2.21.06 - Assembly Committee Passes Name Reporting Bill

Earlier this afternoon, the California Assembly Health Committee heard public comment and passed SB 699 (Soto), which will require that people infected with HIV be reported by name to local and state public health authorities. If enacted, this legislation would bring the reporting of HIV infections in line with the reporting of AIDS diagnoses (which have been reportable by name since 1983) and with over 80 other diseases and conditions that are currently required to be reported by name in California, including Hepatitis, tuberculosis, syphilis and chlamydia. Currently, over 40 states require HIV reporting by name. California is one of the few that reports HIV infection using a code (also called a unique identifier).

The San Francisco AIDS Foundation--which had a long history of opposing HIV reporting by name because of concerns that such a policy might deter some individuals from getting tested--re-evaluated its position late last year. The agency decided to support HIV name reporting legislation if provisions were included that ensured ongoing access to anonymous HIV testing and that imposed strict penalties for any breaches in confidentiality.

The agency changed its position for several key reasons. First, the federal government had made it increasingly clear that it would not accept HIV data from states that did not collect HIV cases by name. As a result, the state would be at risk for losing millions of dollars in federal funding from the Ryan White Comprehensive AIDS Resources and Emergency (CARE) Act. CARE funding, which totals over $2 billion a year, is currently allocated to states and cities based on the number of AIDS cases in each jurisdiction. That allocation methodology is expected to change in the near future to include both HIV and AIDS cases. If California's HIV data continue to be excluded, it has been estimated that the state could lose as much as $50 million when CARE resources are divided among the states.

In addition, it had become increasingly clear that California's non-name reporting system was quite cumbersome and costly to implement. Many jurisdictions--including Los Angeles and San Francisco--reported significant backlogs in finalizing HIV case reports and had difficulties de-duplicating cases. This growing backlog makes it difficult to accurately quantify changes in HIV infections throughout the state. There is also little evidence to show that states that had enacted name reporting policies--including states with some of the largest HIV caseloads--had experienced reductions in HIV testing or other negative outcomes. The New York AIDS Institute, for example, evaluated the impact of New York's HIV name reporting law on HIV testing trends in publicly funded counseling and testing sites and found that HIV testing rates did not change significantly in the year after the law was enacted.

"We are confident that this legislation will assist California in the fight against HIV/AIDS and will not undermine our efforts to encourage HIV testing or put HIV-infected individuals at risk of having their medical privacy undermined," said Mark Cloutier, SFAF executive director. "Not only will this legislation protect the state from losing millions in CARE Act funding, but it will ease the ability of localities to collect information about the epidemic, providing us with valid, uniform data for service and prevention planning. SB 699 also ensures that anonymous testing will remain available, which should reduce the impact this legislation might have on deterring people from getting tested for HIV."

Fortunately, public health reporting by name has been in place for many years for other communicable diseases--including AIDS--and California has an excellent track record of successfully protecting this confidential information. There is no evidence that the confidentiality of these lists has been breached in California. It is also important to note that only public health officials have access to these lists; employers and insurance companies do not. Additionally, under SB 699, the names of HIV-positive Californians will be reported only to the county in which they live and to the state; the federal government will only receive a unique code for each HIV-positive individual, not their actual name.

On January 19, 2006, the Senate unanimously passed SB 699 on a vote of 33-0 and the full Assembly is expected to pass it in the coming weeks. Governor Schwarzenegger is expected to sign this bill into law shortly thereafter. The bill gives the state one year to issue regulations needed to implement the new system. This means that name reporting of HIV-positive Californians is likely to go into effect sometime during the first six months of 2007.

"In the coming year, we will work closely with the state to implement California's new HIV reporting system," said Fred Dillon, SFAF's policy director. "We will do everything possible to ensure that system balances the need to capture accurate information about the scope of HIV disease with the need to protect the interests of Californians at risk for and diagnosed with HIV."