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Information about HIV and AIDS is confidential. You may decide not to keep your information private, but it still is confidential as long as there is a law that protects it. Over thirty states, including Michigan, have a special law to protect HIV-related information.

There is a difference between "confidential" and "private."  Your "private" information is whatever you say it is: your age, your weight, the date of your last dentist appointment, or how fast you were going when you got your last traffic ticket. "Private" information is just whatever you don't want someone else to know, though you may not always be able to protect it. And it can change with the circumstances.

"Confidential" information is so sensitive, and maybe even damaging, that as a society we have decided to create special protections. Those protections usually are special laws that are created by the state or federal legislature because some particular kind of information is just too important to let it be disclosed recklessly.

Examples of confidential information are health and medical information, financial information, and information that can identify a person such as a Social Security number.

In Michigan the HIV confidentiality law protects everyone, whether they are HIV-positive or HIV-negative or HIV-untested. The HIV confidentiality law protects even the fact that someone has been tested - so it is more thorough than just protecting the results.

And Michigan's HIV confidentiality law applies to everyone, not just health professionals or government employees. In some states with HIV confidentiality laws, only people with certain jobs in health care or social services are controlled.

Example: Michigan's HIV Confidentiality Law

General rule: "All reports, records, and data pertaining to testing, care, treatment, reporting, and research, and information pertaining to partner notification under section 5114a, that are associated with the serious communicable diseases or infections of HIV infection and acquired immunodeficiency syndrome are confidential. A person shall release reports, records, data, and information described in this subsection only pursuant to this section." Michigan Compiled Laws 333.5131(1). (See a copy of the law here, in PDF format.)

This doesn’t say anything about whether the HIV status is positive or negative. Both are protected, as is the status of having been diagnosed with AIDS.

Exceptions to Michigan's confidentiality statute:

1. Written permission. An authorization from the Subject must include plain language that says that information related to HIV/AIDS is to be released. (Note this same requirement exists for an authorization that is supposed to permit disclosure of substance abuse or mental health treatment information.)
2. Partner notification
3. Child protection reports
4. Certain criminal offenses involving mandatory HIV testing.
5. Emergency first responders have the right to request HIV testing of a patient if they are exposed during a rescue in a way that makes the risk of HIV transmission medically reasonable. (If transmission is unlikely, like if my blood drips on your loafers while you pull me out of my wrecked car, then this exception does not apply.)
6. Court order or subpoena, IF the court holds a hearing and finds that the HIV information is relevant to the matter, can not be obtained any other way, and the need for disclosure outweighs any potential for injury to the HIV-infected Subject.
7. De-identified information about HIV can be disclosed to the state legislature for budget-setting purposes.
8. A single designated school district employee may be told the HIV status of an HIV-positive student IF it is necessary to prevent the risk of transmission to other students.
9. Child placement: A facility director may be told the HIV status of a minor resident IF it is necessary to care for the child.
10. A treating physician must disclose that a deceased person is HIV-positive to the funeral home director who has accepted the body.
11. Safe harbor provision: Any person can tell the authorized HIV program representative of a local health department IF it is necessary to protect the health of an individual, or to care for a patient, or to prevent the risk of transmission.

Penalties for violating Michigan's HIV confidentiality statute.

• Civil: The Subject can sue for actual damages or $1,000 per disclosure, plus costs and reasonable attorney fees.
• Criminal: The local prosecutor (or the attorney general - MCL 333.1299) can investigate and charge the person who talked with a misdemeanor, punishable by up to a year in jail and/or up to a $5,000 fine.

NOTE: If you do not work for the health department and are not involved in child placement (see exception #9), then disclosure of anyone’s HIV status to you may be unlawful if you do not have written permission to learn of it. Read the exceptions carefully.

NOTE ALSO: Don't be misled by the fact that the HIV confidentiality law is found in Michigan's Health Code, and think this law only applies to health care professionals. Of course it is in the Health Code, it concerns a matter of an individual's health. Where else would it be - the Motor Vehicle Code?

HIV Confidentiality when there is no special law

Even where there is no state law that adds special protection for HIV/AIDS-related information, it is still protected health information that is covered by HIPAA, the Health Insurance Portability and Accountability Act. HIPAA is a federal law that creates, for the first time, a national minimum standard for the care and use of health information. Like Michigan's HIV law, HIPAA protects the information, not just the paper records that contain the information.

(HIPAA requires health care providers to give their patients a Privacy Notice to explain what the provider is going to do with the patient's health information. See the link, left, for our suggested response, the Patient's Privacy Notice.)

Unlike Michigan's HIV law, HIPAA only directly controls health care providers and the organizations and businesses that work with them and for them, like ambulance companies, hospital auditors, and accountants. The important feature  of HIPAA is that it protects health information wherever it goes, so if a health care employee learns medical information at work and then discloses it later to her boyfriend, her employer is responsible.

This is especially important in the case of information related to HIV and AIDS. There is a tendency to consider a person's HIV status as just another piece of information about them, much like the work they do, the kind of car they drive, and who they spend time with. But information about HIV and AIDS is very, very different and HIPAA makes that clear. HIV-related information is medical information, not social information, and anyone who learns it should protect it.

Whether or not a particular state has an HIV confidentiality law, each person must decide how private they want to keep their information. This is true, of course, about many things. But the stigma related to HIV/AIDS makes the decision more important, and more personal. And the harm that can come from mishandling that information can cause great personal pain and hardship. It must be a personal decision, and each person should be allowed to make it for themselves.

And that is why, in every state whether there is a special confidentiality law or not, every single person who learns the HIV status of their clients and patients and customers should keep it quiet. If your client's HIV status is relevant to the work you are doing for them, then learn it, know it, use it, and store it carefully. But if the HIV status of your client, or friend, or customer is not relevant to what you are doing, then don't ask, don't record it if you're told, don't make any assumptions about what you are supposed to do with it. Ask for permission before you do anything.

The goal of the confidentiality laws is to let the person living with the medical condition, whatever it is, control what happens to their information. There is no good reason to ignore that legislative respect for personal choice, and talk about someone else's HIV status without their permission.