By Stephen Smith
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The Boston Globe
State requires doctors to identify HIV patients
By Stephen Smith, Globe Staff | November 15, 2006
Starting Jan. 1, Massachusetts doctors will be required
to provide the state with the name of anyone testing
positive for HIV, regulators decided yesterday.
Proponents of the move, approved unanimously by the
state Public Health Council, say such reporting is a
critical component of a national campaign to more
precisely chart the AIDS epidemic, so that prevention
and treatment efforts can be directed where the need is
greatest. Doctors in Massachusetts now use codes rather
than names to identify cases.
The state is promising to keep identities confidential
in secure computer files, but critics have expressed
fear that the new policy will dissuade some people from
getting tested for the virus and that no record system
is foolproof.
The change, which has been under study for a year and
was first reported by the Globe in April, emerges as
federal health agencies increase 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 the
reporting of names, and federal officials said the
change is necessary to slow the rate of new infections.
"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,
and, like Massachusetts, all five are moving toward
such a policy.
Jean McGuire, former chief of the state's HIV-AIDS
Bureau, characterized the federal government's
arm-twisting as "most unfortunate" and said the state's
, system provides sufficient information.
"I felt that if we had the ability to collect good data
and not have a name, why not do it that way?" said
McGuire, now a visiting professor at Northeastern
University. "We proved our ability to do that."
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, as have patients'
fears about testing, especially with the passage of
laws to shield people with HIV from workplace and
housing discrimination. Also, the arrival of potent
drug cocktails a decade ago rendered a disease once
regarded as almost a death sentence into a treatable
chronic condition for US patients.
Proponents of the requirement say that it's important
to have a standard practice for tracking HIV cases,
rather than a patchwork of state-by-state policies.
Standardization allows for speedy recognition of
problem areas and fair distribution of federal aid.
The refined tracking system in Massachusetts will keep
records about HIV cases within a closed computer
network at the state laboratory in Jamaica Plain that
cannot be reached through the Internet or via other
internal computer systems in the state, said Dr. Alfred
DeMaria, state director of communicable disease
control.
Massachusetts already requires reporting by name for
many other infectious diseases, such as syphilis and
gonorrhea.
Those infected with HIV but who do not have AIDS are
the lone exception to the infectious-disease reporting
requirement. That was a reflection of the earliest days
of the epidemic, when AIDS progressed so rapidly that
specialists believed that counting AIDS cases was the
most telling measure of the disease's movement.
Stephen Smith can be reached at stsmith@globe.com
stsmith at globe.com
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