A Balance for AIDS Reporting

Since the outbreak of AIDS 17 years ago U.S. doctors have not been required to report HIV cases to county health officials as they must do with other highly infectious diseases, like syphilis and tuberculosis. This “AIDS exceptionalism,” however, is coming to an end as epidemiologists urge states to develop HIV reporting systems.

Noting that HIV has been rising among the poor, women and African Americans even as it declines in the overall population, public health officials have come to see HIV reports as crucial to lowering transmission rates.

States are divided, however, on the issue of privacy, specifically over how doctors should report HIV cases: using patient names or anonymous number codes called “unique identifiers.” Thirty-two states require reporting by name, while about a half-dozen others, including California, are developing codes.

Last week, the state Legislature approved a bill by Assemblywoman Carole Migden (D-San Francisco) that would implement a coded system. Gov. Pete Wilson should sign the legislation, recognizing that it strikes the best balance between patients’ privacy concerns and public health officials’ need to gather as much data as possible.

Proponents of names-based reporting correctly point out that it delivers data more accurately and efficiently than codes. Names-based systems are less prone to errors (like reporting the same person twice) and cheaper to implement because they are already being used to track other diseases.

Advocates of names-based reporting suggest that the state’s need to protect citizens from disease should trump HIV carriers’ concern about privacy rights. The state, however, cannot protect its citizens unless HIV carriers get tested, and Migden’s coded system would prompt far more people to do that. Studies have shown that because of the stigma and discrimination linked to AIDS, many people refuse to be tested if they believe their names could end up on a government list. In a 1995 survey at HIV testing centers in Los Angeles, for instance, 86% said they would not have been tested if they knew that their names could be reported.

In the world of statistics, names-based reporting may be superior to a code-based system. But in the real world, codes are health officials’ best hope of gathering HIV data.