An article published in Social Problems states that Michigan health departments have been secretly collecting names and demographics of individuals who have taken the confidential HIV test and using those names to pursue legal cases.
Since 2008, all 50 states, including Michigan and Illinois, have been reporting the names of individuals who take confidential HIV tests. The names are kept indefinitely and cannot be removed once they are entered into the system.
In metropolitan cities, like Chicago, these names are also reported to the local health department. This confidential name-based reporting is a reaction to changes in the Ryan White CARE Act, which provides millions of dollars to HIV and AIDS research and programs. The CARE Act now requires that all states use confidential name-based reporting in its data in order to keep its funding.
However, name-based reporting in Illinois is not what is described in the article about Michigan. "I would urge people not to be afraid to get tested because of name based reporting" said Ann Hilton Fisher of the AIDS Legal Council of Chicago (ALCC). "Illinois has very good confidentiality laws ... probably the best in the country."
Illinois has never had a confidentiality breach of the surveillance database for HIV tests nor for any of the other 60 tests, including AIDS, which had already been using name-based reporting. According to Fisher, "Healthcare providers and insurance companies, because of HIPAA [the Health Information Portability and Accountability Act], have quite strict policies in place. The problem comes when individuals, unfortunately, find it hard to keep quiet."
She used, as an example, the story of a phlebotomist who found out that one of her patients had HIV. She then found out that her nephew worked at the same place as the patient and she told her nephew. The phlebotomist was fired. Reportedly, only on a small, individual basis do confidentiality breaches occur.
While it does make mention of the Criminal Transmission of HIV Act—through which a person who exchanges bodily fluid with another without informing them of a positive HIV status can be prosecuted—the AIDS Confidentiality Act states, "All information and records held by the Department and its authorized representatives relating to known or suspected cases of sexually transmissible diseases shall be strictly confidential and exempt from inspection and copying under The Freedom of Information Act, as amended.
"The Department and its authorized representatives shall not disclose information and records held by them relating to known or suspected cases of sexually transmissible diseases publicly or in any action of any kind in any court or before any tribunal, board, or agency, and such information shall not be released or made public by a court conducting proceedings."
In addition, the Illinois Medical Patient Rights Act states, "Each physician, health care provider, health services corporation and insurance company shall refrain from disclosing the nature or details of services provided to patients" except in very specific cases.
Additionally, the Illinois AIDS Confidentiality Act states that "No person may disclose or be compelled to disclose the identity of any person upon whom a test is performed, or the results of such a test in a manner which permits identification of the subject of the test" except in cases such as police officers and paramedics who have come into contact with a person's blood or bodily fluid. Fisher said that, in Illinois, a person can receive monetary damages in the amount of $2,000-$10,000 for breaches in confidentiality.
But, for those who do not want to give their names, Illinois still allows people to test anonymously either at a facility using a code or at home using the home test. Said Fisher, "We encourage people who are worried to feel free to call us."
When asked about ALCC's reaction to the name-based reporting, Fisher said, "We fought it along[side] the AIDS Foundation [of Chicago], but when the government says they will cut off the money we're not gonna win that battle." She noted, however, that ALCC has managed to get the penalties for confidentiality breaches doubled.
