Tracking HIV Positive Patients Feds force Oregon to report names. BY MELISSA BEARNS Starting in late March and early April, all health care providers and lab technicians in Oregon will be required to report the names of people who test positive for HIV to the Oregon Department of Health and Human Services (DHS). The DHS will then use that information to give the feds an accurate count of HIV cases in Oregon. But DHS won't be reporting names. Unless the state switches from the current system, in which the names of HIV positive patients are converted to a unique code after 90 days, the state will lose $3 million to $4 million dollars in federal funding. Currently Oregon spends approximately $8,500 for every patient who tests HIV positive or has AIDS. That money helps cover the costs of medical care and other treatment. Most of the funding comes from the federal Ryan White CARE Act, and Congress is in the process of re-authorizing funding for the act. Under the Ryan White CARE Act, the amount of funding a state gets is determined by the number of people who are HIV positive and living with AIDS. With Oregon's current system, it can be hard to accurately track the number of HIV positive people in the state because the codes are not unique identifiers. In other words, the same person could be counted multiple times. "What the CDC [Center for Disease Control] is telling us, is 'We won't accept your count the way you have been doing it," said Renee Yandel, client services director for HIV Alliance in Eugene. "So either do it our way or you're going to lose millions of dollars." Last Tuesday DHS held a public hearing in Eugene on the proposed changes. Two people, both from HIV Alliance, testified and raised concerns about privacy. According to Yandel, the biggest concerns HIV Alliance employees have with name reporting is that it could deter people from getting tested at all. "What I think about is you're thinking you're positive, and already you have to start thinking about who's going to have that information; what's the discrimination you're going to face; what if your landlord finds out; what if you employer finds out, and all that stuff," she said. "Then you have to worry about, well, the state already has my name." But one of the key provisions of the new law as Oregon switches to named reporting is that anonymous testing will still be available in the state. "I think if we can preserve the option of anonymous testing then one of the greatest concerns has already been answered," said Betsy Meredith, nursing supervisor at Lane County Public Health. But anonymous testing will not protect the identity of someone who tests positive for HIV if that person seeks additional medical care. Once a person tests positive, additional testing is needed to determine what the virus is doing and how far advanced the disease is. At that point, even if the patient went to a private doctor, that doctor will be required by law to report the patient's name to the state. "Even your private doctor is not your private doctor," Yandel said. Laboratories are also required to report HIV positive tests and additional testing to the state. Medical Epidemiologist in the HIV Program of Oregon State Public Health Sean Schafer pointed that "there is a long list of diseases doctors are required to report including plague, polio, meningococcal disease and many others. What we do with that information is everything you would expect everything a responsible health organization to do. We investigate outbreaks of disease and that's how we find out things like, as was the case a few years back, that the hamburgers at a particular fast food restaurant are making people sick." "This doesn't just come out of the blue," he said. "Case reporting by name has been around for a long time." Oregon started keeping track of the names of people who tested positive for HIV in October of 2001. But under the current system, the names are converted to a code after 90 days. State officials are adamant in pointing out that there have been no breaches in confidentiality under the current system. In addition, the names are not reported to the CDC. "That's a very important distinction a lot of people don't realize," Schafer said. The name reporting will start at the end of March or in early April.
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