Thursday, October 21, 1999

Ky. opposed in plan to alter AIDS reporting

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ACLU concerned about privacy

BY SUSAN VELA
The Cincinnati Enquirer

        A Kentucky AIDS task force and the American Civil Liberties Union have squared off over a task force proposal to report the names of those who test positive for HIV, the virus that causes AIDS.

        Although a name-based system is used in 32 other states, including Ohio and Indiana, the proposal has stirred controversy in Kentucky.

        “The illness has such a stig ma,” said Jeff Vessels, executive director of the American Civil Liberties Union of Kentucky. “It's clearly understood that we have to maintain a careful balance between public health goals and privacy goals.”

        The ACLU says the proposed policy would be an invasion of privacy, would keep people from getting tested and deter them from seeking treatment because of fear their names will be revealed.

        Mr. Vessels, who contends that a name-based reporting system will drive the AIDS epidemic underground, also takes offense to the “scare tactics” used by the legislature's Task Force on HIV-AIDS Prevention, Services and Financing.

        He was referring to a task force report that contended the state would lose federal funding if it didn't switch to the name-based reporting. It turns out no funding is at risk, although the federal government has asked 18 states, including Kentucky, to keep better records of those infected with HIV.

        Ohio health officials say Mr. Vessels' fears are preposterous. The Centers for Disease and Control and Prevention (CDC) has also said name-based reporting is the most reliable system.

        “No way has this name reporting system forced the AIDS epidemic underground in Ohio. We think the system works very well,” said Jane Beathard, spokeswoman for the Ohio Department of Health.

        Now, Kentucky's positive HIV tests are identified with a code using a person's birth date and county of residence.

        Of the 18 states, some, like Kentucky, use such a “unique identifier.” Eight — including New York, Washington and California — have no reporting system at all.

        Indiana and Ohio have used names for reporting HIV cases for about a decade.

        Under the Kentucky system, there are challenges in identifying the person's race; his age when diagnosed with HIV; and how he was exposed to HIV.

        Mollie Adkins, one of Kentucky's three AIDS and HIV surveillance coordinators, said name-based reporting will make state public health records — to be submitted to the CDC — more reliable, ensuring that cases are not duplicated and that statistics are not inflated.

        Under the system being proposed, names would be maintained in a state database and not passed along to the CDC.

        Ms. Adkins said it will give Kentucky health officials a more accurate read on its HIV cases. It also promises to take care of the challenges that state health officials now face in getting more accurate information about race, age and means of exposure.

        The state, she said, could find that the HIV numbers are greater than officials now believe, which could result in Kentucky getting more funding. But, she said, funding will not be lost if Kentucky doesn't make the switch.

        Mr. Vessels has promised to fight the task force's policy. If it's approved, he promises to fight it at the General Assembly level, too.

        It was upon his advice that the task force agreed to hear Dr. Liza Solomon, the AIDS administration director for Maryland, where the legislature has voted against name-based reporting.

        Maryland now uses a “unique identifier” for HIV cases. The identifier is a 12-digit code that encompasses date of birth, race, gender and the last four digits of Social Security numbers. Texas has the same system.

        CDC, after a three-year evaluation of the two systems, said the codes often were incomplete, making it difficult to link the numbers to real people.

       

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