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States Will Move to Name-Based Tracking of HIV Patients This Year

Despite skepticism and outright resistance by HIV/AIDS advocacy groups and several state governments, it is likely that all 50 states will switch from a code-based system for tracking AIDS patients to a name-based system by year’s end. States refusing to change could lose millions of dollars of federal funding for HIV patients.

Part of the reauthorization of the Ryan White Comprehensive AIDS Resource Emergency (CARE) Act passed by the U.S. Congress in December 2006 (H.R. 6143), included the creation of new funding formulas that account for HIV prevalence. Mandatory name-based tracking is a component of the revised formulas. The U.S. Centers for Disease Control and Prevention, the main government agency responsible for tracking HIV infections, has favored name-based tracking since 1999. It made an official recommendation to adopt the system in 2005.

Since 2006, at least a dozen jurisdictions, including Massachusetts and Washington, DC, have balked at the change. A primary concern expressed by AIDS patient advocates was that name-based reporting would remove the privacy and anonymity that a code-based system offers. Some fear that this change could deter individuals from HIV testing and treatment. According to Catherine Hanssens, executive director of New York’s Center for HIV Law and Policy, name-based tracking “can affect if (disadvantaged people) come back for care and it can affect how they describe to other people their experience of getting tested.”

Questions have also been raised about the security of patient information kept in state health department databases. The names of 6,500 HIV and AIDS patients were inadvertently e-mailed to 800 county health workers in Palm Beach County, Florida, in 2005. Security breaches have also occurred in California and Kentucky. Conversely, several states have expressed confidence that proper measures have been taken by their health departments in recent years to tighten the security of this sensitive information.

A key compromise provision to H.R. 6143 allows states a four-year, penalty-free transition period to convert from the code-based method of reporting HIV cases to the name-based system. Vermont, Maryland and Hawaii are the few remaining states not yet tracking the names of HIV patients, but they are in the process of adopting name-based surveillance. Eight other states and Washington, DC, began collecting the names of HIV patients last year. Massachusetts made the switch in January 2007.

While some states expressed varying degrees of enthusiasm for the change, all ultimately must accept it or risk loss of funding. “I’ve not so much changed my opinion as surrendered,” said Ron Johnson, deputy executive director of AIDS Action in Washington, DC. “I still believe code-based reporting is valid and is preferable for HIV reporting. It, for all practical purposes, has become a losing battle,” he added.

Source: Chicago Sun Times, April 1, 2007


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