Thursday, 4:30 PM
Board votes that names of people with HIV must be reported to state
By Stephen Smith, Globe Staff
Starting Jan. 1, doctors in Massachusetts will be required to report the name of anyone testing positive for HIV to the state public health agency, regulators decided today.
The move, approved unanimously by the state Public Health Council, is part of a national campaign to more accurately chart the march of the epidemic so that prevention and treatment efforts are directed where the need is greatest. For more than two decades, doctors reporting HIV test results in Massachusetts have used codes rather than names to identify individual patients.
The state is promising to keep names confidential in secure computer files, but critics have expressed fears that the policy shift will dissuade some people from getting tested for the virus and warned that no record system is foolproof.
The change, which has been under study for a year and was first disclosed publically by The Boston Globe in April, emerges as federal health agencies ratchet up pressure on states to adopt uniform HIV reporting standards, including the collection of names. The stakes for failing to do that could be substantial: The federal government is making financial assistance for HIV patients contingent on states requiring reporting of names.
"We could lose as much as $15.1 million in the Commonwealth," said Sally Fogerty, an associate commissioner in the Department of Public Health. "We feel that the regulations incorporate the safeguards to address any concerns around confidentiality."
Only five other states have yet to mandate the reporting of names with HIV test results, Fogerty said, but, like Massachusetts, all five are moving toward such a policy.
In many respects, the adoption of names-based reporting reflects the changing landscape of HIV in the United States.
Advocates of the policy maintain that the stigma attached to the virus has diminished and with it, patients' fears about testing, especially with the passage of laws to shield the HIV-positive from workplace and housing discrimination.
The refined tracking system in Massachusetts would keep records about HIV cases within a closed computer network at the state laboratory in Jamaica Plain that could not be accessed through the Internet or via other internal computer systems in the state, said Dr. Alfred DeMaria, the state's director of communicable disease control.
Massachusetts already requires reporting by name for many other infectious diseases, such as syphilis and gonorrhea. And that policy has applied to patients with full-blown AIDS since the early days of the epidemic in the 1980s. Those infected with HIV but yet to develop AIDS are the lone exception to the infectious disease reporting requirement.
At one time, that was a distinction without any real meaning: AIDS progressed so rapidly that specialists believed counting AIDS cases was the most telling measure of the disease's movement. But the arrival of potent drug cocktails a decade ago profoundly altered the trajectory of HIV in the developed world, rendering a disease once regarded as a near-certain death sentence into a treatable chronic condition for many patients.
Stephen Smith can be reached at stsmith@globe.com.
