Legal Rights and Obligations

Federal Laws That Apply to HIV Infection

Section 504 of the Rehabilitation Act of 1973 protects all citizens of the United States against discrimination on grounds of disability.

Your rights to employment under federal law include protection against discrimination in recruitment, hiring, job assignment, sick leave, or other benefits. You also have the right to request that your employer provide you with reasonable accommodations on the job. Reasonable accommodations are aids, services, and job modifications designed to al­low you to carry out the essential functions of your job. For a person with HIV infection, reasonable accommodations may include flexible work hours, rest periods on the job to accommodate fatigue, and time off for medical treatments.

Your rights to health care include protection against discrimination in services offered by hospitals, nursing homes, hospices, or other health care providers. Your rights to social services include protection against discrimination in receiving welfare, Medicaid, Medicare, and other so­cial service programs.

Additional information about civil rights under federal law may be obtained by writing or calling the following (if you phone, be prepared to wait on the line a long time):

U.S.

Civil Rights Division

950 Pennsylvania Avenue, N.W. Disability Rights Section—NYAV Washington, D.C. 20530 Voice: 1-800-514-0301

TTY/TTD: 1-800-514-0383 www.ada.gov/adahom1.htm

U.S. Equal Employment Opportunity Commission 1801 L Street, N.W.

Washington, D.C. 20507

Voice: 1-800-849-4230 TTY/TTD: 1-202-663-7002

U.S. Department of Health and Human Services Office for Civil Rights

200 Independence Avenue, S.W. Washington, D.C. 20201

Voice: 1-800-368-1019

TTY/TTD: 1-800-537-7697

http://hhs.gov/ocr/

People who feel that their rights under the federal antidiscrimination laws have been violated should file a complaint within 180 days with the Office for Civil Rights, U.S. Department of Health and Human Ser­vices, 200 Independence Avenue, S.W., Washington, D.C. 20201; this office will then forward your complaint to the civil rights office in your region. You can also file a complaint online at http://hhs.gov/ocr/ discrimhowtofile.html, or by e-mail to OCRcomplaint@hhs.gov. Or you can write directly to your regional office; find the address of your re­gional office by calling 1-800-368-1019 or online at http://hhs.gov/ocr/ discrimhowtofile.html. Complaints should include

• Your name, address, and telephone number.

• If you are filing a complaint for someone else, include that person’s name, address, and telephone number.

• The name and address of the organization or person you believe discriminated against you.

• How, why, and when you believe you (or the person on whose be­half you are filing the complaint) were discriminated against.

• Any other information that would help OCR understand your complaint.

The representative of the Office for Civil Rights will begin an inves­tigation. If discrimination is found, the Office for Civil Rights will ask the service provider or organization to correct the complaint voluntarily. If this request is unsuccessful, the service provider or organization may have its federal funding terminated, or other legal action will be pursued.

On December 1, 1991, the federal government passed a law called the Patient Self-Determination Act. This law requires hospitals to edu­cate every patient admitted into the hospital, into home care, or into a long-term care facility about advance directives. Advance directives include living wills and durable powers of attorney. Living wills and durable powers of attorney are documents written by you when you are mentally competent to provide for your medical care should you become incapable of making your own health care decisions. (See “Putting Your Affairs in Order,” below.) The exact advance directives that are avail­able to you depend on which state you live in; the federal law requires only that you be informed of those advance directives that your state happens to recognize. Check with your hospital or your lawyer about which advance directives your state has and which are best for you. Also check with your hospital about their policies about advance directives.

State Laws That Apply to HIV Infection

Most states also have laws that protect their citizens against discrimi­nation on grounds of handicap. Whether HIV infection is included in a state’s definition of handicap depends on the state: the laws that apply to people with HIV infection, needless to say, vary from state to state. The state laws against discrimination on grounds of handicap are some­times different from the federal laws. Some people with HIV infection find it useful to pursue claims of discrimination under either federal or state laws, or both.

(Note: Some laws use the word handicap; others use the word dis­ability. The two words mean the same thing.)

In general, state laws against discrimination govern such issues as your right to public accommodations, your right to housing and em­ployment, your right to confidentiality, and your medical rights.

Your right to public accommodations. Public accommodations are more important than they sound. A public accommodation is any place open to and serving the public. Exactly which places are defined as pub­lic accommodations vary from state to state: some states include doc­tors’ offices, for instance, and some do not. Depending on the state, then, public accommodations can include schools, doctors’ offices, hospitals, hospices, barber and beauty shops, nursing homes, funeral homes, pub­lic transportation, restaurants, and hotels. Any place defined as a pub­lic accommodation cannot discriminate according to race, sex, creed, color, or (depending on the state) handicap. In most states, AIDS is de­fined as a handicap. In some states, having HIV infection but not AIDS may also be defined as a handicap.

Although all laws governing the right to public accommodations are similar, they will differ in detail according to the state. In some states, for instance, beauty shops are not allowed to treat someone with a contagious disease, and since HIV infection is contagious, those states could conceiv­ably bar a person with that virus from a beauty shop. This is, however, an obviously unrealistic use of the word contagious, since the type of expo­sure that occurs in beauty shops carries no risk of transmitting HIV.

To find out the laws in your state, ask a lawyer. Lawyers can also draw up wills and help sort out problems with the Social Security sys­tem and with insurance companies.

Another source of information about discrimination is an agency called, in some states, the state human relations commission, and in other states, the state civil rights commission. If you think you have been denied public accommodations because of your HIV status, file a com­plaint with the state human relations or civil rights commission, and they will investigate. You will not need a lawyer to file a complaint. You will, however, need to be a pest, because agencies move slowly. You also need to remember that filing such a complaint will involve giving up the con­fidentiality of your HIV status.

Your rights to housing and employment. Your rights to housing and employment are the same as your right to public accommodations. In general, you have a right to whatever housing you can afford and what­ever job you can carry out. In most states, refusing someone housing or employment because they have AIDS is illegal. Most states have laws forbidding discrimination on grounds of disability; and, in most states, AIDS is defined as a disability. Whether HIV infection is also defined as a disability depends on the state: ask a lawyer. Therefore you may not be refused housing because of the disabling effects of AIDS. As long as you can carry out your job, you may not be refused employment or fired because of the disabling effects of AIDS.

You also have a right to expect your employer to make reasonable accommodations to your disability. If your job involves heavy lifting, for instance, and you tire easily, you can ask your employer to reassign you to a less strenuous job. The general principle is that you have a right to expect your employer to modify your job in ways that do not compro-

mise your usefulness to the job. Again, as with public accommodations, if you think you have been forced out of a job or housing because of your HIV status, file a complaint with the state human relations or civil rights commission. If the complaint involves employment discrimina­tion, and if you win, you are entitled to back pay, attorney’s fees, and damages.

Your right to confidentiality, your right to privacy, and your obligation to disclose. The Health Insurance Portability and Accountability Act, or HIPAA, states that your medical record, including your HIV status, is confidential. Your physician must protect your confidentiality; physi­cians can disclose information about patients only under certain condi­tions. In fact, except for physicians, no one with access to your HIV sta­tus—laboratory staff, hospital staff, nurses, secretaries—is allowed to reveal your name.

As with any law, your right to the confidentiality of your medical records has conditions. When you apply for insurance, you usually au­thorize the company to request release of your medical records. Your HIV status must be included in those records: medical records are, by definition, complete medical records.

If you check into a hospital, you implicitly authorize access to your medical records by all your health care providers at that hospital, in­cluding other physicians, nurses, dentists, social workers, and physi­cian’s assistants. If your physician refers you to a specialist and you ac­cept the referral, you implicitly grant the specialist access to your medical records.

If you apply for a job, depending on the state, your prospective em­ployer might be able to request your medical records, but your records will be released only if you authorize it in writing. Prospective employ­ers may not require you to authorize release.

Physicians must report every case of AIDS they treat to the state pub­lic health department. Some states require physicians to report all blood tests positive for HIV infection. Most states require that this reporting be done either by name or by such other identifiers as Social Security number. The state public health departments are prohibited from re­vealing your name. In the unlikely event that your name is revealed, most states give you some sort of legal recourse—to a lawsuit, for instance. States are required to report cases of AIDS to the federal government, but to report the cases as statistics, not by name.

HIV infection also confers certain obligations on you. You have a moral and legal obligation to notify anyone you have put at risk for con­tracting HIV infection. In general, this includes sex partners and people with whom you have shared needles. Health care workers might be obliged to inform the institutions in which they work. If you refuse to notify those you have put at risk, or continue to place others at risk with­out due warning, they can sue you.

If you refuse to inform anyone you put at risk for infection, your physician may be required to inform him or her. The American Medical Association has advised physicians of that obligation. In many states, the physician’s obligation to inform is law; other states may leave it to the discretion of the physician. Thus, whether your physician is required to reveal your name and diagnosis without your authorization depends on the circumstances and varies from state to state.

Once the obligation to inform those placed at risk is discharged, however, you have no further legal or moral obligation to tell anyone else about your HIV status. You have no obligation to tell your em­ployer, your landlord, your psychologist or psychiatrist, your family, your friends, your co-workers, or your neighbors. Lawyers often advise their clients who have HIV infection to tell as few people as possible. Except for those whom you are obliged to tell, tell only the people you love and who will help you and respect your privacy. No one else needs to know.

Your medical rights. One of your principal medical rights is to in­formed consent. That is, you have a right to an explanation of any treat­ment or procedure before it is performed on you, an explanation of the risks of that treatment or procedure, and an explanation of the alterna­tives to that treatment or procedure. “Treatment or procedure” means any drugs, any tests, researches, or surgeries—anything that involves something foreign entering your body. “Risks” means material risks, that is, anything that can reasonably be expected to happen. Your doc­tor is not necessarily obligated to inform you of an improbable risk, a one-in-a-million chance.

Informed consent also means that you may refuse any treatment or procedure. Anyone who attempts the treatment or procedure without your consent—assuming you are mentally competent to give consent— can be sued on grounds of battery. You have a right to refuse food and water. You also have the right to refuse medication. Your right to refuse treatments, procedures, or medication can be overruled only if you are incompetent. Incompetent means that you are unable to comprehend what you have been told and are therefore unable to make decisions. In principle, the courts, guided by the advice of the physician, decide when someone is incompetent. In practice, the court system takes a long time, and competence is decided by two concurring physicians, one of whom is your physician-of-record.

You may request treatments, procedures, or medication, but you may not demand them. You may request transfer to another physician or different medical facility. You have a right to see your medical rec­ords. Your medical records are, however, the property of the hospital. As such, the hospital may dictate under what circumstances and in whose presence you may see your medical records. You have a right to a copy of your medical records. You may not remove the original rec­ords from the hospital without the hospital’s consent. In accordance with the Health Insurance Portability and Accountability Act, or HIPAA, you have the right to make additions or corrections to your medical rec­ords.

Hospitals, as public accommodations, may not refuse to treat you on the grounds that you have HIV infection. Some hospitals, however, limit the kinds of treatment they offer and may refuse to treat anyone who requires services they do not offer. Any managed care organization or health maintenance organization (HMO) to which you belong has a legal contract with you that outlines the rights and obligations of both parties.

In a hospital, you may request to be assigned another physician. If other physicians are available, the hospital is obliged to grant your re­quest.

Some states have laws that prohibit a physician from refusing pa­tients on the basis of race, sex, creed, color, or disability. In most states, HIV infection is defined as a disability. However, many physicians do not consider themselves competent to care for people with HIV infec­tion and will refuse care—rightly—on this basis. Others are simply too busy to accept new patients. The first time you see a private physician, he or she may refuse to treat you. If you have previously been accepted as a patient by that physician for other medical conditions and the two of you have an ongoing relationship, she or he may still refuse to treat you, but may not abandon you. Not abandoning you means that your physician must help you find another physician who can provide the care needed.

Similar rules apply to dental care. Many dentists are uncomfortable caring for people with HIV infection. The ethics of dental practice and most state dental practice acts dictate that the dentist is obliged to pro­vide continuing care to established patients, or at least refer them to an­other dentist who can provide more specialized care.

A Note on Lawsuits

The right to file lawsuits is a right no one can take away from you. But lawsuits often take years to settle. Some people decide not to file a suit because they do not want to take the time. Others decide not to file be­cause their HIV status would then become public record. Many people go ahead and fight and win suits.