Privacy, Confidentiality and Disclosure

To whom should I disclose my HIV-positive status?

This is a deeply personal decision that individuals must make for themselves. The most common situation involving a legal obligation to disclose one’s HIV-positive status is to sexual partners—not previous partners, but current and new ones. Some states require this. See “Disclosing your HIV Status” and “HIV Criminalization” for more information.

You also may have a legal obligation to disclose when you share injection drug equipment with someone; donate blood, organs or tissue; do a certain job (there are very few of these); or visit a physician or a dentist in the state of Arkansas (the only state with this requirement).

In general, Lambda Legal does not encourage people to disclose their HIV-positive status to employers and service providers who might discriminate  unless there is a legal obligation to provide that information or it is in the person’s best interest to disclose. Lambda Legal is working to limit or eliminate the instances in which disclosure of one’s status is legally required.

On the other hand, Lambda Legal recognizes the benefits of voluntary disclosure—both for the person living with HIV and for the people in their lives—when it is truly safe for the person to share this information. With those benefits in mind, we will continue to work toward a world where it is not only safe to do so, but where people living with HIV feel empowered to share their status, are not stigmatized or marginalized as a result and can thereby access the care and support they need from family, friends and co-workers.

What rights do I have to maintain my privacy and the confidentiality of my HIV status?

Because your HIV status is personal medical information, you have a right to keep it private and confidential. It is critical that this right be respected by health care providers and insurers, but it is important in other realms too, because having an HIV diagnosis often still carries great stigma.

In the early years of the epidemic, a number of states enacted laws to protect the privacy of HIV-related information. Unfortunately, some of these protections have been eroded in recent years, by both public health and law enforcement officials. Public health officials have used information about HIV status to encourage testing and to try to keep HIV-positive people in care. Law enforcement officials have used it to punish people for allegedly failing to disclose to their sexual partners (see HIV Criminalization section). 

The right to privacy and confidentiality varies by state, but one thing holds true across the board: The more people to whom you voluntarily disclose your HIV-positive status, the harder it is to claim the right to keep it private. And the choice to be “open” about your HIV-positive status is not easily undone, so the decision to be out about it should not be made lightly.

Which laws protect my HIV status from public disclosure?

The three main sources of protection for HIV-related information are the Health Information Portability and Accountability Act (HIPAA), state laws specifically protecting HIV-related information and “common law” created through lawsuits, such as those including claims for invasion of privacy or defamation.

What are the limitations of these three kinds of HIV privacy protections?

HIPAA applies only to medical information that is disclosed or shared between a patient and a health care provider. Also, if there’s a violation,  patients can’t file lawsuits on their own; such cases can only be prosecuted by the U.S. Department of Health and Human Services (HHS) Office of Civil Rights (OCR).

The state laws specifically protecting HIV-related information vary widely from state to state. Many of them apply only to test results or to information shared within the context of the patient-provider relationship. And because the monetary awards are often small, they aren’t a very strong deterrent—although some advocates have been able to use these laws to leverage out-of-court settlements or better behavior by those in violation.

Lawsuits brought under state common law are another tool to consider when there has been significant harm that can be documented. Such cases are not easy to win, however. It is best to consult an attorney to determine whether this is a good legal strategy for you.

If you believe your privacy rights have been violated, please contact Lambda Legal’s Help Desk.

What should I do if a potential employer or my current employer directly asks me if I have HIV?

Lambda Legal can’t tell you the best way to handle such an inquiry—because sometimes just by refusing to answer, you will be presumed to have answered the question—but we can tell you what the law says about this:

A potential employer is not legally allowed to ask you this question if the company has not yet offered you a job. If you have been offered the job—contingent only upon successful completion of a medical exam—or are already working in the position, an employer is allowed to ask if you are HIV positive as long as they ask the same question of everyone who holds this or a similar position. Either way, you may want to ask whether and/or how a person’s HIV status is relevant to the ability to do the job.

There are still a few occupations for which employers can legally ask about someone’s HIV status. However, Lambda Legal is working on reforms that would make it clear that HIV-positive individuals can safely perform any job in any occupation without any special accommodations.

In the meantime, it is wise to either refuse to answer or to be truthful in your response. Lying about your status in response to a lawful inquiry can be a problem later if you end up trying to take that employer to court.

If I disclose my status to my employer, is my employer required to keep it confidential?

The answer to your question depends on the reason you have disclosed your status. If you are disclosing simply because you want people at work to know, then the employer probably is not obligated to keep that information confidential—in part, because you are not attempting to do so. If, on the other hand, you are specifically informing your employer because you must do so (for instance, to request an accommodation under the ADA), then the employer is required to keep such information confidential.

Similarly, if your boss asks you your HIV status simply because he or she is curious—and you choose to disclose your HIV status—then your answer may not be subject to any confidentiality restrictions. If, on the other hand, your employer feels the company has a right to know or an obligation to ask the question to evaluate your ability to perform the job safely, then the information must be kept confidential (though it might be possible to challenge that demand legally).

Because this area of the law can be a little ambiguous and confusing, it is a good idea for all employers to treat HIV status as confidential information, regardless of the reason for disclosure.

When I go to the doctor or dentist and fill out the intake form, do I have to disclose my HIV status? If the form asks for it, can I leave it blank?

In all but one state, you are not legally required to disclose your HIV status when seeing a doctor, dentist or other health care provider. (Arkansas requires disclosure to one’s dentist.) However, you should keep in mind that health care providers may be able to provide better care when they are aware of all factors that may be affecting your health. For instance, failure to disclose HIV medications may make it more difficult to identify adverse drug interactions. And any information you share with health care providers should remain confidential because it is covered by the provider-patient privacy protections.

So while it may not be required, disclosure of HIV-related health information to trusted providers is a best practice for your personal health.  If you feel you have been mistreated or discriminated against after sharing your HIV status with a health care provider, please contact Lambda Legal’s Help Desk at lambdalegal.org/help.

What are my rights to privacy and the confidentiality of my HIV-related information within the context of a health care provider-patient relationship?
Does disclosing my HIV status mean that any doctor can ask me about my sexual practices?

Disclosure of your HIV status should have no effect on whether your doctor asks about your sexual practices. A good doctor—or other type of health care provider—is going to ask about your sex life if that information is relevant to the reason you are seeing this particular provider. As the patient, you always have control over what information you do and do not share with your doctor about your sex life. Just keep in mind that a doctor with all of the relevant information can better assess the situation and provide you with the recommendations, care and treatment you need to maximize your health!

FOR MORE INFORMATION: Contact our Help Desk if you feel you have experienced discrimination.