Do you have to disclose your HIV status to other people? Does it make a difference whether they’re sexual partners, health care providers, or employers? You may worry that people will discriminate against you if they know you have HIV.
Your HIV status is personal medical information. There are laws that protect the privacy of your health information, including if you have HIV. But there are also laws in many states that say you must share your HIV status with others in certain cases. This isn’t true in all states, so it’s important to know what the law is where you live.
Two federal laws help protect you from discrimination if you have HIV or any other medical condition:
- Section 504 of the Rehabilitation Act of 1973
- The Americans with Disabilities Act (ADA) of 1990
These laws bar any institution that receives federal funds from denying you or delaying care or services because you have HIV. This includes hospitals, dental clinics, nursing homes, and drug treatment centers.
The ADA protects you from job discrimination based on your HIV status. This law applies to any employer with 15 or more people.
Does HIPAA Protect My Privacy About HIV?
You may have heard about a federal law called HIPAA (Health Information Portability and Accountability Act). It protects your personal health information, including HIV status, from being shared without your knowledge or consent in certain cases.
HIPAA’s privacy laws don’t keep everyone from sharing your HIV status. These laws only apply to what are called “covered entities”:
- Any health care provider who electronically sends out health information for transactions like insurance claims processing
- Most health insurance plans, such as private or public insurance providers, dental plans, or drug protection plans
- Health care clearinghouses that process information or services for health plans and health care providers
- Business associates that handle insurance claims or billing
HIPAA doesn’t apply to group health insurance plans with 50 or fewer participants that are set up and run solely by an employer.
HIPAA also permits covered entities to share your HIV status without your consent when the law requires it to protect other people’s health.
Covered entities may share your HIV status in situations like:
- Law enforcement investigations
- Physical or sexual abuse situations
- Identification of dead bodies
- Organ donations from dead bodies
- Certain types of medical research
Your health care provider or hospital may share your HIV status with your health insurance company if it’s needed to cover your medical treatment.
Disclosure to State and Federal Governments
When you test positive for HIV, your doctor, clinic, or testing site is legally required to report the result to your state’s health department. Public health officials in your state record this information to keep track of local HIV rates.
Why does your state health department need to know you have HIV? Your state can qualify for federal government money to support health programs and services for people with HIV. This is based on how many people living there have tested positive for the virus.
Your state health department removes all information that identifies you from this report. It sends it to the CDC, the national government agency that keeps track of health trends. The CDC doesn’t share this information with anyone: not insurance companies, employers, nor any other agency or person.
Private test results. In 31 states, certain blood testing sites are allowed by law to screen you for HIV without asking your name or any personal information. Ask any clinic, blood testing site, or service if they offer anonymous HIV tests before you give anyone your name or personal information.
Disclosure Before Sex or Sharing Drug Needles
Under some state laws, you must share your HIV status to other people if there’s a risk that you could pass the virus to them. This is through sex or sharing needles to inject drugs. In some states, health departments require your health care providers to report the names and addresses of your sex or needle-sharing partners if they know this information. They must do this even if you don’t offer it.
Eighteen states have laws that require you to disclose that you’re HIV-positive to any other person before you have vaginal, anal, or oral sex. Some states can charge you with a crime if you don’t disclose your HIV-positive status to sex partners even if:
- You use a condom during sex.
- Your partner isn’t infected with HIV due to your sexual encounter.
- You take anti-retroviral therapy (ART) to control your HIV viral load and greatly reduce the risk of passing it to others during sex.
These laws are designed to help prevent the spread of HIV. They’re meant to deter people with HIV from purposely transmitting the virus to others who aren’t aware they’re at risk. You may even be charged with crimes like reckless endangerment or assault in some states if you don’t disclose your HIV status to someone before sex.
There are no longer any laws that make nondisclosure of HIV a crime in
- New Mexico
- Washington, DC
In most states, you’re only required to disclose your HIV status if you know it at the time you have sex. But in Indiana and North Carolina, you’re required to contact previous sex partners to let them know you’ve tested positive for HIV.
According to the law, if your state requires you to reveal your HIV status to a partner before you have sex or share needles, you must do so. This is true even if they don’t ask you. Once you do so, that person isn’t required to keep that information private.
Do I Have to Tell My Health Care Provider I Have HIV?
In all but one state, you’re not legally required to disclose your HIV status to any health care provider to receive any medical care or service. Only Arkansas requires disclosure of HIV to dentists.
It’s against the law for any health care provider to deny you care simply because you have HIV. They may ask you about your sexual practices or if you take any medications to control HIV. That’s because this information helps them provide you with better care. For example, they may ask about all medications you take to avoid interactions with any other drugs they need to prescribe.
Information like blood test results that show you have HIV or your prescriptions for HIV medications are part of your medical record. Your health care providers must keep this information confidential unless you give permission to share it. The exception is in situations where others’ health may be at risk, as required by HIPAA.
If you need to talk with anyone who works at your clinic about your HIV or treatment, you have the right to ask to speak in private so nobody else overhears your conversation.
Do I Have to Tell My Employer or Co-workers I Have HIV?
The ADA protects you from employment or workplace discrimination due to HIV. You don’t have to tell your employer that you have HIV in most cases. Employers also can’t ask you if you have HIV when you’re interviewing for a new job or before they make a job offer.
Your employer can ask you about your HIV or other medical conditions in these situations:
- Once they’ve made a job offer but before you begin work, your employer may ask about your medical conditions. They can do this as long as they ask everyone else in the same job the same questions.
- Once you’re in your job, if you ask for any reasonable accommodations to do your work, like a schedule change to make time for frequent medical care, employers can ask you for the reason.
- Your employer may ask you about your medical conditions if there is objective evidence that you can’t perform your work or that you may pose a safety risk to others. They cannot rely on HIV myths or stereotypes to assume that you’re a safety risk or can’t do your job.
- When employers gather information for affirmative action efforts, they can ask about disabilities. You can choose whether or not you want to answer or disclose your HIV.
Your employer doesn’t have a legal right to know your HIV status unless it could affect your ability to do your work or could possibly put others at risk. For example, if you perform surgeries where you may be nicked and expose others to your blood, your employer may need to know you have HIV.
If you get health insurance through your job, your insurance company can’t legally disclose your HIV status to your employer.
If you do disclose your HIV status to your employer, the ADA still requires that they keep it in a separate file from your other employment information. It can only be accessible to certain people, usually the human resources staff.
Do I Have to Disclose My HIV Status When I Apply for Housing?
The federal Fair Housing Act protects you from discrimination when you buy or rent any home or residential property because you have HIV.
Unless you apply to live in a group home for people with HIV, you don’t have to disclose your HIV status to any housing agency.
If you apply to live in housing that’s only for people with disabilities, you may need to present a letter from your doctor that says you have a disability. The letter doesn’t have to say you have HIV.
Where can I Learn More About HIV Privacy or Disclosure Laws in My State?
You can learn more about U.S. laws to protect your right to privacy with HIV on the CDC’s website.
The CDC also regularly updates HIV disclosure laws in every state on their website.