HIV/AIDS: CDC Rules Support Names-Based Reporting
The CDC issued new guidelines today instructing states to collect data on HIV cases with patient names or unique-identifier codes attached, stating that names-based reporting is the best way to ensure accurate data, the AP/Boston Globe reports. States have been reporting the number of AIDS cases by patients' names or identifying number since 1981, and in 1997, the CDC requested that states begin keeping records for those people testing positive for HIV. Under the new guidelines, released in this week's Morbidity and Mortality Weekly Report, testing sites would report people with HIV to state health departments by either their name or a unique identifier code. In turn, the health department would report the number of cases to the CDC, withholding any identifying information from the federal agency. The guidelines make HIV reporting a requirement to receive federal funding for the surveillance (Bynum, AP/Boston Globe, 12/10). Currently, 34 states use names-based reporting for HIV cases, while California, New York and Pennsylvania have yet to implement either system. Although the CDC guidelines note that name based reporting is the "best way to get high-quality data," the agency said that to provide states with some degree of flexibility, it will allow states to use a unique identifier system for the next few years. But after that deadline, if states fail to meet the CDC's surveillance system performance standards, funding will be denied (McGinley, Wall Street Journal, 12/10).
Covering the Bases
According to the CDC, studies of Maryland's and Texas' unique identifier reporting systems found several problems, including incomplete codes and incomplete information. In addition, the systems presented significant hurdles to follow-up in specific cases. These and other studies "have failed to identify a code that performs as well as names-based methods," the CDC concluded (CDC release, 12/9). The guidelines note that the expanded "surveillance will provide additional data about HIV-infected populations to enhance ... efforts to prevent HIV transmission, improve allocation of resources for treatment services and assist in evaluating the impact of public health initiatives" (MMWR, 9/10 issue). To allay concerns about confidentiality breaches, the CDC recommended using a double- keyed encryption program that would only allow access to the information with both the state's and the CDC's password. The CDC also recommended that misusing the information be classified as a federal offense (CDC release, 12/9).
Originally proposed last year, the names-based reporting system has alarmed some AIDS activists, who fear that it will act as a deterrent for people who want to be tested. Daniel Zingale, executive director of AIDS Action, said, "I see a disincentive to undergo HIV testing as a problem. Anything that's keeping people away from knowing their HIV status is a bad idea unless there's a compelling reason to do it" (AP/Boston Globe, 12/10). Ronald Johnson of the Gay Men's Health Crisis concurred. Calling the guidelines "counterproductive," Johnson said, "We continue to be disappointed in the guidelines in the degree to which they put an overreliance on a names-based reporting system" (McGinley, Wall Street Journal, 12/10). However, Dr. Ronald Valdiserri, deputy director of the CDC's center for HIV prevention, argued that names-based reporting was the best way to compile complete, accurate information. "There tends to be less frequent duplication," Valdiserri said (AP/Boston Globe, 12/10).