Skip to content
They Told Your HIV Status — Is that Legal?

by Justin Hayford
AIDS Legal Council of Chicago

You’ve been out sick for two weeks, so your boss calls your doctor to find out what’s wrong with you. “It’s pneumonia,” your doctor explains. “People with HIV are particularly susceptible to it.”

After three years of mustering your courage, you finally find the words to tell your mother that you have AIDS. She’s the only person in the family you’ve ever told, and she is supportive and sympathetic, just the way you’d hoped she might be. But the next thing you know you’re getting calls from both your brothers, your sister, and two of your cousins, all expressing their concern about your health problem.

You break your leg and end up in the hospital for a week. When you submit your insurance claim, your insurance company contacts the hospital and asks for your complete medical records. The hospital turns all the records over — even the pages where your HIV status is written.

In each of these three examples, someone disclosed your HIV status without your knowledge or permission. You’ve probably heard that your HIV status is supposed to be confidential, and that certain laws protect that confidentiality. So the question is: did anyone break the law in any of these three examples?

The short answer is yes, although not in all of the examples. And you may be surprised to find out which of these unauthorized disclosures is legal.

OK, let’s back up a minute and look at the law (a project about as exciting as watching paint dry). The Illinois AIDS Confidentiality Act says, “No person may disclose or be compelled to disclose the identify of any person upon whom a (n HIV) test is performed, or the results of such a test in a manner which permits identification of the subject of the test.” In other words, anyone who knows your HIV status can’t tell anyone else without your authorization.

Of course, there are exceptions to this law. For example, if you’re involved in a blood accident with a police officer or paramedic, then those officials can be informed about your HIV status. But generally speaking, in “everyday life” your HIV status is confidential and protected by the AIDS Confidentiality Act. And notice that the law makes it illegal to disclose not only a person’s test result (even if it is negative) but also the identity of a person who is tested. If someone disclosed the mere fact that you had had an HIV test, technically that would be a violation of the law.

Some people have tried to argue that because the law talks about disclosing “test results,” it only applies to doctors, nurses and other medical professionals who see actual lab print-outs. But we at the AIDS Legal Council interpret the law much more broadly. After all, it says that “no person” may disclose test results; it does not say “no health care professional.” And so far, whenever we’ve had to use the law to protect someone’s confidentiality, we’ve been successful.

So let’s look again at our three examples in light of the AIDS Confidentiality Act. In the first, your doctor disclosed your HIV status to your employer without authorization from you. This is about as clear a violation of the AIDS Confidentiality Act as you can get — and a particularly aggravating one at that. If anybody should understand the importance of confidentiality, it’s your doctor. After almost twenty years of the epidemic, it’s clear how easily people can be fired, demoted, transferred, or generally screwed over on the job once their HIV status is known.

So what could you do in this situation? You could bring a lawsuit against your doctor. The law says that for each intentional violation of the Act, a court can award you $5,000 — or more, if, for example, your boss fires you because you have HIV. Of course, bringing a lawsuit is an awful pain in the butt, not to mention a major drain on the T-cells. You might do better to enlist an attorney’s help to settle the whole mess out of court.

How about our second example? Did Mom break the law by telling your brothers, sister and cousins that you have AIDS? You bet she did. And what can you do about it? Well, would you really consider suing your mother over this? Probably not. And even if you did bring a lawsuit, would the judge hold that the AIDS Confidentially Act protects people against private family gossip? Who knows? And even if you win, what then? You can’t garnish your mother’s Social Security check to collect the judgment you’ve been awarded.

Still, perhaps Mom could use a little legal education. Often the AIDS legal Council sends letters to family members, boyfriends or neighbors who have been spreading the word about a client’s HIV status. The letter simply explains the AIDS Confidentiality Act and warns them that continued disclosures could make them liable to a law suit. It usually shuts people up pretty quickly.

And in case you haven’t figured it out yet, our third disclosure — the hospital turning over your HIV status to your insurance company — is perfectly legal. That’s because insurance companies are specifically exempted from the AIDS Confidentiality Act. Your insurer doesn’t need your permission to get your medical records, HIV results and all. What a surprise that in the era of Neo-Conservatism, big business gets off scot-free.

Reprinted from tpanNOW, February/March 2000

(Note: The information in this article is intended to be general in nature. Plan to discuss your particular circumstances with an attorney for how this might apply to you.)