Massachusetts removes veil of anonymity in HIV screening
Abandoning its 20-year-old policy of using code to store data on HIV/AIDS patients, Massachusetts will require the names of anyone testing positive for HIV to be reported to the state public health agency, starting in January.
The decision Tuesday by the state Public Health Council makes Massachusetts a part of a national trend toward name-based reporting of HIV/AIDS cases. The move also allows the state to receive federal AIDS funds that are contingent upon recording names, as part of a broad national effort to track the epidemic and its treatment.
“This is a forced choice,” said Jean McGuire, a former assistant commissioner of health in Massachusetts, who also was formerly the head of the state-run HIV/AIDS bureau here. Current state health officials could not be reached for comment.
McGuire, a professor of public health at Northeastern University, said the state previously had maintained confidentiality of HIV/AIDS patient records through a complex coding system.
She said the state agency was compelled to shift to name-based reporting because the U.S. Centers for Disease Control and Prevention demanded uniform criteria. More than 40 states, including California, require HIV reporting by name.
Current drug protocols allow many HIV/AIDS patients to live with the disease for many years, and McGuire said many people were worried about stigmatization and the possibility of unwanted disclosure if their names were listed in government databanks.
“I think this is an unfortunate decision,” she said. “For me, there has always been an overriding concern about the fact that we are constantly and consistently expanding the personally identifying data that the government has.”
But a spokesman for the San Francisco AIDS Foundation said named-based reporting is “good public health.”
Redge Norton, the foundation’s media relations manager, said Tuesday that “routinizing and universalizing HIV testing and information helps people get into care. Twenty-five years into the epidemic, it makes sense. Being HIV-positive does not have to be a death sentence.”
Norton said California and other states that practice name-based reporting had built informational firewalls to help protect confidentiality.
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