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To AIDS activists in Denver, the reaction from Colorado Springs was typical: The only county health director in the state to object to a particular policy on AIDS testing that they support was the guy down in--where else?--conservative El Paso County.
Coming from the home of Colorado for Family Values and Amendment 2, Dr. John Muth says he understands the suspicions that he might be biased against the gay community. But he says they're unwarranted--and AIDS activists from the Springs back him up.
The sniping at Muth is part of a larger AIDS controversy that's about to erupt in Denver. At issue is a Colorado Department of Public Health and Environment policy that the medical records of people who test negative for the AIDS-causing human immunodeficiency virus, HIV, be destroyed after two years. On August 1, Muth will speak against the policy at the Governor's AIDS Council meeting.
Actually, the policy isn't new. But because of an oversight at the state health department, county health departments--which contract with the state to do the testing in their areas--say they were unaware of it.
About two years ago, AIDS activists convinced the state Board of Health to "de-link" the names of people who tested negative for the virus from the extensive and personal information required to determine what "risk" category the tested person falls into. Such information would include whether the person was gay, or used drugs intravenously, or paid for sex from prostitutes--all considered high-risk behavior for contracting HIV.
Federal law mandates that the names of anyone with AIDS be reported to state health departments. Colorado is also one of more than twenty states that require the reporting of names of people who test positive for HIV. But it came as a surprise to AIDS activists and the gay community that health officials were also keeping the names and risk-factor information for people who tested negative, says Katie Pirtle, public-relations director for the Colorado AIDS Project.
"That would mean that all this very personal information was being kept on literally tens of thousands of people," says Pirtle.
Activists don't like the idea of keeping the names of people who tested positive for HIV, much less those who tested negative. "Once infected, people can remain healthy a very long time," says Pirtle. "The concern was: What if these names somehow got out? Would these people lose their insurance, their jobs?
"We have no reason to believe that there has ever been such a slip. But a diagnosis of HIV can be devastating socially as well as medically."
Unable to convince the Board of Health to drop the HIV-positive names, activists did convince the board to de-link the names from the risk-behavior data after 120 days. What local health officials thought they were left: a name and whether the person tested positive or negative.
Even most AIDS activists agree that there are valid reasons for public health officials to want to keep the personal information to help track the disease. But opposition to the de-linking plan came from only one source: the El Paso County health department, represented by Muth.
"It is important when following an epidemic to know whether the spread of the illness remains confined to certain pathways," Muth says. "In the beginning, AIDS was thought to be, and even labeled as such, a gay disease. But that wasn't really accurate.
"Although it spread rapidly through that community, the information we were able to gather showed that it was spread through certain kinds of behavior--whether a person was gay or not."
Associating a name with the behavior was important, Muth says, because not everyone who comes in for testing is honest about whether they fall into a particular risk category. For instance, people at first may deny being gay or that they engage in anal intercourse as a heterosexual but at a later time admit to a type of risk behavior. Without the prior medical records, epidemiologists would not be able to correct the data.
However, the opposition was determined, and Muth had to concede that most people give accurate information initially. "It did not make good health policy sense," says Muth. "But we decided to go along with it; it wasn't worth the fight."
Muth and other local health officials say they weren't aware of another change in policy required by the state health board: That after two years, the names of those who test negative also must be expunged from the records.
The confusion was caused by an "oversight" by the state health department, says Mary Kay Myers, program manager for the department's disease control section. The change in policy was not attached to the contracts sent to the counties in 1993. But it was included in a policy statement attached to the 1994 contracts sent to the local health departments in the spring. That's when Muth and others noticed the record-destruction clause.
"In essence, we were being told to treat the medical records regarding HIV differently than any other medical record in the world," says Muth. His biggest concern with this change, he adds, is medical liability.
Muth uses breast cancer to illustrate his point: "What if a patient went to her doctor two years ago for a mammogram and it is read as negative--but two years later she gets another mammogram and this time a cancer is detected?