HIV Reporting by Coded Identifier is Proving Successful According to a New Report by the AIDS Foundation of Chicago

AIDS Advocates Reject Preliminary State Findings Suggesting the System Is Flawed

CHICAGO - According to a new report released today by the AIDS Foundation of Chicago (AFC), Illinois' trial HIV identifier system, which tracks HIV cases by code instead of name, is both meeting public health goals and performing better than systems in other states that track HIV by name.

According to the report, Illinois' trial system has established a better track record of collecting risk information on individual HIV case reports than the 34 other states that conduct HIV surveillance. Illinois collected risk information on 74% of all reported cases in the first six months of implementation, which is markedly higher than the national average of 59%. Most impressive is that Illinois is testing an innovative method of tracking HIV, by code instead of name, in order to protect individuals' privacy and promote HIV testing.

The report also details AFC's contention that the state is failing to ensure that local health departments conduct adequate and consistent epidemiological follow-up activities, which are required by state regulation as part of the trial system. According to AFC, inadequate follow-up with the physicians, medical centers, and testing sites that generate HIV case reports will hurt the system's evaluation next year, when state officials must decide whether to keep the current system or change to a name-based system.

"This system is demonstrating tremendous potential. It is helping us keep better track of new and emerging trends in the epidemic, while promoting HIV testing and protecting patients' privacy," said Mark Ishaug, AFC executive director. "We are calling on the state to revise its evaluation plans to ensure a meaningful and scientifically rigorous assessment of the system's implementation, operation, and effectiveness."

According to the AFC report, the state's evaluation of the system, scheduled to commence in January, will fail to factor in serious and, as of yet, unresolved problems with the system's implementation, operation, and trial design. Such an assessment could result in Illinois unfairly discounting the current system and switching to HIV reporting by name.

AFC's report, called "Promising Results: HIV Tracking by Unique Identifier In Illinois," contains recommendations for the state including (1) strengthening follow-up activities, (2) adjusting performance criteria to match federal recommendations for such systems, and (3) conducting two evaluations: one to determine if the system was implemented and operated as intended and another to measure its effectiveness.

The AIDS Foundation of Chicago also calls on the state to reconvene the advisory group that initially recommended the trial system in 1998. This group, made up of public health and medical experts as well as people living with HIV/AIDS, should review the system's progress to date and help the state health department determine next steps and evaluation activities.

"Illinois has a model HIV identifier system that works," Ishaug said. "We should be fine-tuning it and helping other states model their systems on ours. Instead, the state is dangerously close to scrapping more than three years of hard work, and changing to a method that could scare people at high-risk from seeking HIV testing."

Studies show that, because of persistent AIDS stigma and discrimination, individuals at high risk (particularly gay men and injection drug users) may avoid or delay HIV testing for fear of being identified as HIV-positive by name to the government.

The report "Promising Results: HIV Tracking by Unique Identifier In Illinois" is available on the AIDS Foundation of Chicago's HIV Surveillance page.

The AIDS Foundation of Chicago (AFC) is Illinois' principal advocate for people living with and at risk for HIV/AIDS. Established in 1985 to provide central leadership in the fight against the epidemic, AFC promotes sound HIV/AIDS public policy, funds HIV/AIDS care and prevention projects, and through its Service Providers Council, helps to coordinate the delivery of essential HIV/AIDS services.

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