Illinois residents wondering if they have HIV, the virus that causes AIDS, may find themselves facing difficult decisions next month when the state begins tracking the virus using patients’ names instead of anonymous codes.
People still will be able to get an anonymous HIV test with an assigned number through which the results are reported back. But if someone who tests positive goes to a doctor or hospital for care, the provider will have to report the patient’s name to local health authorities.
Public health officials insist names will remain confidential, just like the identities of people with AIDS or other infectious diseases that are tracked by name already.
AIDS activists say they are resigned to the change because much-needed federal funds would be jeopardized without it. Yet advocates also fear the move will deter some people from seeking treatment early, when it’s most likely to help.
“Anonymity has always been part of successful testing programs,” said Brad Ogilvie, who runs an AIDS prevention group in the western suburbs called the Mosaic Initiative. “My concern is we’re never going to get those who most need to know their status if we tell them, ‘By the way, if you’re HIV-positive, your name goes in to the state.’ “
Until now, Illinois has tracked HIV patients by unique alphanumeric codes, a strategy designed to encourage testing by protecting the identity of people who carry the virus.
Officials at the federal Centers for Disease Control and Prevention say code-based reporting is less accurate, so the agency counts only those HIV cases reported by name. Because CDC figures are used to allocate federal funds, Illinois faced losing a lot of money if it didn’t agree to change its method.
“The state is being forced to move to name-based reporting or risk losing millions of dollars for essential HIV care services,” said David Munar, associate director of the AIDS Foundation of Chicago. “We’ll look like we have no recorded cases of HIV diagnosed in Illinois, because they won’t accept our data, when we’ve actually collected more than 14,000 case reports since 1999.”
The new policy was prompted by the expiration of the Ryan White CARE Act, the federal program that funds services for people living with AIDS and HIV. Congress is expected to make critical changes in the statute when lawmakers vote to reauthorize it next year.
If the Bush administration has its way, the new version of the law will shift millions of dollars away from urban centers such as Chicago to expand care in rural areas. In addition, the formula for distributing the money would be based on the number of HIV and AIDS cases in each area, instead of just the AIDS cases, as is the case now.
So unless Illinois and about a dozen other states conform to the CDC policy and stop tracking HIV by code, they will not obtain their full share of funding. Munar estimates that, under the administration proposal, Illinois would lose at least 10 percent of the more than $74 million per year it now gets from the CARE program, beginning in fiscal 2007.
