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CDC Names Reporting Recommendation Taints HIV Tracking Plan

December 10, 1998

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Washington, D.C. -- While supporting the broad HIV surveillance goals announced today by the Centers for Disease Control and Prevention, AIDS Action expressed concern about recommendations in the CDC plan that states adopt names reporting methods rather than non-name coded reporting.

AIDS Action opposes names reporting as a testing disincentive for at-risk individuals. AIDS Action is also concerned that the federal government is making this proposal without a parallel plan to ensure adequate access to health care.

"HIV names reporting is an oxymoron; by discouraging testing, it won't produce the names that such a system depends upon for success," said Steven Fisher, AIDS Action Communications Director. "Without better access to health care, names reporting is the Titanic all over again -- we're creating passenger lists without providing enough lifeboats."

In an attempt to better track the HIV/AIDS epidemic, the CDC announced rules Thursday requiring all states to adopt HIV reporting systems, in which state health authorities would collect the name or coded identifier of everyone who tests HIV positive. AIDS Action supports state HIV reporting systems that use codes rather than individuals' names. Current federal rules only require those with full-blown AIDS to be reported to all states.

AIDS Action is concerned that HIV names reporting systems -- currently in place in 30 states -- discourage already hard-to-reach at-risk individuals from getting tested so they can get treatment and counseling to protect their own health and the health of others. Of the 700,000 estimated HIV-positive Americans, as many as 300,000 may be unaware of their status.

"AIDS Action believes that individuals at risk for HIV infection should be tested often, voluntarily and confidentially," added Fisher. "Names reporting contradicts the strong movement toward better medical privacy in America."

AIDS Action strongly supports efforts to provide better treatment for those who are HIV positive. Under current Medicaid rules, low-income HIV-positive Americans don't qualify for access to benefits, including AIDS-preventing drugs, until they develop full-blown AIDS. AIDS Action is working to enact its Reinventing Medicaid proposal that would ensure that all HIV-infected individuals get access to drug treatment and medical care before AIDS sets in, not after.

"Before we consider reporting in the name of treatment, we must first ensure treatment for those who know they're infected," added Fisher. "It is a national tragedy that low-income HIV-positive individuals don't qualify for Medicaid until they develop AIDS."

Click to view the state-by-state chart of HIV reporting systems

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