California Faces Growing Pressure to Shift to Reporting of HIV Infection by Name

California has been under considerable pressure in recent months to abandon its current code-based HIV reporting system and replace it with a system that reports cases by name.  State legislation that would require such a shift (SB 945 - Soto) stalled in a committee of the Senate in May.  Today, however, a consensus appears to be building that the federal government is giving California little choice but to make such a shift if it wishes to prevent a significant loss of funding for HIV/AIDS services in California.  As a result, it is increasingly likely that legislation requiring health care providers and labs to report cases of HIV infection by name to local health authorities will be approved by the Legislature by the end of the current legislative session, which adjourns on September 9, 2005.     

Supporters of SB 945 have argued that California should change its HIV reporting system because the U.S. Centers for Disease Control and Prevention (CDC) has refused to accept HIV reporting data from eight states-including California-that report HIV cases by code rather than name.   This is due to the CDC's belief that code-based systems are not as accurate and reliable as name-based systems and make it difficult to eliminate duplicate cases of HIV infection between states.  Advocates are concerned that if California's data continues to be rejected by the CDC, the state and its nine eligible metropolitan areas (EMA's) could be at risk of losing millions of dollars in Ryan White CARE Act funding.  This is because the CARE Act requires that funds that are distributed based on AIDS case counts be changed in 2007 to include all individuals living with HIV disease, including both those with earlier stage HIV infection and those with AIDS diagnoses.

The San Francisco AIDS Foundation has opposed SB 945, arguing that code-based reporting provides increased assurances that individuals at risk for HIV infection will seek HIV testing and that the civil rights of HIV-positive people will be protected.  We have urged the CDC to work with the states to improve code-based reporting systems and develop processes for eliminating duplicate HIV case reports in order to assure the accuracy of the national HIV data set.

In recent weeks, however, it has become clear that the CDC is unwilling to accept anything other than HIV data that is collected through name-based reporting systems.   On July 5, 2005, Dr. Julie Gerberding, Director of the CDC, issued a letter that went as far as her agency has the statutory authority to go to recommend that all states adopt confidential name-based reporting systems.  Dr. Gerberding's letter states, "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."

Additionally, included among the principles the Bush administration has outlined for reauthorization of the CARE Act (see Federal Watch), is a continued call to use 2007 as the year in which HIV data will be combined with AIDS data to drive the allocation of CARE funding.  It is considered highly likely that as the bill is reauthorized, states will be obligated to collect HIV data by name or risk having their data excluded when funding allocations are determined.

In the interest of protecting funding for vital HIV/AIDS services, the San Francisco AIDS Foundation and other advocates recognize that California has little choice other than to adopt a name-based HIV reporting system.  The Foundation is working with other partners to determine the specific provisions that should be included in such legislation to ensure the highest degree of confidentiality and protection of this data.  In addition,  to reduce concerns that name reporting might deter some high-risk individuals from being tested for HIV, we will work to assure that the legislation guarantees reasonable access to anonymous testing throughout the state.

The Legislature returns from its summer recess on August 15^th and has four weeks to complete legislation before adjourning for the year.  If HIV name reporting is adopted  during that time, the AIDS Foundation will work closely with both the State Health & Human Services Agency and the State Office of AIDS to implement a system that protects the interests of Californians at risk for and diagnosed with HIV.