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Know Your Rights: HIV

For more than five decades, Lambda Legal has been the nation’s leading advocate for the rights of people living with HIV, fighting discrimination and advancing justice in courts, legislatures, and communities across the country. We won the first HIV civil rights case in 1983 and since then we have been at the forefront of the movement for equality and dignity. Our HIV Know Your Rights page is designed to empower individuals with essential information about their rights at work, in health care, and beyond. Please note that this resource is intended for general informational purposes only and should not be considered legal advice. For specific legal questions, we encourage you to contact Lambda Legal’s Help Desk or consult with a qualified attorney.

HIV Testing

  • In a confidential test, the tester knows who is being tested and reports the results to the person being tested and the government. If the test result is positive, the result and the person’s name will be reported to the state or local health department for the purpose of estimating state HIV rates. The state health department will remove all personal information and share remaining information with the Centers for Disease Control and Prevention, which does not share this information with anyone. The tester also adds the results information to the person’s medical records. Results in the person’s medical record may be shared with the person’s health care provider and health insurance company. Beyond government, health care, and health insurance, state and local privacy laws protect the person’s results, and the results can only be released with the person’s permission. The test result is supposed to be treated as confidential by everyone who has access to it, as is all information in a person’s medical records.

    In an anonymous test, the person is tested without disclosing their identity to anyone, and the testing facility gives the person a unique identifier—a number, instead of using the person’s name—to deliver results. After the testing is complete, the result is not connected to the person tested. Most, but not all, states allow anonymous testing.

  • Reporting requirements and practices vary by state and by testing facility. Confidential results are added to the person’s medical records, and some facilities also report the results to health care providers and health insurance companies. Testing that is paid for entirely or in part by federal funds requires the legal name of the person being tested, and results must be reported to the state government.

    How the collected information may be used varies by state.

    In every state, the names and certain demographic information of people testing HIV-positive are reported to the federal government for purposes of better understanding the epidemic across the United States (also see the below question about molecular HIV surveillance). In many states, the information may also be used to identify and contact people living with HIV who are not receiving HIV-related medical care, in efforts to re-engage them in such care. If you don’t want your name connected to your test result, choose an anonymous test or an at-home test.

  • In addition to other reporting requirements, when a person living with HIV sees a doctor for treatment, they are tested to see how they would respond to drugs that the doctor might prescribe. These tests improve care by increasing the chance that the medication is effective. Since 2018 – per a mandate from the CDC – all states accepting HIV prevention funds are required to conduct “molecular HIV surveillance” by collecting the data from these tests and reporting it to the CDC. This data is then aggregated and made available to researchers and other members of the public (subject to limitations) through research databases.

    Before the data is given to the CDC, the state and territorial health departments delete patient names, physician names, and other identifying or locating information.  Records maintained by the CDC are identified by computer-generated codes, patient date of birth, and a state/city assigned patient identification number. There is currently no requirement that doctors tell their patients that the results of their resistance testing, including potential identifying information, will be used in this way.

  • Except in two states (Indiana and North Carolina), people testing positive for HIV are not required to inform previous sexual partners of a positive result. However, once you become aware of your HIV-positive status and then have sexual relations, state laws often require that you disclose your positive status to those sexual partners.

    State health officials often encourage people to notify previous sexual partners and, if requested, will contact partners themselves without disclosing the newly diagnosed person’s name. But such “partner notification” programs are voluntary for the newly diagnosed person, and with the exception of Indiana and North Carolina (which require that you inform previous partners, though not necessarily through the partner notification program), there are no criminal penalties for not participating.

    If the idea of telling your positive result to a previous (or current) sexual partner is very stressful to you, these partner notification programs can be very valuable. The person notified can then be tested and find any needed health care, and you don’t need to do the disclosing yourself.

    If, on the other hand, it is important for your own safety that a previous sexual partner not know that you recently learned you are HIV-positive, think carefully about whether “partner notification” services are right for you. If you have concerns about your safety, consider the repercussions if the person can guess your identity despite not being told your name.

  • Home HIV tests vary in their reliability. There is currently only one FDA-approved at-home HIV test.  The test, called OraQuick, uses a mouth swab and provides results in approximately 20 to 40 minutes. About 1 in 5000 people who take this test receive a “false-positive” result after a swab test. Those who receive a positive test need to follow up with a laboratory test to confirm the results.

    In addition, a negative result from the OraQuick test does not necessarily mean that an individual does not actually have HIV. The OraQuick test is not reliable at detecting HIV until at least three months after infection. And even then, about 1 in 12 tests results in a false negative, especially when used by individuals taking medicine to treat or prevent HIV.

    The main advantages of home tests are the anonymity and relative accuracy. They generally cost about $45 each. There are also various programs that provide kits for free.

    The downsides of using an at-home HIV test include (1) results are not provided by a counselor (though the OraQuick manufacturer provides a phone number to call for confidential counseling); and (2) at home tests make it harder to ensure that people who test positive find the health care services that they then will need.

PrEP (Pre-Exposure Prophylaxis)

  • PrEP stands for “pre-exposure prophylaxis,” a method of preventing the transmission of HIV. A person who is HIV negative but at higher risk than average for contracting HIV can take two HIV medications (in one tablet) on a regular basis and, by doing so, greatly diminish the chance of acquiring HIV if exposed to the virus.

    You can receive a prescription for PrEP by talking to a health care provider that provides PrEP consultations. Examples of these health care providers include your primary care physician, a community health center, sexual health clinics, or any other nonprofit health clinic. Find a clinic that provides PrEP consultations by visiting locator.hiv.gov.

    See below for information regarding obtaining PrEP if you cannot afford it.

  • First find out why the provider is refusing to prescribe PrEP for you—and then contact Lambda Legal’s Help Desk. There are very few legitimate medical reasons for refusing to prescribe this medication upon request. We want to hear about health care providers who are refusing to prescribe PrEP so that we can address this significant obstacle to care.

  • No. Your decision to take PrEP is a completely private matter between you and your healthcare provider. There are no laws that require a person to disclose use of PrEP.

  • There should be no effect on your ability to obtain either, but that doesn’t mean that an insurance company will not try to deny coverage on this basis. If you or someone you know experiences difficulty obtaining health or life insurance as a result of using PrEP, please contact our Legal Help Desk.

  • Most insurance plans and state Medicaid programs cover PrEP. If you don’t have insurance or Medicaid coverage, other programs provide PrEP for free or at a reduced cost. A few of these programs are described below.

    • Ready, Set, PrEP is a program funded by the US Department of Health and Human Services that provides free access to qualifying individuals, nationwide. Ready, Set, PrEP provides PrEP at no cost to those who qualify. You can apply for this program if (1) you don’t have health insurance coverage for prescription drugs; (2) you have taken an HIV test and received a negative result before starting the program; (3) you have a prescription for PrEP; and (4) you live in the United States, including tribal lands or territories. This program is available to all, regardless of income. Through Ready, Set, PrEP, you will not pay for the medicine, but the costs of clinic visits and lab tests may vary depending on your income. You can apply to receive assistance by either filling out the online application or by providing a printed version of the application to your health care provider.
    • Co-pay assistance programs are sponsored by drug manufacturers and help cover part of the cost of PrEP. Through a co-pay assistance program, manufacturers will provide coupon cards that can cover up to a certain amount in co-pays a year toward your PrEP prescription. To qualify for a Co-pay assistance program, you must not receive benefits from any government sponsored insurance, such as Medicare or Medicaid. Gilead and ViiVConnect both offer these programs for HIV prevention medication. Their applications are available online.
    • Patient Assistance programs are a different type of manufacturer sponsored assistance that may allow you to receive PrEP free of charge. To qualify, you must be uninsured, and these programs consider income level in determining whether you qualify. Gilead and ViiVConnect both have patient assistance programs and offer applications online or by phone.
    • Some states have PrEP assistance programs. The benefits of these programs vary state to state. In some states, programs cover medication. In other states, programs cover clinical visits and lab tests. Some states’ programs cover both.
  • If you have taken PrEP orally, you are required to wait three months after your last dose before donating blood. If you have received an injection of PrEP, then you must wait two years before you are eligible to donate blood. The purpose of the waiting period is to ensure the donated blood is HIV negative. In particular, HIV prevention medication taken within the suggested waiting periods may interfere with testing and cause false negatives.

  • For now under federal law, most insurance plans are required to cover PrEP (pre-exposure prophylaxis) without cost-sharing, thanks to its designation as a recommended preventative service by the U.S. Preventive Services Task Force (USPSTF). This means that if you have private insurance or Medicaid expansion coverage in most states, PrEP and related services, such as necessary lab tests and medical visits, should be fully covered with no out-of-pocket costs.

    If you are on Medicare, coverage can depend on your specific plan. Many Medicare Advantage plans include PrEP as part of their drug formularies. However, traditional Medicare (Parts A and B) does not typically include prescription drug coverage unless paired with a Part D plan or a Medicare Advantage plan offering prescription drug benefits. It’s essential to review your plan’s coverage or contact your provider for clarification.

    For those enrolled in Medicaid, the situation varies by state. Most states provide full coverage for PrEP under their Medicaid programs, but the specifics can depend on whether your state has expanded Medicaid under the Affordable Care Act. Check with your state’s Medicaid office to confirm your benefits.

Access to Health Care

  • No. Since implementation of the Affordable Care Act (ACA), insurance companies are no longer allowed to charge more or deny coverage based on a pre-existing condition—such as being HIV-positive. (The only exceptions are plans that have been “grandfathered in” under the ACA.) Further, insurers are prohibited from cancelling or rescinding coverage because of mistakes made on an application, such as being unclear about your HIV status, and can no longer impose lifetime caps on insurance benefits.

    The only factors that health insurance companies are allowed to consider in pricing a plan, besides which level of coverage you select, are these: tobacco use, age, area where you live, and whether you are enrolling individually or as a family.

  • If you make between 100% and 400% of the Federal Poverty Level (in 2023, for example, that amounts to $14,580-$58,320 for individuals and $30,000-$120,000 for a family of four), the Affordable Care Act (ACA) provides subsidies to help cover the costs of insurance premiums. In states that have expanded Medicaid under the ACA, it is available to everyone below 138% of the Federal Poverty Level (or $20,120 for an individual). For a calculator to determine whether you qualify for subsidies, visit this website: http://www.health care.gov/lower-costs/.

  • Many people living with HIV can access health coverage through Medicaid by being considered to have a disability. Medicaid covers roughly 40% of the population of non-elderly adults living with HIV. Generally, Medicaid must cover certain preventative services, including “medically necessary” HIV testing and PrEP. (But see PrEP section on Braidwood v. Becerra at # 21 below). Additionally, roughly 40 states and DC cover routine HIV testing.

    Eligibility requirements may vary by state because Medicaid is a state-administered program, though Medicaid programs must offer coverage to certain categories of people (for example, pregnant women and children under the age of 19 living below 138% of the Federal Poverty Level. Many states have expanded their Medicaid coverage to include all adults (meaning, coverage is not limited to disabled adults) with incomes at or below 138% of the Federal Poverty Level ($20,120 for individuals as of 2023). In addition, as of June 2023 40 states and DC have expanded Medicaid coverage for almost all adults with incomes at or below the Federal Poverty Line. To determine if you qualify for free or low-cost coverage through Medicaid, visit the link below or contact your state Medicaid division for further assistance:

    https://www.medicaid.gov/about-us/beneficiary-resources/index.html#statemenu.

    If you are not eligible for coverage through Medicaid or your employer, you can apply for affordable private coverage through the Health Insurance Marketplace.

  • Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI) are both federally-funded programs administered by the Social Security Administration (SSA) for individuals with disabilities.

    Eligible participants in SSI receive monthly payments from SSA. The eligibility requirements for SSI include: (1) being a United States citizen, national, or some non-citizens and live in the United States or territories; (2) be over 65 years old, blind, or disabled, and (3) have limited income and resources as defined by Social Security. The separate benefit known as SSDI pays benefits to eligible recipients and some family members as a form of insurance. To qualify for SSDI, you must: (1) have worked in positions covered by Social Security; and (2) have a medical condition that qualifies as a “disability” for Social Security.

    Because SSA uses a strict definition of disability, not all medical conditions automatically qualify as a disability. For both SSI and SSDI, individuals over the age of 18 are considered disabled if: (1) they suffer from a “medically determinable” impairment (which can be either physical or mental); (2) the impairment prevents the individual from participating in “substantial gainful activity” (for 2023, that translates to work activity that earns more than $1,470 a month); and (3) the impairment is expected to lead to death or “has lasted or can be expected to last for a continuous period” of at least 12 months.

    If you are living with HIV and either undetectable or still able to participate in substantial gainful activity, you are not considered disabled for purposes of Social Security. While the determination is person-specific, the SSA lists several HIV symptoms sufficient to prevent substantial gainful activity. These include repeated bacterial, fungal, parasitic, or viral infections, dementia, diarrhea, neuropathy, gynecologic conditions, hepatitis, malnutrition, muscle weakness, neurocognitive issues, wasting syndrome, and other documented symptoms from HIV.

    To learn more about SSI and SSDI, please visit SSA’s website here: https://www.ssa.gov/benefits/disability/.

  • Unfortunately, those who are making less than 100% of the Federal Poverty Level are not eligible for subsidies under the ACA. This is because the Congress that enacted the ACA did not consider the possibility that the U.S. Supreme Court would strike down the provisions requiring states to expand Medicaid. In states with expanded Medicaid, everyone below 138% of the Federal Poverty Level is eligible for Medicaid, so no one below 100% of the Federal Poverty Level needs insurance through the ACA marketplaces or the subsidies provided to buy that insurance.

    To be eligible for Medicaid in a non-expansion state, a person must earn less than 100% of the Federal Poverty Level and be either disabled, a child or the head of a household that includes a child or children. (Note that the definition of “disabled” for purposes of Medicaid is different and harder to meet than the definition of a “person with a disability” under the Americans with Disabilities Act.) In these states, people who make less than 100% of the Federal Poverty Level but do not fit into one of the other categories are neither eligible for Medicaid nor eligible to receive subsidies under the ACA.

    One possible alternative is to enroll in a “Catastrophic” health plan, a health plan that meets all of the requirements applicable to other Qualified Health Plans but only covers three primary care visits per year before the plan’s deductible is met. To enroll in a “Catastrophic” plan, an individual must be under 30 years old or, if over 30, must meet an exemption. The two types of exemptions are: (1) affordability exemptions (applicable to individuals for whom the lowest-price coverage would cost more than 8.09% of the household income) and (2) hardship exemptions (for individuals who have experienced a financial or other hardship, including ineligibility for Medicaid due to living in a state without expanded Medicaid eligibility). For information about qualifying, visit this website: https://www.health care.gov/health-coverage-exemptions/forms-how-to-apply/.

    Sadly, individuals who do not qualify for either option above will need to seek other sources to pay for health care services.

  • Yes, you can obtain care through the Ryan White HIV/AIDS Program (RWHAP). RWHAP is the largest federal program focused on HIV and funds HIV care and treatment services for low-income people living with HIV, including medical care and support services. To qualify for HIV care and support through RWHAP, you must: (1) be diagnosed with HIV or AIDS; (2) be low income; and (3) have no health insurance or have insurance that doesn’t pay for the care you need. For more information on available care and services, visit this website: https://ryanwhite.hrsa.gov/hiv-care/services.

  • No, insurers must accept all such payments. After Lambda Legal litigated a Louisiana case against one insurer that threatened to stop accepting such payments, the federal government issued new regulations requiring health insurers to accept payments from the Ryan White HIV/AIDS Program and certain other federal programs. If your health insurer is refusing to accept your payments, please contact Lambda Legal’s Help Desk.

  • No, your health insurance company is not permitted to tell your employer which medications you are taking, regardless of the cost or the health condition. Employers are allowed to review the claims history of their employees as a group for the purpose of evaluating an insurance plan as a whole and comparison shopping, but employers are never supposed to have access to individual claim information.

    If an employer has asked you to complete a form regarding your health care needs for purposes of its comparison shopping for health insurance plans, you should verify that the form will go directly to the insurance broker or other independent third party handling the employer’s purchase of health care and that the information on the form will not be shared with the employer until it has been aggregated and stripped of all individually identifying information.

  • Collect as much information as possible about the change in policy. For instance: When does the change go into effect? Is just one particular HIV medication affected, or are there other medications this insurance plan is not covering? Why is the employer discontinuing coverage? Is there a way to obtain a waiver so that you can continue receiving this medication?

    After you have obtained as much information as possible, contact Lambda Legal’s Help Desk. Under current law, insurers are allowed to provide coverage for some HIV medications and not others, but there are certain minimum requirements they must meet. Lambda Legal and others are advocating for a policy that will require insurers to cover all non-experimental HIV medications.

    If your employer or insurer discontinues coverage of your medication, there are resources available for certain qualifying groups of individuals:

  • Generally, the Affordable Care Act (ACA) requires private insurers to cover HIV-related treatments and prevention technologies (like PrEP). However, a federal court in Texas recently decided that the ACA’s mandate requiring that all private insurers cover HIV-related treatments or prevention technologies violates a federal law called the Religious Freedom Restoration Act. See Braidwood Management Inc. et al. v. Becerra et al., No. 4:20-CV-00283, — F. Supp. 3d —, 2023 WL 2703229 (N.D. Tex. Mar. 30, 2023). The implications of this decision are still uncertain as the matter is under appeal before the United States Court of Appeals for the Fifth Circuit. However, as of fall 2023, the decision allowing employers to deny insurance coverage for PrEP is on hold as the litigation continues. Be sure to research the most current status of the case and any rulings.

HIV Discrimination in the Workplace

  • No, except in a few rare circumstances, it is against the law for someone to fire you or not hire you for being HIV-positive. Usually, an employer cannot even ask you if you’re HIV-positive.

    However, both during the hiring process and once an employee is on the job, an employer may be able to ask medical or disability-related questions so long as they are 1) asked of all employees entering the same job position after making a job offer but before starting work; or 2) are related to the job and consistent with business necessity. For example, an employer may ask questions that are disability-related to either make sure that the employee can do the essential functions of their job (or in other words, the core duties of that position) or make sure that the employee does not pose a direct threat to the health or safety of others in the workplace. Still, an employer cannot refuse to hire someone or fire them for being HIV-positive if they are able to perform the essential functions of that job and do not pose a significant risk to others that cannot be managed with reasonable steps.

    Further, if a worker with HIV requests reasonable accommodations because their symptoms require a modification of job duties, the employer may ask disability-related questions while the employer works with the employee to find a reasonable accommodation. An employer cannot legally fire an employee or refuse to hire them because a reasonable accommodation is needed or has been requested.

  • Under federal law employers may not fire or refuse to hire someone with HIV or another disability if the person can perform “essential” functions of the job. This ensures that the person will not be considered unqualified simply because of his or her inability to perform marginal or incidental job functions.

  • The essential functions of a job are its core duties—basically, the reason the job position exists. For example, an essential function of a typist’s position is the ability to type; an essential function of a school bus driver’s position might be the ability to drive and regular availability to work from 7-10 a.m. and 2-5 p.m. Monday through Friday.

    Factors regarding whether a particular function is essential include, but are not limited to:

    • The employer’s assessment as to which functions of the job are essential;
    • Written job descriptions used to advertise the position or while interviewing applicants for the job;
    • The amount of time spent on the job performing the function;
    • The consequences of not requiring the current employee in the position to perform the function;
    • The work experience of past employees in the job; and/or
    • The current work experience of employees in similar jobs.
  • Employment decisions can’t be based on the fear that someone might be more ill in the future; only an employee’s current situation can be considered.

    Similarly, fear of higher costs for medical insurance or workers’ compensation costs cannot affect an employer’s decision about whether to hire or fire someone.

  • No, an employer cannot fire or refuse to hire an individual based on their fear for the safety and health of others because a current or prospective employee has HIV. However, the employer can refuse to hire or fire an individual if the employer can establish through objective, medically supportable (and current) methods that there is a current, direct threat (meaning, a significant risk) to other employees’ health or safety that cannot be eliminated or reduced through reasonable accommodations. There are few, if any, occupational settings in which a person’s HIV presents a significant risk to the health or safety of others in the workplace. Further, an employer cannot refuse to hire or fire an individual because of a slightly increased risk of harm to others.

  • In addition to the direct prohibition against discrimination, the two features of the ADA that play an important role for people living with HIV are workplace confidentiality and the right to reasonable work accommodations.

    Workplace confidentiality

    The ADA outlines specific rules about providing confidentiality and privacy for job applicants and employees with HIV. First, applicants do not have to disclose their HIV status to a prospective employer unless it affects their ability to perform the job. Second, employers are limited as to whether they can ever test for HIV or ask questions that would reveal the status of a prospective or current employee.

    Before making a job offer, an employer cannot test applicants for HIV or ask questions about an individual’s status. The employer may, however, ask about an applicant’s ability to perform job-related functions, for example an employer may ask if the applicant can lift a certain amount of weight for a package delivery position.

    Once an employer makes a “conditional offer” (one conditioned solely on passing a physical or medical exam), the employer can require that a prospective employee take an HIV test, but only if the test is required uniformly of all persons considered for that position.

    An employer can ask general questions about a prospective employee’s health prior to making a conditional offer of employment, but still only if the questions are not likely to reveal a disability. Furthermore, employers can’t use an employee’s answers to screen out people with disabilities unless the exclusion is based on inability to perform job-related functions even with a reasonable accommodation.

    After an employee is hired, an employer cannot require a medical examination or ask about an employee’s medical information unless the examination or questioning is “job-related and consistent with business necessity.” Further, an employer cannot ask questions about an employee’s disability or health unless the employer is evaluating the employee’s request for accommodation or is concerned about the ability of an employee to perform the essential functions of his, her, or their job.

    All information and records collected by an employer about an applicant’s or employee’s medical condition must be kept confidential by the employer.

    Reasonable work accommodations

    Another useful federal safeguard for employees living with HIV is the right to reasonable accommodations. Depending on the circumstances, an employer’s reasonable accommodations could include approving a flexible schedule, modifying the non-essential job duties, or agreeing to other adjustments that allow a disabled employee, including one with HIV, to perform the essential functions of a job.

    Under the ADA, whether an accommodation is “reasonable” and must be provided depends on the specific job, the extent of the employee’s needs and the employer’s size. An employer has the right to ask for information to make sure the employee is disabled and in need of reasonable accommodations. However, it may be possible for a medical professional to establish the need for an accommodation without revealing a particular diagnosis, such as HIV. An employer need not provide an accommodation that is overly expensive or too administratively difficult.

  • Many states also prohibit disability discrimination, and some states expressly prohibit discrimination against anyone with HIV. In addition, some cities offer specific protections for workers with HIV. Though the Americans with Disability Act (ADA) is quite protective of people living with HIV, it only applies to employers with 15 or more employees, so there may be features of state law that make filing a claim under one of those laws the best option (for example, some state laws apply to smaller employers than the ADA covers).

    However, employers with fewer than 15 employees only have to follow the applicable state law, so if a state law provides a narrower definition of disability, the employer may follow only the state law until they reach the 15-employee requirement.

    If you’re a service member, a federal court has found that the Constitution and the Administrative Procedure Act (APA) bar your exclusion from enlistment and for consideration and promotions through commissioning processes as well as for deployment opportunities, save for a few rare deployment locations based on host-nation requirements. Additionally, the Constitution and the APA bar your discharge based solely on HIV-positive status.

  • Before making an official complaint about discrimination at work, an employee should consider contacting their employer’s human resources department. If the employee’s HR department cannot resolve the issue or does not respond appropriately, the employee may consider taking legal action.

    An employee who believes that they have experienced HIV discrimination at work can consider filing a complaint with the Equal Employment Opportunity Commission (EEOC). Individuals are also entitled to bring private lawsuits under the ADA for disability discrimination but must first file a Charge of Discrimination with the EEOC. A Charge of Discrimination is a signed statement alleging that the employer engaged in employment discrimination and requesting that the EEOC act. For some cases, another individual, organization, or agency could file the discrimination claim on behalf of the employee to protect their identity. There are time limits for filing a charge that can vary greatly, but in general a charge must be filed with the EEOC within 180 calendar days of the date of discrimination. The EEOC is usually required to notify the employer that a charge has been filed against it.

    If the employer is a public entity or a State or local government, the applicant or employee may consider filing a complaint with the U.S. Department of Justice (DOJ). If the employer is the Federal government, there is a different EEOC process.

    If you need help determining the best way to make an official complaint about HIV discrimination at work, please contact Lambda Legal’s Help Desk. If you are seeking resources to help you navigate the complaint process with a local or state enforcement agency, please contact the Legal Help Desk.

  • That depends on your personal circumstances and specific work situation.

    Some people living with HIV may not be able to safely disclose their HIV status at work, due to persistent HIV-related stigma and discrimination—or an employer’s sheer lack of information. Consider consulting a lawyer before revealing information at work.

    If your HIV status is known to your employer, the federal Americans with Disabilities Act (ADA) generally requires employers to keep confidential HIV-related information they collect and prohibits employers from discriminating against people with HIV. However, for disclosures made outside of the protections of the ADA (for instance, disclosure to a co-worker or disclosure in a workplace with fewer than 15 employees), your employer or other employees may not be obligated to keep information about your HIV status confidential. Therefore, it’s important to be careful about discussing your HIV status and keep in mind that: 1) although there are legal protections against employment discrimination based on HIV status, there are also some gaps in what those laws cover; 2) confidentiality can be impossible to regain once information becomes public; and 3) discrimination may be hard to prove.

    If someone disclosed your confidential HIV status to other co-workers or people in your workplace without your consent, you may be able to hold that person legally accountable for breaching your right to privacy. Liability varies by state, so consider contacting an attorney before taking any further action.

  • Common workplace accommodations made for people with HIV include time off for doctor’s visits and flexible work schedules for employees who experience fatigue at certain times of day.

    To request a reasonable accommodation as a person living with HIV, follow these steps:

    • Approach your immediate supervisor first.
    • If your immediate supervisor does not respond favorably, you may need to enlist the support of your human resources department or a union representative, if you have one.
    • Keep in mind that not everyone you speak to in your workplace may be held legally accountable to protect your confidentiality, especially those who are neither in Human Resources nor in a chain of supervision over you.
    • If your employer asks for proof that you are disabled, you may want to consult an attorney before making a disclosure about your HIV status.
    • Your employer may consider it sufficient for your doctor to explain in writing that you have a “chronic condition” that causes you to need the accommodation you are requesting, without specifying what that condition is. However, some employers do require their disabled employees to provide a medical diagnosis.

    Consider the following when making a request:

    • Be specific. Put your request in writing and use the word “accommodation.”
    • Be strategic. Always emphasize how productive the accommodation(s) will make you.
    • Be realistic about your request. Your employer’s obligation to accommodate you will depend on the particular facts of your situation, such as the size and type of business, the job at issue and the type of accommodation you are requesting.
    • Ask your employer to be prepared to address any backlash you receive from coworkers who feel you are getting “special treatment.”
    • Be pro-active. Bear in mind that you will not be in a good position to negotiate if you request a reasonable accommodation retroactively. For example, you will be in a better position if you ask your employer ahead of time for flexibility about your arrival time, rather than waiting until you are approached by your supervisor for arriving late to work frequently, and then saying, “You need to let me come in late because I have a condition that makes it very difficult for me to be on time.”

    Employers can determine accommodation requests on a case-by-case basis. This means that a particular accommodation request may be considered reasonable in one case and unreasonable in another. Request an accommodation based on your specific needs and not based on accommodations your employer has or has not granted for others in the past.

  • Lambda Legal’s HIV Project has used the Americans with Disability Act (ADA) and (in the case of Taylor v. Rice) the federal Rehabilitation Act to win policy changes and settlements in a range of cases, including these key victories:

    Matter of Matthew Cusick and Cirque du Soleil

    • Matthew Cusick, a performer who was fired by Cirque du Soleil for having HIV, won a record cash settlement and forced Cirque to initiate companywide antidiscrimination training and alter its employment policies worldwide concerning people living with HIV.

    Taylor v. Rice

    • A U.S. State Department employee who was barred from the Foreign Service forced the Department to adopt new hiring guidelines and lift its ban against hiring people with HIV as Foreign Service Officers.

    Hickman v. Donna Curry

    • A sandwich shop employee who was fired for having HIV received a settlement with terms that include company-wide policy changes.

    Roe v. City of Atlanta

    • A qualified man who was barred from joining the Atlanta Police Department (APD) because he has HIV lost before the trial court. However, Lambda Legal teamed up with his lawyer and took his case on appeal, got the trial court decision reversed, and secured a sizable settlement and citywide policy changes.

    Harrison v. Roe and Wilkins v. Austin

    • The Department of Defense (the world’s largest employer) must allow enlistment of HIV positive individuals

HIV Discrimination Outside the Workplace and Housing Discrimination

  • In addition to protecting people from employment discrimination, the Americans with Disabilities Act (ADA) also protects people living with HIV from discrimination in accessing government services or service in places of public accommodation.  Public accommodations are places that offer goods or services to the general public.  They include places like restaurants, hotels, shops, gyms, and private schools.

    The Section 504 Rehabilitation Act of 1973 prevents discrimination based on HIV status (and other disabilities) by institutions or programs receiving federal funding.

    The Fair Housing Act prevents housing discrimination against people living with HIV.

    The Patient Protection and Affordable Care Act (the “ACA” or “Obamacare”) has provisions designed to prevent discrimination against people living with HIV within the health care system and health insurance industry.

    Many states—though not all—also have nondiscrimination laws that mirror the protections of the ADA and/or the Fair Housing Act.

  • The ADA prohibits public accommodations from discriminating against you based on your disability, and it requires public accommodations to provide people with disabilities an equal opportunity to access the goods or services they offer.  A public accommodation is a private business or other institution that serves the public.  This includes places like restaurants, hotels, shops, gyms, and private schools.  Private clubs and certain religious organizations are not considered public accommodations.

    Section 504 of the Rehabilitation Act does not apply to all public accommodations, but only applies to programs conducted by federal agencies or receiving federal financial assistance. But similar to the ADA, the Rehabilitation Act prohibits such entities from discriminating against you based on your disability, and it requires these programs to provide people with disabilities an equal opportunity to participate in, and have access to, program benefits and services.

    Through a lawsuit under either the ADA or Rehabilitation Act, you may be able to get a court order requiring the public accommodation or federally sponsored program to stop discriminating against you.

    Monetary damages are not available under the ADA for public accommodations discrimination. (The ADA’s workplace provisions do allow for such damages.) If the government sues on your behalf, however, it may be able to obtain monetary damages for you. To see if the government is willing to file a lawsuit to address your situation, contact the U.S. Department of Justice Civil Rights Division.

    Monetary damages are also not available to enforce the anti-discrimination provisions of the Rehabilitation Act.

  • Housing discrimination on the basis of your HIV status is illegal. The Fair Housing Act and Section 504 of the Rehabilitation Act prohibit it.

    Housing discrimination may include:

    • Refusing to rent to someone because of their HIV status;
    • Charging someone more rent because of their HIV status;
    • Evicting someone because of their HIV status;
    • Threatening, intimidating, or interfering with someone’s housing rights because of their HIV status;
    • Asking about the nature or severity of someone’s HIV status;
    • Refusing to make reasonable accommodations for a person living with HIV

    Refusing to accept housing vouchers.

  • Housing discrimination because of HIV status is illegal. This means that, among other things, a rental agent, landlord, or homeowner cannot refuse to rent or sell housing, cannot set different terms for renting or purchasing housing, and cannot deny housing or otherwise make housing unavailable based on someone’s HIV status.

    From the moment you think you are being discriminated against because of your HIV status, start documenting what is happening. This includes:

    • Creating a detailed log of incidents of discrimination (the log should include where and when the incident occurred, what happened, who said and did what, and who else was there);
    • Collecting documents and emails related to the discrimination;
    • Inviting a friend to participate in future interactions with the other party;
    • Asking the other party to communicate via email or in writing so you have a written record.

    Collecting and creating as many of these types of evidence as possible will make it easier for an attorney to evaluate your situation and potentially to resolve the problem for you.  It can also increase the chances of winning your case should it end up in court.

    To have your situation evaluated, reach out to an attorney, a legal organization or a government agency that addresses housing discrimination. For guidance on where to turn, contact Lambda Legal’s Help Desk.

  • State and local source of income laws may prohibit discrimination against renters and homebuyers based on the source of their income. Under these laws, landlords may not refuse to rent to people using Housing Choice Vouchers to help pay their rent. However, not all jurisdictions have such anti-discrimination laws, and federal law does not provide comparable protection.

    If you believe you have been discriminated against in the process of obtaining housing, you should report the discrimination both to the U.S. Department of Housing and Urban Development and to the authorities in your local area. To find out how to file a report locally, search “how to report source of income discrimination in [your state/city].”

  • From the moment you think there may be something wrong, start documenting what is happening. This includes:

    • Creating a detailed log of incidents of discrimination (the log should include where and when the incident occurred, what happened, who said and did what, and who else was there);
    • Collecting documents and emails related to the discrimination;
    • Inviting a friend to participate in future interactions with the other party;
    • Asking the other party to communicate via email or in writing so you have a written record.

    Collecting and creating as many of these types of evidence as possible will make it easier for an attorney to evaluate your situation and potentially to resolve the problem for you.  It can also increase the chance of winning your case should it end up in court.

    To have your situation evaluated, reach out to an attorney, a legal organization, a government agency that addresses housing discrimination, such as the U.S. Department of Housing and Urban Development or the Department of Justice, which may handle certain disability discrimination claims with respect to assisted living contexts.

    For guidance on where to turn in your situation, contact Lambda Legal’s Help Desk.

  • Government assistance is available in some circumstances to address the housing needs of people living with HIV. The U.S. Department of Housing and Urban Development offers a program called the Housing Opportunities for Persons With AIDS (“HOPWA”) Program, which is the only federal program that addresses the housing needs of low-income people living with HIV and AIDS. HOPWA funds are provided to metropolitan areas and cities, as well as to nonprofit organizations, to establish housing and social services programs. To be eligible to live in HOPWA-funded housing or to receive HOPWA-funded assistance, an individual must be classified as low-income (at or below 80 percent of the area’s median income) and be medically diagnosed with HIV or AIDS. HOPWA eligibility also extends to an eligible individual’s family.

    Many non-profit organizations and cities have established local HOPWA-funded housing assistance programs or other programs to assist with housing assistance for people living with HIV. In addition, some states and local jurisdictions provide their own housing assistance programs for individuals living with HIV. Government assistance for housing, not specific to people living with HIV, may also be available.

    This link provides details on housing assistance programs by zip code, including details about local HOPWA programs.

    To find out if you are eligible for a HOPWA program—or to apply—contact your local Public Housing Agency by visiting this website. In addition, you can determine what income falls at or below 80 percent of your area’s median income by visiting this website.

Privacy, Confidentiality and Disclosure

  • 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.

  • Threats to disclose your HIV status by loved ones, friends, and acquaintances is a difficult situation to navigate, particularly the social repercussions of an unauthorized disclosure. While the threats are typically meant to harass, private individuals—like family and friends—are generally not bound by privacy laws after you voluntarily disclose your status. However, legal protections to protect you against discrimination may be available. Some of the legal protections available to individuals with HIV may include: (1) protections in housing contexts under the Fair Housing Act; (2) protections in hiring and employment matters under the Americans with Disabilities Act; (3) protections under state domestic violence laws from domestic violence by partners that use your status to control you; (4) protections against other types of discrimination under state and local laws.

    Lambda Legal is a national organization that assists with cases likely to change the law or that will affect numerous individuals or a large institution. While we do not have the resources to represent most individuals, it is important to connect to a local HIV organization or attorney who can guide you through any laws or legal protections that apply to your specific case. Additionally, there are several HIV Support Groups that operate nationwide that might be able to support you in your care. You can find HIV Support Groups for support and care: https://www.verywellhealth.com/best-hiv-support-groups-4843445

    If you are experiencing domestic violence, contact the National Domestic Violence Hotline for support and resources: https://www.thehotline.org/

  • 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.

  • 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.

  • HIPAA applies primarily 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 response 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 and are seeking resources to help you navigate these options, please contact Lambda Legal’s Help Desk.

  • Lambda Legal can’t tell you the best way to handle such an inquiry because, for example, 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 only if 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.

  • 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).

    According to the EEOC, there are a few limited circumstances in which employers may have to disclose medical information about applicants or employees. Information may be disclosed where: (1) it is needed to provide a reasonable accommodation; (2) an employee needs emergency treatment or requires assistance due to a medical condition; (3) persons investigating compliance with the ADA and similar state and local laws request information; and (4) the information is needed for workers’ compensation or insurance purposes.

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

  • 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.

  • 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 all provide various rights to privacy in the health care setting.

    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 response 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 and are seeking resources to help navigate your options, please contact Lambda Legal’s Help Desk.

  • 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.

HIV Criminalization

  • In many states, there are laws that require you to disclose your HIV-positive status to a sexual partner before having sex with that person. And even in some states without such laws, people have nonetheless been prosecuted under general criminal laws (such as “assault” or “reckless endangerment” laws) for not disclosing their HIV-positive status before a sexual encounter. The type of sexual contact that triggers the obligation to disclose varies from state to state.

  • In most states with an HIV-specific criminal law, your viral load is not a factor in whether you must disclose your HIV-positive status; a few states, however, do take condom use into account. Also, at least two states (Iowa and Tennessee) now explicitly consider whether a person is taking steps, such as being on medication and using a condom, to prevent or greatly reduce the chances of transmission. In this situation, it is not viral load itself but the effort to reduce the likelihood of transmission that affects whether conviction will occur.

    Lambda Legal is working to reform the HIV criminalization laws and halt HIV-based prosecutions in the states where they are still occurring. In the meantime, disclosure to a partner—regardless of viral load—may make prosecution less likely.

  • In most states, whether or not your sexual partner asks about your HIV status has no direct effect on your legal obligation to disclose. The legal obligation generally arises without the question even being asked.

    That said, if a prosecution occurs and a jury or judge hears that the person asked and was lied to about HIV status, it likely will affect the outcome of that case—whether in the verdict or in sentencing.

  • Unfortunately, no. Unless you are prepared to sue that person under a strong state law—and there are many challenges in pursuing that course of action (see Privacy, Confidentiality and Disclosure) – there are very few limitations on how this information could be shared and/or used against you. It is a horrible situation, but the system is not set up to protect the person living with HIV in these circumstances. Lambda Legal is working to eliminate the criminal laws requiring disclosure, so that people living with HIV are not placed in this vulnerable position.

  • Some people save an electronic communication, such as a text message, that they can show the person saw before the sexual encounter. One can prove the person saw the message by asking them to respond to it in the affirmative, acknowledging that they know about your HIV status.

    Other options include having the person sign something acknowledging that you disclosed, or sharing your status to the person in front of a third party—such as your doctor—who might testify on your behalf, if it came to that.

    You could also record yourself disclosing your status, but you would want to get the person’s consent to the recording or ensure that you are recording in a state that allows for recording a person without their consent. And you would need to make sure the person responded in a manner that allows them to be heard and recognized on the recording.

    We recognize that none of these options are very practical—and certainly they are not romantic or erotic—but they could help save someone from years in prison. The point is to be aware that simply telling the person, with no means to prove disclosure, is not very helpful later in court if there is a dispute.

  • At the moment, the vast majority of these criminal laws require that the defendant knows their status at the time of the sexual encounter. A couple of states (Indiana and North Carolina) require notification of previous sexual partners after testing HIV-positive, but we are unaware of anyone who has been criminally prosecuted for failing to do so.

  • Don’t engage in any further conversations with the person about the alleged nondisclosure—not even to explain or to apologize or to try to convince them not to move forward with their complaint.

    Don’t talk to the police, no matter how much they try to convince you that it is in your best interest and that they are only trying to help you out of a jam.

    Don’t talk to anyone who is not subject to attorney-client privilege, because anyone with whom you talk about this could be called as a witness against you.

    Do find yourself a criminal defense attorney, preferably someone local who can handle your case if charges are filed. If you can’t afford an attorney or find one willing to work for free or at a reduced rate, refuse to talk to the police until a public defender is provided.

  • If you engaged in an activity involving a substantial risk of transmission (i.e., something riskier than oral sex or sex with a condom), you are not already on PrEP, and it is within 72 hours of the potential exposure, you may want to see about obtaining post-exposure prophylaxis (PEP) medication from your doctor or another health care provider.

    You may want to learn, however, whether your HIV-positive sexual partner is taking medications and has a suppressed viral load. According to medical researchers, if that person does have a suppressed viral load—which is defined as 200 copies or less of the virus per milliliter of blood—then there is very little risk of transmission.  If you learn the person has a suppressed viral load, you should advise any health care provider you consult of this fact, because it may affect whether the provider recommends PEP for you.

    Lambda Legal also suggests people consider their own choices and responsibility for maintaining sexual health in light of their personal tolerance for risk. If you are planning an activity that you would not engage in with someone you knew to be HIV-positive, then you may want to reconsider whether you should engage in that activity with anyone.

    In terms of sexual transmission, the only people who one can know for sure are HIV negative are those who became celibate, tested negative a month later and have remained celibate ever since. That means whenever you have sex with someone you think is HIV negative, using whatever precautions you choose, you may be placing yourself at the same degree of risk as you would by having sex using those same precautions with an HIV-positive person. In fact, it is possible that the risk may actually be higher with someone you believe is HIV negative: newly infected people are significantly more infectious, and many people living with HIV are on medications that render them essentially non-infectious.

Adoption, Foster Care and Custody

  • Living with HIV should have little effect on your ability to be a foster parent or to adopt a child. The only limited exception is if living with HIV makes you too ill to care for a child.  Because HIV is not transmitted through the type of household contacts involved in childcare, one’s HIV status is not relevant to one’s qualifications as a foster or adoptive parent. Lambda Legal helped change the regulations on foster parents living with HIV in Nevada,  and if you encounter a regulation or agency that excludes individuals living with HIV from adoption or foster care, please contact our Help Desk.

  • Your HIV status alone should not affect a court’s custody decision. Because HIV is not transmitted through the type of household contacts involved in childcare, one’s HIV status is not relevant to one’s ability to parent.  If a person is having serious HIV-related health problems that interfere with the ability to care for a child, that could affect awarding custody to that person. However, that type of impairment should be considered in the same way as any other physical impairment, including with respect to its duration and actual effect on the ability to care for a child. If your ex-spouse is utilizing your HIV status in a custody case as an argument against custody, consult with a family law attorney in your area.

  • The person with whom custody of children is shared should not use your HIV status against you to limit your interactions with the children or your partner (the children’s parent). Further, your HIV status should not affect the custody arrangement or your ability to interact with your partner or the children in any way.

    Because HIV is not transmitted through the type of household contact involved in childcare, one’s status as an individual living with HIV is not relevant to a person’s ability to parent or to the safety of a child with whom the person has normal, everyday interactions in a household setting. Consult with a family law attorney in your area if the other parent or custodial guardian initiates court proceedings.

Immigration and Asylum

  • No, you should have no trouble at all. Until October 2009, the U.S. prevented people living with HIV from traveling to the U.S. or immigrating without first obtaining special permission, but Lambda Legal helped to get rid of that ban on travelers and immigrants living with HIV. HIV status sometimes affects the government’s decision about whether an immigrant is likely to become a “public charge” (someone dependent on public assistance), and changes in presidential administrations have affected what is considered a “public charge” for purposes of immigration. However, this provision is not currently being used to keep people out of the country.

  • While living with HIV can be a basis for obtaining asylum in the United States, it is difficult to win an asylum claim solely based on HIV status.

    To successfully bring an asylum claim in the United States, the asylum seeker bears the burden of showing each of the following: (1) a well-founded fear of persecution; (2) based on past persecution or risk of future persecution if returned to the country of origin; (3) because of the asylum seeker’s membership in a particular social group; and (4) the persecutor in the country of origin is a government actor or a non-government actor that the government is unable or unwilling to control. If you decide to seek asylum, you must apply within one year of your entry into the United States.

    Hardship alone is not enough to establish asylum; the asylum seeker must prove “persecution.” For example, it is not enough to show that you cannot access needed HIV treatments. You must show that you have been persecuted or you fear being persecuted due to your HIV status in your country of origin.

  • If your HIV status changes after the one-year deadline to file an asylum claim, you may still be able to file a claim if you can demonstrate a “changed” or “extraordinary” circumstance that affects your asylum eligibility.

    To show that the changed circumstance applies to your case, you must establish that: (1) a changed circumstance exists; (2) the changed circumstance materially  effects your eligibility for asylum; and (3) you filed the application within a reasonable period of time after the changed circumstance.

    To show that the extraordinary circumstance applies to your case, you must establish that: (1) an extraordinary circumstance exists; (2) the extraordinary circumstance directly relates to your failure to timely file your asylum claim; (3) you did not intentionally create the extraordinary circumstance, through your action or inaction, in order to establish the exception; and (4) you filed the application within a reasonable period of time after the extraordinary circumstance.

    If you are able to establish a changed or extraordinary circumstance justifying the delay in applying for asylum, you must meet the asylum requirement and prove that you fear persecution in your home country because of your HIV status.

  • Anyone in immigration detention is supposed to have access to health care services. This includes screening, prevention, diagnosis, and treatment. All important medical information should be communicated in a language that each detainee can understand. Detainees should receive continuous care from the time of entry to the time of transfer, release or removal. They should also be able to request health services on a daily basis and to receive timely follow-up to such requests.

    Detention facility staff members are supposed to provide detainees living with HIV with medical care consistent with national recommendations and guidelines. They should also ensure that all medications approved by the Food and Drug Administration (FDA) for the treatment of HIV/AIDS are readily available. Medical and pharmacy staff must ensure that newly admitted detainees are able to continue treatments without interruption. Upon release, the detainee must be provided with a 30-day supply of their HIV medication(s).

    Furthermore, detention facilities are supposed to have written plans to ensure confidentiality regarding a person’s HIV status and medical condition.

    (For a full description of the standards that apply, see The U.S. Immigration and Customs Enforcement (“ICE”) National Detention Standards 2019.)

    Unfortunately, many detention facilities do not live up to these standards. Some people living with HIV experience gaps in care and treatment as a result of being detained. They may experience delays in receiving HIV medications when they are admitted or transferred to a facility. They may not have access to appropriate care. Or they may have their right to confidentiality violated during diagnosis or treatment of HIV/AIDS—which can result in harassment or discrimination by others.

    If you or someone you know is being detained and experiencing this type of mistreatment—or mistreatment based on their sexual orientation or gender identity—contact Lambda Legal’s Help Desk for more information and resources on how to address the problem. Also, Lambda Legal’s “Your Right to HIV Treatment in Prison or Jail” has specific information about your rights to HIV-related care and steps you might take if your rights are being disregarded.