CDC Urges States to Use Patient Names in Tracking HIV Cases

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Dec. 10, 1999 (Atlanta) -- In the latest step by the federal government to track the spread of HIV, the CDC has issued new guidelines urging states to collect data on HIV using either the names of patients who test positive for HIV or unique identifying codes.

The guidelines are aimed at aiding in the development of treatment and prevention programs. Testing sites would report HIV cases with patient names or identifying codes to state health departments, which would pass case data on to the CDC. The names or codes are removed before the cases are reported to the federal government.

The guidelines, which AIDS activists fear will discourage some people from getting tested, will mainly affect those who request an HIV test during visits to their doctor or when having lab work done that goes onto their medical record.

Thirty-four states already require the reporting of names of people with HIV. To prevent security breaches on the state and local levels, the CDC says that states may opt to have a double-keyed encryption program protected by an Assurance of Confidentiality under the Public Service Act.

Additionally, the CDC has consulted with the Georgetown/Johns Hopkins Public Health Law Project to help protect confidential information held by the states.

"We've developed a model statute that's now been reviewed by the Department of Health and Human Services," says Lawrence Gostin, JD, professor of law and public health at Georgetown Law Center. "And we're hoping the states will adopt it. At its core are civil and criminal penalties for security breaches of HIV surveillance information. Right now, many states don't have either. It's an important step for public health."

States have been reporting AIDS cases since 1981. However, since new treatment advances are helping to prevent HIV from becoming full-blown AIDS, the CDC began two years ago recommending that states track HIV cases as well.

The CDC recently conducted a three-year evaluation of reporting systems based on Social Security numbers in Maryland and Texas and concluded that name-based systems are more likely to meet its performance standards. Texas has since switched to a name-based system. However, the guidelines do allow for states to adopt code-based systems if preferred.

Washington, D.C., along with 11 states, currently uses an anonymous system but is considering the implementation of a code-based one.

"In making our decision, we consulted widely at the grassroots level, says Gregory McCarthy, policy director for the mayor's office. "It's hard for some people to accept that a name-based system can ever be truly confidential, and we didn't want to discourage HIV testing in any way. ... We're confident that we can improve on the unique identifier systems already in use [in Maryland]."

Regardless of which approach states adopt, the CDC recommends that anonymous testing remain available.

"Our research indicates that some high-risk individuals favor anonymous testing. And even if the numbers are small, they're critical for early treatment and preventing further spread of the disease," says Helene Gayle, MD, MPH, director of the National Center for HIV, STD, and TB Prevention at the CDC.

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