HIV Testing & Reporting

Since testing for HIV infection first became available in 1985, the San Francisco AIDS Foundation has engaged in advocacy to enact public health policies that encourage individuals to learn their HIV-status and to protect the confidentiality and civil rights of people who test positive for HIV. These policies have included assuring the availability of anonymous testing, solid assurances about the confidentiality of HIV test results and laws that protect HIV-positive people from discrimination.

One particular focus of the debate on HIV testing has been over the reporting of cases of HIV infection to local and state public health officials for epidemiological and other public health purposes. Since 1983 -- in California and all other states -- diagnosed cases of AIDS have been reportable to public health officials using the name of the person diagnosed. There has been a long and difficult national debate about whether and how to report the larger group of individuals who are infected with HIV but have not progressed to an AIDS diagnosis. As a result of this debate, policies on the reporting of HIV infections have varied widely across the states over time.

In 2002, California for the first time required the reporting of HIV infections to public health officials, but required the use of a code that cannot be linked to an individual's actual identity. This was done in order to provide greater safeguards around the confidentiality of the data and to minimize the risk that some individuals might be deterred from HIV testing and treatment if HIV infections were reported by name. The federal government, however, has questioned the reliability of code-based HIV reporting systems and has refused to accept data from states, including California, utilizing such systems. In July, 2005, the U.S. Centers for Disease Control and Prevention formally recommended that all states switch to confidential name-based reporting systems.

Acknowledging that California's code-based system has been difficult and costly to implement and that the state risks losing substantial amounts of federal AIDS funding if it does not quickly change its HIV reporting system, the San Francisco AIDS Foundation re-evaluated its position on this issue in 2005. Based on data showing that name reporting does not deter individuals from being tested for HIV, the Foundation supported SB 699 -- the bill to switch California from code-based to name-based HIV reporting. The Foundation helped to ensure that SB 699 guarantees continued access to anonymous HIV testing for those who want to learn their HIV status without having a positive test result reported to public health authorities. The Foundation also helped to strengthen the confidentiality protections for HIV data.

Governor Schwarzenegger signed SB 699 on April 17, 2006. The State Office of AIDS is currently drafting the administrative regulations required to fully implement the new reporting system. Those regulations will be posted for public comment and must be in place by April 17, 2007.