Associated Press - December 7, 2005
Carla K. Johnson

The state risks losing millions of federal dollars if it doesn't drop its current system of tracking HIV infection using only patient identification codes, a system that doesn't meet federal standards.

Even with safeguards to protect confidentiality, the new system will discourage testing and treatment, said some HIV-infected residents.

"Without a doubt, it would have discouraged me from both," said Barb Marcotte, 38, a Chicago social worker, who first tested positive for HIV in 1991 after her fiance discovered he had been infected by a former girlfriend.

"Now I'm open about my status, but, certainly, when I found out, I was not at all open about my status," Marcotte said.

Anonymous testing still will be available under the new reporting system. People will be able to take an HIV test and get their results without revealing their names, but they won't be able to get treatment without their names being sent to the state.

The change in reporting is happening because state officials expect that starting in 2007 the federal government will add HIV data - no longer AIDS cases alone - to its complicated funding formula for divvying up money to states from its largest HIV/AIDS program.

Tracking HIV data would have to meet Centers for Disease Control and Prevention standards if the planned funding formula change happens, and that means only states with name-based tracking systems would get their cases counted.

The CDC has called on states to use name-based systems to avoid counting patients more than once, said CDC spokeswoman Jessica Frickey.

Other states still using code-based HIV tracking systems include California, Hawaii and Massachusetts.

An estimated 29,500 Illinois residents have HIV or AIDS. About 14,000 of them are HIV positive, but don't have an AIDS diagnosis, and wouldn't be counted by the CDC if the state doesn't change its reporting system.

Illinois receives about $74.5 million a year from the largest federal program, the Ryan White CARE Act, which funds services for uninsured and low-income patients. The state gets another $37.4 million for HIV/AIDS from other federal programs.

Only a small portion of the Ryan White money is at risk but exactly how much is unclear.

Tom Hughes, a deputy director with the Illinois Department of Public Health, said the state could lose several million dollars if it doesn't start tracking HIV by patients' names.

Other diseases such as syphilis, tuberculosis and AIDS already are tracked by patient names, Hughes said.

"AIDS names have been reported for more than 20 years," Hughes said. "We've never had a security breach."

But a breach in Palm Beach County, Fla., this year has some advocates concerned. In that incident, the names of 6,500 HIV carriers were mistakenly e-mailed to 800 county health workers.

Safeguards will help prevent a breach in Illinois, Hughes said. Only about five workers at the state level will have access to the HIV patients' names, he said.

"All the HIV staff take an oath of confidentiality and are trained on how to handle confidential information," Hughes said. "They are held accountable if something should happen."

Currently, a person who tests positive for HIV in Illinois is assigned a code number when the case is reported to the state's public health system. It's a system that was started in 1999 to protect patient privacy and encourage HIV testing.

The code starts with the first and third letters of the patient's last name, followed by the number of letters in the last name, followed by an "F" or "M" for gender at birth and a number representing the patient's date of birth. For example, the code for Jane Doe, born on Jan. 12, 1968, would be DE3F01121968.

The 14,000 HIV-positive patients in Illinois' current code-based system will not be counted in the new system until they visit a doctor or other health-care provider.

It will take time to build the database with numbers that may drive future federal funding, said David Munar, associate director of the AIDS Foundation of Chicago. He represents the foundation on a steering committee helping the state with the transition.

"If providers don't fill out the reports and turn them in, you don't get credit for those cases," Munar said.

Congress has not yet reauthorized the Ryan White CARE Act, which expired in September, and health advocates are proposing revisions to it to safeguard Illinois' funding during the transition from code-based to name-based HIV reporting.

"With the epidemic continuing to grow and people living longer, we need these scarce federal dollars," Munar said.

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