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Thursday, Dec. 29, 2005 05:52 am

Naming names

HIV/AIDS groups are unsure how new reporting system will work

On Jan. 1, Illinois will abandon its practice of reporting HIV cases by code and instead adopt a name-based system like that used by many other states. Illinois Department of Public Health director Dr. Eric Whitaker announced the change in October, saying that the U.S. Centers for Disease Control and Prevention strongly urged states to implement name-based reporting to ensure accuracy and consistency of HIV data. Nevertheless, organizations that work with HIV-infected individuals and those with AIDS will continue anonymous reporting until they receive a word from the IDPH, which has not yet issued any directives on how the name-based system will work. “It’s not going to be a huge change,” says Tom Hughes, IDPH deputy director for health protection. The new system will mirror the state’s AIDS-reporting system, which has involved the use of names for many years. The only difference is a new case-report form. Reminders of the switch will go out this week, Hughes says, and training is always available from the agency. In September, an advisory committee of HIV patients, health-care professionals, and service providers found that Illinois’ code-based system failed to meet CDC requirements for reporting accuracy. Hughes says that the IDPH submitted a plan outlining how Illinois will accept name-based reporting from HIV service providers, to the CDC on Dec. 19. Whitaker acknowledges a “long-standing debate within the medical community and HIV/AIDS groups” over patient privacy. However, earlier this year the Bush administration restated its desire that HIV reporting be incorporated into future funding-distribution guidelines. In what essentially amounts to an ultimatum, the CDC has strongly suggested that states use name-based reporting. Most organizations agree that in the end, access to funding trumps any ideological arguments over confidentiality, particularly because there has never been a breach of privacy since Illinois began HIV surveillance in 1999. According to Mark Ishaug, executive director of the AIDS Foundation of Chicago, the federal government has made states’ decision simple: Either switch to a name-based system or lose millions of dollars for critical care, prevention, and housing services for people living with HIV. The CDC maintains that a uniform name-based system is necessary for the comparison of data between states. Although states are under no legal obligation to switch to name-based reporting, many fear being shut out of federal funding for HIV services if they do not comply. The AFC also wants to ensure that Illinois is not penalized for using code-based reporting up until now when Congress discusses reauthorization of the Ryan White CARE Act, which expired in September and provides much of the federal funding for HIV/AIDS services. For years, HIV/AIDS advocate groups resisted name-based reporting, fearing that such measures would deter people from being tested or seeking treatment. Randy McClallen, communicable-disease coordinator for the Peoria County Health Department, doesn’t know whether name-based reporting will negatively affect treatment or testing, saying, “That happens with anonymous testing anyhow.”
Jack Bishop, executive director of the Phoenix Center, in Springfield, says that even under the new rule, patients at his facility will have the option of anonymous testing. “It’s very important to maintain anonymous testing,” Bishop says. “The discrimination and stigma associated with HIV still linger.”
Illinois began tracking HIV-positive patients in 1988, using generic information such as ethnicity, sex, and age. In 1999, the state adopted a system using code identifiers. As of October, the Springfield Department of Public Health has reported 11 HIV cases this year. Under the Bush administration, Bishop says, he’s seen increased accountability when money is at stake. “The environment of HIV prevention has changed drastically. I see strong rules and regulations around HIV-prevention services,” Bishop says. “In five years since I’ve been here, I’m concerned that these directives haven’t helped slow down the epidemic.”
But, he concedes: “The most important thing is for individuals to know their status.”
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