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Fatal Secrets

HIV/AIDS Activists Demand Anonymity

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ON TUESDAY, a purple and black, 15-foot papier-mâché man loomed in front of the Northeast State Office Building; around his neck was a hand-painted sign that read, "Dr. HIV." He and roughly 35 flesh-and-blood people stood chanting, "no names, no nombres," for an hour, while confused businessmen navigated their way through the crowd.

Triggered by a pending change in Oregon state law, the protest was trying to halt a change in the state health's administrative rules: if enacted, doctors would be required to submit the names of HIV-positive patients to the Oregon Health Department.

Activists worry that requiring a name would terrify people into never being tested. Moreover, if HIV-positive patients were to come forward, warn activists, they would risk their chances for receiving health care and insurance.

"If we require doctors to submit those names," explained HIV/ AIDS community activist Steve Hensen, "Oregon's most vulnerable populations stand to become even more at risk."

Hensen is supported by approximately 10 other AIDS specialists and community activists--including the head organizer of the protest, Jack Cox--in an effort to thwart the new administrative rule. The group believes that even though confidentiality is guaranteed by the state under the pending change, the chances of a breach in anonymity are simply too great to risk.

Activists site horror stories in other states' records. A flyer they distributed at the protest read, "In 1987 one man in Florida went so far as to steal a list from public health, use that list to check his potential date's HIV status and even took it to a bar to offer the list to his friends. Other states have lost lists or had lists stolen. Some states even broadcast names of people with HIV over police radio." Oregon has allegedly flirted with similar disasters; Hensen describes a rumored occasion several years ago, when a health practitioner and a nurse were overheard in a rural Oregon community discussing the names of AIDS patients at a well-known restaurant.

Low-income minority groups are particularly vulnerable, say protesters. "If low-income and minority groups are forced to use their names, they will be too scared to get tested. People will wait until they are too sick, and more people will die," yelled one protester.

They point to the alternative systems currently used in California, Illinois, Maryland, and Massachusetts, where tracking systems attach a number to the patient, allowing them to remain anonymous while being tested and receiving health care.

The protest comes after exhaustive wrestling with state officials. For three years, Cox and other activists sat on an advisory group to the Oregon Public Health Advisory Board (OPHAB). When asked to make a recommendation to the state's administrative board regarding names reporting, the activists trusted the OPHAB's liaison between state and community, Dr. Mark Loveless (director of HIV/AIDS department of the Oregon Health Department), to correctly represent their opinion.

Yet, Cox and Hensen argue that Loveless grossly misrepresented their recommendation, leading to a 5 to 4 vote by OPHAB to proceed with names reporting.

In a letter to Governor Kitzhaber sent in late September, the non-state employees who sat on the committee with Loveless wrote: "We believe that OPHAB would have a different outcome regarding names reporting if OPHAB had been informed of our strong, well-informed conviction that names reporting will not serve well the need of Oregonians."

Loveless and other advocates of the Health Department's change to the administrative rules argue that money spent on implementing unique identifiers is money taken from direct patient care. "The system like that of Maryland would cost us approximately $3 million annually," explained Loveless. "That's money taken directly from AIDS patients' health." Loveless argues that names reporting is necessary to aid efficient research, treatment, and tracking of AIDS.

"I just don't believe that money is the issue here," responds Hensen. "It's cheaper, but it's also just easier for the state." The change is pending two public hearings in the next month.

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