Names reporting in Illinois is successfully challenged

Here’s why AIDS activists are angry over the issue

When the Illinois Department of Public Health in Springfield first proposed in early 1998 a regulatory change to require names reporting, Lambda Legal Defense and Education Fund in Chicago sprang into action.

The organization submitted an 11-page comment refuting claims that the names of HIV-infected individuals will remain confidential and that names reporting will result in better surveillance of the disease.

Lambda’s comment notes that when Illinois began requiring HIV tests as a prerequisite for marriage licenses, the number of marriages in the state decreased dramatically. The General Assembly subsequently repealed the law in response to public outrage and clear avoidance of the testing requirement. There is every reason to believe that the proposed rules also will result in avoidance of testing."

The AIDS Legal Council of Chicago also objected to the state’s names reporting change, claiming that the collected names could be accidentally or intentionally disclosed, resulting in discrimination against people infected with HIV.

The groups’ efforts paid off. Last fall, the Illinois legislature did an about-face and switched to a non-name identifier system. Lambda officials are assisting the state health department with a two-year study of the new non-name identifier system.

"We’re working very hard with the health department to make sure everyone is making a good-faith effort to make it work, instead of setting something up to fail," says Heather Sawyer, JD, a staff attorney with Lambda Legal Defense.

So why were these groups so adamant that names reporting would lead to breaches in confidentiality and other evils?

Names reporting opponents say you only need to read the headlines to learn about the discrimination AIDS patients face when their disease status becomes known in their communities.

Lawsuit stems from confidentiality breach

For example, the family of an HIV-positive 15-year-old is suing their daughter’s school over an allegation that school administrators forced the student to reveal her HIV status, according to a May 4 article in the Miami Herald.

State prosecutors declined to file criminal charges against school officials for breaking the state’s confidentiality law because the student already had told at least four friends of her HIV status.

Such confidentiality breaches are common, experts say. Ann Hilton Fisher, executive director of the AIDS Legal Council of Chicago, wrote in a five-page letter to the Illinois health department that the organization already has handled a variety of HIV discrimination cases resulting from confidentiality issues, including the following:

    • A clergyman’s wife, who had found out from her husband that a parishioner was HIV-positive, told other people in the congregation.

    • A pharmacy assistant discovered an acquaintance had HIV after looking up the person’s prescription records, and then the pharmacy assistant told mutual friends.

    • A policeman told colleagues that a fellow officer was infected with HIV.

    • A participant in the Cook County Sheriff’s work-release program was forced to wear an identification badge saying he was HIV-positive.

    • A substance abuse treatment center employee gave a client’s HIV records to another client.

    • A Chicago Department of Health Infectious Disease Clinic nurse told a patient’s landlord that the patient had HIV.

Disclosures will occur’

"The department proposes to maintain anonymous testing sites, but anyone testing at these sites cannot maintain his or her anon ym ity for long. When that person presents to a doctor for medical care, then his or her name will be reported," Fisher wrote. "Creating a system in which 102 county health departments maintain lists of HIV-positive individuals will inevitably create situations in which unauthorized — and damaging — disclosures will occur. We already know that AIDS registries are not safe: in the notorious Florida case, 3,000 people with HIV lost their confidentiality in a single incident."

Ultimately, the Illinois health department agreed to form a group to study names reporting. The group met over the summer of 1998, and by the summer’s end, the group was convinced that the state should fund a study to see if the health department could meet the same surveillance goals through a less intrusive method, Sawyer says.

So the state moved to a non-name identifier that doesn’t identify people by name but allows health officials to determine how many people have HIV without getting double counts.

States and the Atlanta-based Centers for Disease Control and Prevention would obtain much better statistics of actual HIV infection rates if they abandoned the practice of counting every patient and instead relied on random blinded surveys, Sawyer says.

"We should not be adding additional deterrents to HIV testing," Sawyer says. "Until we figure out a way to assure people that it is in their best interest as well as for the public health status, then we shouldn’t be sending messages that if you come in you will show up on some governmental list that we can’t guarantee over time that we’ll be able to keep confidential."