los Angeles (APLA).

Lee Klosinski, director of programs for APLA, explained the CDC would allocate Ryan White CARE Act funds on the basis of using reliable data by 2007.

“The only reliable data that the CDC will certify is names-based because they see all of the problems associated with a unique identifier like we have,” he said.

Klosinski explained that under existing legislation, when a person tests positive for HIV in California, that information is reported to the CDC as a unique identifier code based on certain pieces of information such as the month and year of birth, the individual’s social security number or other personal information.

But this information is not always correct, he said. Some labs don’t bother to fill out a slip to construct a code because there is no financial incentive to do so.

“They may not, because there’s really no stick, nor is there any carrot. That’s why the system now basically is not working,” Klosinski said.

The San Francisco AIDS Foundation opposes SB 945 and argues California should focus on insisting the CDC accept the data and work with the state to design a code-based system that is acceptable to the federal government.

“Our attitude is that each of the states should be permitted to decide what kind of system it wants to have, and the CDC should not be telling us what that system is,” said Dana Van Gorder, director of state and local policy for the San Francisco AIDS Foundation. “The CARE Act doesn’t specify what kind of system the state has to have and we believe that the CDC should be permitting us to continue to operate a code-based system.”

Van Gorder acknowledged when Congress reauthorizes the CARE Act this year, there is a good possibility they may require a names-bases system.

Rose & Kendal, a public affairs group based in Los Angeles and Sacramento, drafted SB 945 and found state senator Nell Soto, D-Ontario, to sponsor and introduce it on Feb. 22. On March 31, after its authors amended it, the bill was re-read and re-referred to committee.

Rand Martin, a lobbyist for Rose & Kendal, has heard various reasons to oppose SB 945.

“The three big things that we’ve heard are that this would lead to more contact tracing, it would lead to partner notification and it would shut down the anonymous test sites. The bill would do none of those things,” he explained. “In the language that we are working on right now, we’re going to make it explicitly clear that it does not do any of those things so that we can take those issues out of debate.”

West Hollywood Mayor John Duran has publicly voiced his opposition to SB 945. “As a person living with HIV, I believe the reporting of names to governmental agencies will deter those who do not know their HIV status and who are willing to get tested,” said Duran in an email message posted to a San Diego GLBT newsgroup.

He referenced the current system California uses, saying, “Today the County Health Department utilizes a unique identifier system to count HIV cases. They argue the system has problems and that it is imperative to have names. I say to the county: Fix the system.”

Klosinski said it will be important to have a names-based reporting system for HIV since it will enable APLA and other healthcare organizations to meet CDC and Health Resources and Service Administration (HRSA) requirements for funding from the CARE Act, which provides over $1.6 billion nationwide in critical funding for services for people living with HIV/AIDS, including drug treatments, primary medical care and essential supportive services.

Klosinski stands by SB 945’s protection of anonymity and said the real-time data they would be able to capture with a names-based system would help them tremendously.

“For us it was kind of the best of two worlds – the best methodology to get accurate data and the best means of protecting the concerns of people who genuinely want a truly anonymous test,” Klosinski said. “We feel strongly about the need to maintain that.”

SB 945 states the list of those who test HIV-positive could only be used for epidemiological purposes and would be kept confidential.

“… AIDS cases have been reported by name since 1981, and there has not been a single breach of confidentiality in all those years,” said Martin. “I think there’s a pretty remarkable track record for protecting the confidentiality of any names, not just AIDS.”

Terry Cunningham, chief of the San Diego County Office of AIDS Coordination, also highlighted the state’s level of confidentiality.

“In all of California we have never had a breach of confidentiality for AIDS names reporting,” he said. “AIDS names reporting has been going on since the beginning of the epidemic. So to not have HIV names reporting when we know that it’s going to be mandated in 2007 and that we are suffering basically because of it doesn’t seem to be wise in my opinion. I think we should go to HIV names-based reporting as soon as possible.”

Cunningham noted that San Diego County has lost $1 million in CARE Act funding over the last two years.

“I think that now we really know and there’s a proven track record that the confidentiality is maintained, always has been maintained and will be maintained, so to delay HIV names reporting any longer is really detrimental to San Diego County.”