State official says change in HIV/AIDS registry working

It's been nearly a year since state health officials, under a federal mandate, began keeping data on HIV and AIDS patients by name, rather than assigning a code number; but the privacy of patients continues to be preserved, a state official said. Montana had an elaborate system to shield the identities of the nearly 500 HIV and AIDS patients in the state, but the Centers for Disease Control and Prevention in Atlanta ordered states to begin tracking HIV and AIDS patients by name by the end of 2007, or risk losing federal funds.

Montana has always kept records of the names of HIV and AIDS patients, but prior to September 2006, it assigned everyone a code number, said Laurie Kops, section supervisor of the state's HIV prevention and surveillance division. But the code system, also used in other states, proved to be an unreliable way to track cases, and it skewed national data kept by the CDC. "There has been a lot of duplication in the numbers," Kops told the Bozeman Daily Chronicle.

So, the CDC last year required that states drop or modify the code system in favor of one that tracks individuals by name and other data.

Failure to comply could have meant the loss of a significant chunk of the $2.1 million in federal funds for HIV/AIDS programs in Montana.

"In trying to make sure we report the true numbers of cases, this is one of the best ways to accomplish that," Kops said.

She stressed that patients' names and personal data are never given to the CDC, only summary data on the number of cases.

"When there is a report to CDC, it's only by the numbers, and not by name," Kops said.

"That seems to be people's greatest fear, that their information will be released by name. But it's always been by the number, and always will be by the number."

While the shift to name-based tracking might have caused quite a stir 10 years ago, it seems to have caused few ripples.

"A lot of preparation work and

education was done up front," Kops said.

"We worked with a lot of groups who initially had concerns, but the bottom line was this had to be done or we would lose our funding."

(source : billingsgazette.net)