Illinois Will Begin Name-Based HIV Reporting in 2006

SPRINGFIELD, IL (October 19)—Dr. Eric Whitaker, director of the Illinois Department of Public Health (IDPH), announced today at the statewide HIV/STD Conference that Illinois will begin tracking cases of HIV by name rather than alphanumeric code beginning January 2006 in response to mounting federal pressure to bring its HIV surveillance system in line with those operating in most other states.

Despite its longstanding advocacy for non-name-based reporting, the AIDS Foundation of Chicago (AFC) supports IDPH’s decision in order to preserve the integrity of HIV care, prevention, and housing systems across the state.

“The federal government has made the decision rather simple: switch to name-based reporting or lose millions of dollars for essential HIV care, prevention, and housing programs,” said Mark Ishaug, AFC executive director. “IDPH is facing this new challenge responsibly by bringing together stakeholders to ensure that every effort is made to protect client confidentiality and promote acceptance of HIV testing and care services.”

AFC has agreed to serve on a task force convened by IDPH to review internal systems and assist the state in developing and communicating how HIV surveillance will operate in the future.

Complete and accurate surveillance is an essential public health planning tool that makes it possible for public health officials to monitor emerging trends in the epidemic and target scarce prevention and care resources where they are most urgently needed. Since it launched HIV surveillance in 1999, Illinois has collected more than 13,000 HIV case reports.

The Centers for Disease Control and Prevention (CDC) is pressuring all states to adopt name-based HIV reporting, which it considers a more accurate and consistent collection method. Despite a strong reprimand to accept non-name-based data by the Institute of Medicine in its 2003 report Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act, CDC has refused to integrate data from 13 non-name-based states into its national HIV projections. The agency claims it cannot compare code-based data against name-based data reported from other states. Ironically, no state provides names to the CDC; name-based records are converted to codes before being sent to CDC headquarters in Atlanta.

CDC’s longstanding refusal to accept non-name-based data could prove disastrous for the 13 jurisdictions that use a code-based system next year when funding decisions for the Ryan White CARE Act will be based in part on the proportion of HIV cases that are recorded with the CDC.

At least 10 of the 13 jurisdictions without name-based reporting, including California, Massachusetts, Washington, and Philadelphia, are in the process of switching to name-based reporting systems.

AIDS advocates fear that even by switching to name-based reporting, states like Illinois will be financially penalized for not having as complete data sets as states with longstanding name-based systems. Advocates are calling on Congress to remedy this unfair treatment when it considers CARE Act re-authorization legislation later this year.

AFC’s website contains a detailed article on HIV/AIDS surveillance and a set of “frequently asked questions” to educate concerned Illinoisans about these important issues. Access this and a petition to Congress on HIV surveillance at www.aidschicago.org.

Founded in 1985 by community activists and physicians, the AIDS Foundation of Chicago is a local and national leader in the fight against HIV/AIDS. We collaborate with community organizations to develop and improve HIV/AIDS services; fund and coordinate prevention, care, and advocacy projects; and champion effective, compassionate HIV/AIDS policy.

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