Bay Area Reporter Guest Opinion Piece May 2005

One of the most debated questions over the course of the AIDS epidemic has been whether the government should require the reporting of HIV infections by name to public health authorities. This debate has been re-kindled with the introduction of a bill in the California Legislature--SB 945 by Senator Nell Soto (D-Pomona)--that would replace code-based HIV reporting with HIV reporting by name. This bill has been approved by the Senate Health Committee and will move to the Senate Judiciary Committee on May 3. The San Francisco AIDS Foundation is opposing this legislation. We continue to believe that code-based HIV reporting strikes the appropriate balance between the legitimate public health needs of tracking the epidemic with those of protecting the confidentiality of people with HIV and not erecting new barriers to HIV testing.

A bit of history and background is needed to understand this increasingly complex issue. While AIDS cases have been reported from nearly the start of the epidemic, states have taken very different approaches to the reporting of HIV infections. Many states, including California, have resisted HIV name reporting out of concern for the confidentiality of people with HIV and the possibility that some people will be deterred from seeking HIV testing if they know their names may be reported to the government.

As effective HIV treatments became available and individuals began living longer without progressing to AIDS, a consensus emerged among HIV advocates, policy makers and public health experts that HIV reporting was needed to better track the epidemic and plan for needed services. The debate then shifted to whether HIV-positive people should be reported to the government using their names or using a unique code that would provide information about HIV infection trends without turning over names to the government. After several years of debate, California decided in 2002 to report HIV cases using a unique code rather than names.

The impetus for SB 945 and the proposal to abandon California's code-based reporting system stems from the U.S. Centers for Disease Control and Prevention (CDC). In 1999, the CDC recommended that all states implement 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, as long as those systems met performance criteria outlined by the CDC. Since that time, however, the CDC has refused to accept any of this code-based data from the nine states -- including California -- that have opted for this type of reporting system.

Supporters of SB 945 argue that California should shift to names reporting immediately because California could risk losing federal AIDS dollars as a result of the CDC's position. Allocation of Ryan White CARE Act dollars--which provides funding for critical medical, treatment and support services for low-income Americans living with HIV/AIDS--is currently based on an estimate of the number of people living with AIDS in a given state or locality. The CARE Act is up for reauthorization by Congress this year and some changes under discussion would tie the allocation of future CARE funds to the combined number of AIDS and HIV cases. If this was to occur and the CDC continues to refuse data from code-based states, this change could disadvantage those states in future distributions of CARE funds.

In our opinion, it is premature to give up this principled fight. The reality is that Congress has the ultimate power to decide if states may continue to choose between name or code-based systems, and it is unlikely to make that decision until much later this year. If HIV data is to be included in distribution formulas, the timeframe for when such data will be included, and how it will be phased in, also must be decided by Congress during this process. Congress will also decide the extent to which individual states or localities might be protected from reductions in their CARE Act funding. All of these factors could alter the extent to which California's AIDS funding is affected and what, if any, impact that should have on our HIV reporting system.

Based on this current landscape, the San Francisco AIDS Foundation opposes any changes to California's current code-bases system and instead joins with the National Association 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 continue to believe that a code-based system best serves the interests of people living with and at risk for HIV in California, providing needed information on the epidemic without the potential negative consequences that might follow from a name-based approach. There are three primary reasons for our position.

First, we remain concerned that HIV reporting by name could cause some Californians to avoid being tested for HIV altogether. 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 name reporting would deter a significant number of Californians who are at risk for HIV infection from being tested. Why risk this prospect if an effective reporting system is available that minimizes individuals' fear about potential loss of confidentiality?

Second, while existing AIDS and HIV reporting systems have proven to be confidential and breaches have been rare, many individuals at risk for HIV remain concerned that information about their HIV status could be disclosed. 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 does little to allay these concerns. Because Florida uses a names-based reporting system, the names of people with HIV and AIDS found their way into unauthorized hands. A code-based system like that operated in California would have made that impossible.

Our third concern about HIV name reporting is that future political pressure could result in the use of names of HIV-positive individuals for purposes well 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 in Maryland suggested posting the names of all people who test positive for HIV on the Internet. One need not have too much of an imagination to wonder where the current political climate might take these proposals. A code-based system provides a valuable safeguard against these prospects.

California has been a national leader in designing effective HIV programs while protecting the rights of individuals with HIV. This is time to maintain that leadership -- not a time to succumb to unreasonable demands of the CDC that ignore the fact that code-based HIV reporting is fully consistent with public health needs to track HIV. The hard-fought battle to create an effective code-based system of HIV reporting in California that avoids unnecessary deterrents to HIV testing should not be abandoned prematurely.