Should California Replace Code-Based HIV Reporting with a Name-Based System?

The names of people who have AIDS have been reported to the government since the earliest days of the epidemic. But for many years, states have debated whether and how to report individuals who are infected with HIV but do not have AIDS. The debate in California was renewed this year with the introduction of SB 945, legislation by State Senator Nell Soto (D-Pomona), which would replace California's current system of reporting individuals with HIV using a code with a system that would report individuals by name. Although SB 945 may not be approved by the State Legislature this year, similar legislation is likely to be taken up again in 2006.

In 1999, the U.S. Centers for Disease Control and Prevention (CDC) recommended that all states create HIV reporting systems. Although it preferred that the states operate name-based systems, the CDC guidelines clearly allowed states to decide what kind of reporting system they wished to operate. Since that time, however, the CDC has refused to accept data from the nine states--including California--that have opted to implement code-based systems.

Some HIV/AIDS organizations believe California should shift to names reporting immediately because of a risk that the state could lose federal AIDS funding if we do not make such a change. Ryan White CARE Act funding, the primary discretionary source of federal funds for HIV/AIDS care services, is currently distributed based on the estimated number of AIDS cases in each state. Congress is expected to reauthorize the CARE Act by September of this year. In so doing, it is likely to require that future CARE funds be distributed based on the combined number of AIDS and HIV cases. If the CDC refuses to accept code-based HIV data, California's CARE funding could be affected.

However, the San Francisco AIDS Foundation believes it is premature to conclude that California will lose money if it does not switch to name reporting. In reauthorizing the CARE Act, Congress will decide if states may continue to operate either name or code-based systems--a decision the CDC will presumably be required to honor. Assuming that HIV data is to be considered in distributing future CARE funds, the date by which that data will be included, and how it will be phased in, must also be decided by Congress. Additionally, hold-harmless provisions in the CARE Act could also protect California and its cities from reductions in funding.

The Foundation supports California's current code-based system, which is well-managed and reliable for purposes of tracking the epidemic and best serves the needs of our state. We have joined with the National Alliance of State & Territorial AIDS Directors in calling on Congress to uphold the right of the states to choose the HIV reporting system they deem most appropriate for their jurisdiction.

We remain concerned that a name-based reporting system would have a negative impact on the epidemic in California for three primary reasons. First, HIV reporting by name could prevent some Californians from seeking HIV testing. Past research on this issue has varied, but a recent study by the Center for AIDS Prevention Studies at the University of California San Francisco concluded that names reporting would deter a significant number of Californians who are at risk for HIV infection from being tested.

Second, while breaches of confidentiality have been very rare, significant harm could result for people whose identities are revealed. The recent example of a health worker in Florida who inadvertently emailed a list of 6,500 people with AIDS and HIV to 800 co-workers and an anonymous letter received by HIV-positive people referring to their serostatus in that state have done little to allay these concerns.

Finally, future political pressure could result in the use of names of HIV-positive individuals for purposes beyond tracking the epidemic. Some have suggested that this data should be used to trace sexual contacts or to prosecute HIV-positive individuals who engage in unprotected sex. Recently, the Comptroller of Maryland suggested posting the names of all people who test positive for HIV on the Internet. One need not have an overactive imagination to anticipate how the current political climate might fuel such proposals.

California has been a national leader in designing effective HIV programs while protecting the rights of individuals with HIV. The Foundation believes it best to maintain that leadership and that our state leaders, including the Governor and Legislature, should focus their attention and energies on urging the CDC to accept California's code-based HIV data.

Please feel free to contact us at 415-487-3099 if you would like additional information on the status of this issue as it is debated at the state and federal levels.