California May Soon Require that People with HIV Be Reported by Name

Since the earliest days of the AIDS epidemic, the names of people diagnosed with AIDS have been reported to county and state governments. Currently, people in California who are HIV positive but have not progressed to AIDS are reported to health officials using a code rather than a name or any other identifying information. The San Francisco AIDS Foundation and other AIDS advocates have supported this approach, emphasizing that code-based reporting provides the highest assurances that individuals at risk for HIV infection will feel more comfortable seeking HIV testing and that the civil rights of HIV-positive people will be protected.

In recent months, however, it has become clear that the federal government is giving California little choice but to replace its current code-based HIV reporting system with one that requires the reporting of individuals' names. At this time, forty-four other states in the country have enacted name-based HIV reporting systems.

Dr. Julie Gerberding, Director of the U.S. Centers for Disease Control (CDC), recently issued a strong recommendation that all states adopt confidential name-based reporting systems. Dr. Gerberding wrote, "CDC's policy is to report HIV infection and AIDS case surveillance data only from areas conducting confidential name-based reporting because this reporting has been shown to routinely achieve high levels of accuracy and reliability." In fact, the CDC has refused to take any HIV data from California in recent months, declining to open envelopes from the state that contain disks of coded information.

The refusal to count California's HIV data could result in a significant loss of Ryan White CARE Act funding for HIV/ AIDS services throughout the state. CARE Act 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 2007 to include both HIV and AIDS cases. If California's HIV data continue to be refused by the CDC, it is highly likely that the state will experience a substantial loss in federal funding for HIV/AIDS services.

In the interest of protecting funding for vital HIV/AIDS services, the San Francisco AIDS Foundation and other advocates are currently working with California lawmakers to adopt legislation requiring health care providers and labs to report cases of HIV infection by name confidentially to local health departments. It is likely that name reporting legislation will be introduced in January of 2006 and move quickly through the legislature. Governor Schwarzenegger is expected to sign it.

In moving this legislation forward, the AIDS Foundation and its partners are working aggressively to ensure that California's name-based HIV reporting system minimizes the risk that some people might be deterred from seeking HIV testing and protects the confidentiality of people with HIV. It is expected that the legislation introduced in January will guarantee continued access to anonymous testing throughout the state. People who opt to be tested anonymously do not provide their names and will therefore not be reported to local health officials if they are found to be infected with HIV. We believe that the continued availability of anonymous testing should minimize concerns that HIV reporting by name might deter some high-risk individuals from being tested for HIV.

It is important to note, however, that once HIV-positive people receive diagnostic test results such as CD4 and viral load counts indicating that they are HIV-positive, their names will be reported. The proposed legislation moving California to name reporting will also include provisions that ensure the highest degree of confidentiality of named-based HIV data and significant financial penalties for inappropriate disclosure of these data.

In the coming year, the San Francisco AIDS Foundation will be working closely with the California Department of Health Services and the State Office of AIDS to implement California's new name-based HIV reporting system. We will do everything possible to ensure that the system balances the need to capture accurate information about the scope of HIV disease in California and the nation with the need to jealously guard the interests of Californians at risk for and diagnosed with HIV.