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?
"The patient then sues, saying that two years ago the doctor failed to make the correct diagnosis. If the records are destroyed, how can we arrive at the truth?"
And there are other reasons, Muth says, not to destroy the records. He cites an actual case in which a patient tested negative for HIV in 1989 and again in 1990 but positive in 1993. The tests gave health workers a bracket of time to establish when the patient contracted the virus--an important fact for both tracking the disease as well as contacting other people who may have been exposed.
Another example, says Muth, is the unlikely, but possible, event of a laboratory error giving a wrong initial diagnosis. Such lab errors may not be detected for some time, Muth says, but without a record of who might have been misinformed, there is no chance of correcting the mistake.
However, Muth's arguments don't sit well with those who view anything and anyone from the Colorado Springs area with distrust--despite protections that make it nearly impossible for the records to get into the wrong hands. HIV test results are considered public health records rather than medical records under the law, meaning they can't be subpoenaed or released--even to the affected individual. Release of the information is a misdemeanor punishable by a fine of up to $5,000 and two years in jail.
Nevertheless, activists fear that a change in public health policy or law could result in the records becoming public. "After all, this is the state that passed Amendment 2," says Pirtle. "Anything that comes out of Colorado Springs, rightly or wrongly, is going to be looked at with fear and concern."
Pirtle and other activists have voiced concern that Muth will speak at the Governor's AIDS Council not against the record-destruction policy but instead about changing the policy of de-linking the names from the risk categories. Muth denies it.
Dan Kardokis, gay activist in Denver, says it's not the first time that El Paso County health officials have opposed changes in policy that protect the privacy of people tested for HIV. But activists in the Springs paint a different picture of Muth.
Conservatives in the Springs have challenged Muth's department on several issues, ranging from sex education in the schools to outreach programs to the gay community.
"There isn't a day that I don't tangle with the CFV over some issue," Muth says. "So I understand where the fear comes from."
Gay and AIDS activists in Colorado Springs say Muth and his associates have an excellent working relationship with them, even if they don't always agree on every issue.
"If Dr. Muth was going to come down on one side of the fence or the other, he would come down on our side, not the fundamentalists'," says Jeff Milligan, the program coordinator for the Southern Colorado AIDS Project, who is gay. "But he doesn't come at you from a moral point of view. He's a scientist, and he tries to look at this as a scientist. He comes across as a sort of old-style country doctor, but he's very pragmatic."
Muth, who came to the El Paso department fourteen years ago after retiring from the federal public health system, says his concern with the politicizing of AIDS is that incorrect data can be used by anyone with an agenda.
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"It can be used to say that this is all gays' fault, when it's not," he says. "Or funding may go into areas where it isn't needed as much."
The Governor's AIDS Council is expected to recommend a policy to the Board of Health. The Department of Public Health has proposed a compromise in which a person being tested can declare on the consent form whether his or her test result should be destroyed after two years.
But that, Muth notes, would leave the decision to the individual--someone who may not understand the importance of the records to themselves or the public.
"It just doesn't make sense," he says, "to destroy records.