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California Considering Switching From Coded HIV Reporting System to Names-Based Reporting Because of Inefficiencies

July 26, 2005

California's HIV reporting system -- which relies on codes rather than names to protect patient privacy -- has become a "bureaucratic morass," and even people who originally favored coded reporting now are supporting a switch to names-based reporting, the Los Angeles Times reports. After years of "contentious debate" surrounding patient privacy issues, California three years ago started reporting HIV cases to the federal government using alphanumeric codes that incorporate a patient's birthdate, gender and elements of their last name. Under the system, laboratories and doctors report to their county's health department the codes for anyone who tests HIV-positive. The county health departments then send the information to the state, which then reports the information to the federal government. However, the system -- which the state uses only for HIV case reporting -- is failing, as "[c]ountless cases are believed to be lost in the system" because doctors and laboratories often send incorrect or incomplete codes or fail to keep required patient data, according to the Times. As a result, state health authorities are having difficulty gauging the HIV epidemic in the state and allocating appropriate funding to counties. Coded reporting also has complicated the state's elimination of duplicative reports, the association of HIV cases with reports of other diseases, follow-up with patients and the notification of sexual partners of those who test HIV-positive. Moreover, CDC does not consider coded HIV reporting to be accurate enough, and federal officials have said they soon will withhold funds from states that use code-based reporting rather than confidential names-based reporting, which the state uses when reporting its AIDS cases. California -- which is one of only seven states and the District of Columbia that uses coded reporting for HIV cases -- could lose as much as $50 million annually in federal HIV/AIDS funds if it does not switch systems, the Times reports (Ornstein, Los Angeles Times, 7/25).

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