• REPORTS CASES OF HIV AND AIDS BY NAME
• STATES NOT OFFERING ANONYMOUS TESTING
• REPORTS CASES OF PEDIATRIC HIV AND AIDS BY NAME
• STATES THAT HAVE ENACTED HIV/AIDS-SPECIFIC PARTNER NOTIFICATION LAWS
• REPORTS CASES OF HIV AND AIDS BY UNIQUE IDENTIFIERS
• STATES THAT HAVE ENACTED CRIMINAL HIV TRANSMISSION AND EXPOSURE LAWS

Until recently, the Centers for Disease Control and Prevention (CDC) primarily gathered surveillance data on AIDS cases and deaths, but now in the protease era, it's added HIV infection status to the list. The shift reflects the progress made with new therapies, which are helping people to stay healthy. Although health officials agree that better data is needed to track the epidemic and prevent its spread, the question is what model provides the best data, while insuring confidentiality. Critics warn that such information has been used to further discriminate against HIV-positive individuals.

The CDC recently released new suveillance guidelines that states should follow, and federal funding for HIV and AIDS surveillance programs may be contingent on how well states implement them. The agency has recommended that states employ a standard set of surveillance data for all HIV and AIDS cases. As of December, most states had either complied with the new regulations or were hastily trying to do so (see map).

Three surveillance models exist for HIV/AIDS: name-based reporting, non-name-based reporting or "unique identifiers" (which uses a coded system to protect a person's identity), and anonymous testing. But increasingly, the trend has been toward name-based reporting. Under this system, the names of indviduals who test positive for HIV must be reported to the state Department of Health, along with other demographic identifiers. In most name-based-reporting states, anonymous testing is an option.

While the CDC guidelines don't directly favor any model, they state that name-based reporting is most likely to be more efficient and accurate than other systems. The CDC guidelines also urge states to provide anonymous testing, so as not to deter people from getting tested or seeking treatment. But that's exactly what opponents of name-based reporting fear. "There have been attempts in the past, and I have no doubts that there will be attempts in the future, to link databases in order to criminalize people with HIV/AIDS,” says Eileen Hansen, public policy director at AIDS Legal Referral Panel in San Francisco. "It’s this discrimination—both real and perceived—that will keep people from coming forward to get testing and treatment if we have name-based reporting." Currently, the CDC estimates that two-thirds of those infected in the United States know their status; globally, UNAIDS puts that figure at 5 percent.

Critics also worry that it will cost states millions of dollars to implement the new guidelines which will take money away from already limited budgets for treatment, research and prevention. New York’s program, for example, will cost an estimated $7 million, according to the state’s Department of Health.

Nor are critics convinced the model really works. Weighing in, the World Health Organization says there is no evidence that case-reporting prevents further spread of disease or facilitates entry into care.

To counter public concerns around HIV surveillance, the CDC has sponsored the Model State Public Health Privacy Act, which suggests ways in which states can address privacy and security issues arising from the acquisition of protected health information. But adoption of the model act is only recommended, not required. Hear that, Orwell?

—Cindra Feuer