Disability Discrimination in America: Title and subTitle BreakHIV/AIDS and Other Health Conditions

Persons living with human immunodeficiency virus (HIV) infection and the acquired immunodeficiency syndrome (AIDS) have experienced discrimination since the beginning of the epidemic—children excluded from schools and day care, health care workers refused the right to practice, and patients denied access to medical and dental treatment.^{1 - 4} The Americans With Disabilities Act of 1990 (ADA) and its predecessor, section 504 of the Rehabilitation Act of 1973, were thought to have proscribed these and other forms of discrimination.

The National Commission on AIDS, in 1991, said that the "landmark" ADA "with the inclusion of protections for people with HIV disease is a victory worth celebrating."⁵ That celebration was not long-lived. Initially, a consensus emerged among the courts and administrative agencies that the ADA covers persons at all stages of HIV infection, ranging from asymptomatic infection to AIDS as defined by the Centers for Disease Control and Prevention (CDC).⁶ The judiciary, however, beginning in the mid-1990s, began to tear down this consensus. Several courts decided that asymptomatic HIV infection is not automatically a disability within the meaning of the ADA.^{7 - 9} The judiciary also severely constricted the definition of disability for other medical conditions so individuals with serious diseases were not covered by the ADA.¹⁰

In the first AIDS case it has considered, the Supreme Court held that Sidney Abbott, a woman with asymptomatic HIV infection, was protected against discrimination by the ADA, and the Court indicated that all people with HIV infection may be protected.^{11 - 13} This article analyzes the significance of Bragdon v Abbott for persons with HIV/AIDS and other health conditions and reports the results of a 50-state survey of disability discrimination law to assess the state-level protections afforded persons with disabilities.

In 1994, Sidney Abbott disclosed her HIV infection to her dentist, Dr Randon Bragdon, at his private office in Bangor, Me. Dr Bragdon performed an examination and determined that Ms Abbott had a dental cavity. While it was Dr Bragdon's customary practice to fill cavities in his office, he informed Ms Abbott that he would fill her cavity only in a hospital setting. Any additional costs beyond Dr Bragdon's standard fees would be Ms Abbott's responsibility.

The ADA proscribes discrimination against persons with disabilities in employment, public services, public accommodations, and telecommunications. Sidney Abbott sued under Title III of the Act (Public Accommodations): "No individual shall be discriminated against on the basis of disability in the full and equal enjoyment of the goods, services, facilities, privileges, advantages, or accommodations of any place of public accommodation."¹⁴ The term public accommodation is defined to include a "professional office of a health care provider."¹⁵

The ADA's definition of disability is important because individuals must first establish that they are "disabled" before they can obtain antidiscrimination protection. If the disability does not fit within the statutory definition, even the most harmful discrimination is shielded from judicial scrutiny. A disability is defined as a physical or mental impairment that substantially limits 1 or more of the individual's major life activities, a record of such impairment, or being regarded as having such an impairment.¹⁶

In its decision, the Supreme Court inquired whether Sidney Abbott's asymptomatic HIV infection constituted a (1) "physical impairment" that (2) "substantially limits" 1 or more of the (3) "major life activities." The scientific evidence was sufficient to satisfy the Court that asymptomatic HIV infection is a physical impairment with immediate, constant, and detrimental physical effects.

A more troubling issue for lower courts has been how to characterize the "major life activity" that is affected by asymptomatic HIV infection. The Court found that the life activity on which Ms Abbott relied, her ability to reproduce and to bear children, constitutes a major life activity: "Reproduction and the sexual dynamics surrounding it are central to the life process itself." The Court rejected the idea that Congress intended the ADA to cover only those aspects of a person's life that have a public, economic, or daily character. Reproduction and sexual intimacy cannot be regarded as any less important than working and learning.

Finally, the Court found that HIV infection "substantially limits" the major life activity of reproduction. First, the risk of sexual transmission of HIV impedes reproductive choices. The Court cited studies showing that 20% or more of male partners of infected women contracted HIV.¹⁷ Second, the risk of perinatal transmission limits reproduction. Certainly, antiretroviral treatment of the mother and infant significantly reduces this risk,¹⁸ but the Court found that, even with mitigating treatment, the risk is sufficiently substantial to limit reproduction.

Chief Justice Rehnquist, joined by Justices Scalia and Thomas, in dissent, argued that persons with HIV infection "are still entirely able to engage in sexual intercourse [and] give birth to a child if they become pregnant." Decisions whether to engage in these activities, Rehnquist argued, are a matter of personal choice. Justice Kennedy, writing for the majority, however, refused to allow the definition of "disability" to "turn on personal choice."

The Court confined its inquiry to the major life activity raised by the parties, reproduction, but strongly signaled that its decision should not be read to focus narrowly on reproduction. Instead, Justice Kennedy emphasized that asymptomatic HIV infection imposes substantial limitations on many major life activities: "Given the pervasive, and invariably fatal, course of the disease, its effect on major life activities of many sorts might have been relevant to our inquiry. . . . [HIV infection has a] profound impact on almost every phase of the infected person's life." HIV infection, indeed, has a transcendent effect on a person's life: the disease and the medical regimen can have debilitating physiological and psychological effects; the social stigma transforms the way a person is seen in the family, at work, and in the community; and the person's health and life span potentially are severely impacted. As Justice Ginsburg said in her concurring opinion, HIV disease "inevitably pervades life's choices: education, employment, family and financial undertakings, . . . and the ability to obtain health care."

The Bragdon decision was important not only because of its definition of a disability but also because of its discussion of the "direct threat" doctrine under the ADA. The ADA permits adverse treatment, such as a decision not to provide medical or dental services, if the person poses a "direct threat to the health or safety of others."¹⁹ A direct threat is defined as "a significant risk to the health or safety of others" that cannot be eliminated by modification of policies, practices, or procedures. A "significant risk" is to be determined by an individualized assessment of the mode of transmission, probability of transmission, severity of the harm, and duration of infectiousness.^{20 - 21} Risk assessments should never be made on the basis of generalizations, stereotypes, or irrational fears.^{22 - 23}

The significant risk standard is determined from the perspective of the person who refuses the treatment or accommodation, and the person who refuses to treat or accommodate bears the burden of proving that the risk is significant. Before Bragdon, uncertainty existed about how to evaluate the scientific and medical evidence in risk assessments. The Court, in a ruling that will have far-reaching implications, held that health care professionals who refuse to treat persons with disabilities deserve no special deference. The health care professional's state of mind (ie, a good faith belief that a significant risk exists) does not excuse discrimination if there is no objective reasonableness to his or her actions.

In assessing the reasonableness of a professional's actions, the views of public health authorities such as the CDC and the National Institutes of Health receive special weight and authority. This is meaningful because pockets of the profession may overestimate the risk of infection. Public health authorities are charged with making objective assessments of health risks based on the most rigorous scientific evidence. The Court, moreover, placed into question the guidance provided by organizations of health professionals. Professional organizations, although respected sources of information, are not concerned solely with issues of statistical risk. Rather, their views take into account ethical and professional duties that may not be relevant factors under the ADA.

Dr Bragdon's discriminatory action was unsupported by objective scientific evidence: dentists, if they use universal infection control, are not at significant risk of occupational exposure to blood-borne pathogens, and treatment in a hospital would not reduce the already low risk of infection.^{24 - 25} Still, the Supreme Court sent the case back to the lower court (the First Circuit Court of Appeals) to determine if, at the time of his decision, Dr Bragdon's actions were supported by objective scientific evidence. The Court noted that the CDC guidance recommended universal precautions but did not explicitly state the level of risk if those precautions were taken. On December 29, 1998, the Court of Appeals ruled that, even at the time of his decision, Dr Bragdon's actions were not justified by reasonable medical evidence. The lesson to be learned from Bragdon is that health care professionals cannot make subjective assessments of risk but must rely on objective, scientific data.

The Bragdon decision makes it more likely that, in the future, the courts will find persons with asymptomatic HIV infection protected under the ADA. The question remains, however, whether other health conditions will satisfy the ADA's definition of disability.

The courts deciding cases under the Rehabilitation Act did not make the definition of disability into a strict obstacle for plaintiffs. The issues in these cases did not turn on whether an individual had a disability, but rather on whether the disability was the cause of the adverse action, or on whether the action was justified because a person's disability rendered that person unqualified for a job or ineligible for a service.^{26 - 27} The judicial approach in disability cases was similar to the approach when individuals claim discrimination based on their race or sex. When making decisions regarding race or sex discrimination, courts do not engage in searching inquiries into whether the individual is "really a woman" or "really an African American." Rather, these cases are often lost because individuals are unable to prove they have been discriminated against because of their race or sex.

Although numerous Rehabilitation Act cases failed to succeed on their merits, a wide range of health conditions were still considered disabilities²⁸ : (1) impairments in vision and hearing^{29 - 31} ; (2) mental illnesses and learning disabilities^{32 - 34} ; (3) diseases such as epilepsy,³⁵ multiple sclerosis,³⁶ cerebral palsy,³⁷ diabetes,³⁸ heart disease,³⁹ Parkinson disease,⁴⁰ and asthma⁴¹ ; (4) injuries to the spine, back, and limbs^{42 - 43} ; (5) carrier states, including hepatitis B⁴⁴ ; and (6) psychosocial and behavioral conditions such as alcohol and drug dependency.^{45 - 46}

Nothing during passage of the ADA suggested that courts would adopt a narrow definition of disability. However, in the years since the passage of the ADA, the legal landscape changed dramatically.⁴⁷ For example, of 110 ADA cases decided in 1995 and 1996 in which the definition of disability was raised, judges found that the individuals met the statutory definition in only 6 cases. These definitional barriers to access to the courts meant that "what was once touted as ‘the most comprehensive civil rights legislation . . . since the 1964 Civil Rights Act' has become increasingly narrowed to the point where it is in danger of becoming ineffective."⁴⁸

Courts deciding ADA cases have arrived at a restricted definition of disability through 2 principal methods. First, many courts analyze whether a plaintiff is substantially limited in the major life activity of working, even when the plaintiff's impairment logically can be better understood as a limitation in some other life activity. Once the argument focuses on limitations in working, courts often conclude that the impairment is not sufficiently limiting because there is a range of jobs that the individual can still perform. For example, in Ellison v Software Spectrum,⁴⁹ Phyllis Ellison was diagnosed as having breast cancer, had a lumpectomy, and received radiation treatment. During a reorganization of Ms Ellison's division at work, her job was eliminated. The court held that Ms Ellison was not disabled even though she experienced "nausea, fatigue, swelling, inflammation, and pain," because she was still able to work.

The idea that an individual must be unable to work in a range of jobs in order to meet the ADA's definition of disability inappropriately suggests that persons with disabilities are unable to function and work. This image of disability may make sense in certain limited circumstances—for example, when determining if an individual should receive cash payments under a disability benefit plan—but the ADA was designed to prohibit discrimination against people with disabilities who can work. For these individuals, a different concept of disability is desirable—one that recognizes that there is a spectrum of physical and mental impairments among all members of society, with many impairments not actually limiting the individual's ability to work effectively, but for the fears and biases held by others.

Even if an individual's claim that her impairment limits a major life activity other than working is accepted, there is a second method by which courts have restricted coverage under the ADA. Courts, prior to Bragdon, scrutinized whether the individual's impairment "substantially" limits a "major" life activity. For example, in Dutcher v Ingalls Shipbuilding,⁵⁰ the court concluded that a woman who had sustained serious injury to her right arm in a gun accident was not disabled under the ADA. The court reasoned that, although she had difficulty picking things up from the floor and holding things high or tight for long periods of time and was limited in repetitive rotational movements, she could still take care of the normal activities of daily living, such as eating, driving a car, and carrying groceries. Similarly, in Ryan v Grae & Rybicki,⁵¹ the court concluded that a woman with ulcerative colitis was not a person with a disability although she experienced frequent and painful diarrhea, stomach cramps, and rectal bleeding. The more expansive definition of disability in Bragdon may enable lower courts to find that a wider range of health conditions are disabilities.

A key element that often determines whether a person is considered disabled is whether the court takes into account the mitigating effects of treatment for a condition. The Equal Employment Opportunity Commission⁵² and Department of Justice⁵³ regulations clearly state that such mitigating effects should not be taken into account.⁵⁴ For example, persons with epilepsy or with insulin-dependent diabetes are disabled because, absent the medication, they would be limited in a range of life activities. The courts, however, are split as to whether the mitigating effects of medication should be taken into account in determining the existence of a disability.⁵⁵ Thus, in an ironic twist, although the ADA's goal is to provide antidiscrimination protection to individuals who, perhaps because they are taking medication, are qualified for jobs and eligible for services, such individuals are denied protection precisely because their medical conditions are under control. Bragdon decided that persons with HIV/AIDS are disabled even if, because of medication, they have no symptoms. While it did not resolve the question, arguably, the Court may have been suggesting that the mitigating effects of medication should not be taken into account in the definition of disability.

The third prong of the definition of disability—which protects individuals who are "regarded as" having a substantially limiting impairment—has thus far been applied quite restrictively by courts in interpreting the ADA. The third prong is thought to be very important because it protects those who are perceived as disabled and subjected to discrimination, even though they are not, in fact, substantially impaired. Under this prong, the simple act of terminating a person's employment or denying medical care because of a disability should result in a finding that the person was perceived as having a disability.

The courts, however, rarely find that a person who is not, in fact, disabled is protected under the third prong of the definition. Indeed, some courts suggest that the employer or service provider must actually believe that the person is substantially limited in a wide range of activities before receiving protection against discrimination. Thus, if an employer fires an employee because of prejudice, such as an exaggerated perception of infectiousness, there possibly would be no antidiscrimination protection. Consider the case of a hospital that dismisses an internist believing (wrongly) that he is infected with HIV. The hospital understands that the internist is able to work but may exaggerate the risk to patients. Although this internist should be entitled to protection under the third prong of the ADA's definition of disability, some courts may not recognize such protection.

Many researchers and policymakers have inquired whether the ADA protects persons with genetic carrier states (eg, a cystic fibrosis carrier), disease predispositions (eg, a marker for Huntington disease), and inherited diseases (eg, sickle cell disease). Certainly, a person with symptomatic disease, whether of genetic or other physiological origin, would be protected by the ADA if the disease caused a serious impairment of a major life activity. At the other extreme, an individual who carries 1 copy of the gene for a recessive disease has no physical disability, either current or future. Genetic carriers, therefore, could be covered only if the courts found them to have serious reproductive impairments or if they were regarded as disabled.

The most intriguing issue is whether genetic (eg, a positive BRCA-1 test result) and other predispositions to disease (eg, elevated cholesterol level, high blood pressure, or obesity) are covered disabilities. Arguably, if asymptomatic HIV infection is a disability, then other physiological indicators of future disease may be covered. This issue certainly occurred to the Justices in Bragdon. In his dissenting opinion, Justice Rehnquist insisted that if the majority opinion were taken to its logical extreme, it "would render every individual with a genetic marker for some debilitating disease ‘disabled' here and now because of some possible future effects." But that is exactly the construction preferred by Justice Ginsburg: "No rational legislator," she argued, "would require nondiscrimination once symptoms become visible but permit discrimination when the disease, though present, is not yet visible." Thus, under nondiscrimination theory, there appears to be no morally relevant distinction between adverse treatment of a qualified person based on future, as opposed to current, disease. In each case, the person would suffer adverse consequences because of his or her health status, despite the person's present abilities to perform the essential functions of the job.

The ADA envisages that states and localities have provided and will continue to provide antidiscrimination protection to persons with disabilities. Congress expressed its will not to interfere with these state statutes and local ordinances, provided they afford as much or greater protection against discrimination.⁵⁶ This survey examines antidiscrimination protection under state and local laws and how Bragdon affects the interpretation of these laws. The survey was conducted through library and electronic searches of disability statutes in the 50 states.

While federal antidiscrimination laws are comprehensive, state and local laws frequently provide important additional protection against discrimination. These laws, for example, often apply to employers of fewer than 15 persons (the minimum necessary to be covered by the ADA).

All states have statutes that prohibit discrimination on the basis of disability, and some also have HIV-specific statutes. Disability discrimination laws protective of individuals with HIV are also found at the local level, often in communities with large populations of persons living with HIV/AIDS (eg, New York, NY⁵⁷ ; Los Angeles, Calif⁵⁸ ; and San Francisco, Calif⁵⁹ ). Jurisdictions can be characterized by their antidiscrimination statutes as (1) states that incorporate the federal statutory definition of disability; (2) states that use definitions of disability other than the federal definition, often in broader, more protective ways than under the federal law; (3) states that have HIV-specific statutes, explicitly listing HIV or related conditions as a protected class; and (4) states that prohibit discrimination based on HIV test results (Table 1).

Forty states have at least 1 statute that incorporates the federal definition of disability in some form. Additionally, among the 22 states with partial protection based on HIV-specific statutes or statutes that prohibit discriminatory use of HIV testing, 15 also use the federal standard to define disability for at least some purpose.⁶⁰ As a result, the federal disability standard significantly affects the rights of individuals with HIV in at least 33 states. Although state courts have sole discretion to interpret state law, they will likely conform to the reasoning in Bragdon, given the similarity of statutory language and purpose. In some states, in fact, reliance on Bragdon and other definitive interpretations of federal law is statutorily mandated. California, for example, requires that state law must provide as much or more protection than is provided under the ADA.⁶¹

Fourteen states and Puerto Rico use a definition of disability in at least 1 nondiscrimination statute that either departs significantly from the federal standard or does not set forth any definition. While these statutes are open to varying interpretation, 8 of these states appear to define disability more broadly than does federal law,⁶² while 1 state, Texas, and Puerto Rico appear to define it more narrowly. The remaining 4 states do not include any comprehensive statutory definition.⁶³

The issue of whether asymptomatic HIV infection is protected for the purposes of antidiscrimination law is often answered by inclusion of that term in the statute itself. Fourteen states have statutes that include the term HIV infection or equivalent terminology denoting that symptomatic illness is not required. Of these 14 states, 5 include HIV as a disability with protection equivalent to that of other disabilities (Florida, Iowa, Kentucky, Nebraska, and New Jersey). The other 9 states offer more limited protection than that accorded other disabilities.⁶⁴ The 5 states in which HIV is defined as equivalent to other disabilities do so by simply incorporating HIV in the definition of disability.

North Carolina's HIV-specific statute purports to grant protection from discrimination, yet it authorizes many forms of discrimination. The law prohibits discrimination in continued employment, housing, public services, public accommodations, and public transportation.⁶⁵ Yet the statute permits HIV testing of job applicants, denial of employment to HIV-infected applicants, and HIV testing as part of employment-related annual medical examinations. Clinicians are also allowed to refuse treatment if they fear the risk of exposure. Under supremacy doctrine, the ADA—which prohibits such discrimination—overrides the state law.

In sum, of the 14 states with HIV-specific statutes, only 5 provide across-the-board protection; 8 provide coverage equivalent to other disabilities but limit that coverage to certain contexts or settings; and 1 state allows significant discrimination against persons living with HIV/AIDS. Finally, some HIV-specific state statutes cover HIV-infected individuals but not those perceived to be infected. If read literally, this could exclude from protection individuals who are discriminated against as a result of the erroneous belief that they are infected.

After a reliable test for HIV antibodies became widely available in 1985 and the evils resulting from the misuse of such testing became known, some states adopted statutes that prohibit the use of HIV test results for discriminatory purposes or prohibit HIV testing for purposes, such as employment, where testing is not fully voluntary. As a result, these "information restrictive" statutes prohibit discrimination based on knowledge of test results but may not prohibit discrimination based on actual HIV status or perceived status.

Twelve states have statutes that limit the use of HIV testing or HIV test results for discriminatory purposes.⁶⁶ Of the 12 states in this category, only Hawaii, Kansas, and Rhode Island impose broad restrictions on the use of such information in employment, public accommodations, housing, and other areas.⁶⁷ Six states impose restrictions only in the employment context.⁶⁸ Two states (Arkansas and Maryland) impose limits on HIV testing and the use of results in health care settings. One state, Ohio, prohibits discrimination by clinicians and in public (or publicly funded) services.

Although these testing and confidentiality statutes may offer protection in many instances, if read literally they provide significantly weaker protection than nondiscrimination enactments that define discriminatory conduct more broadly. For example, statutes that restrict use of HIV test results in employment may be interpreted by the courts not to protect a job applicant who is discriminated against because the potential employer, who is not aware of a specific test result, is aware only of rumors that the applicant is HIV infected.

The highest courts of appeal in only 3 states have addressed the issue of asymptomatic HIV infection. Two of those rulings involved state laws that were changed by subsequent legislation, so they are of limited precedential value.^{69 - 70} But in a third ruling, Raintree Health Care Center v Illinois Human Rights Comm'n,⁷¹ the Illinois Supreme Court held that HIV infection is a disability under the Illinois Human Rights Act, given that statute's definition of disability as "a determinable physical characteristic resulting from a disease."

Several state intermediate appellate and federal courts, applying state law, have addressed the issue of HIV infection as a disability.^{72 - 75} In the most prominent ruling, Beaulieu v Clausen,⁷⁶ the Minnesota Court of Appeals interpreted the state Human Rights Act to cover asymptomatic HIV infection in a case of dental care discrimination. The court concluded that individuals with HIV are materially limited in several major life activities, including social participation (because of emotional or psychological problems such as depression, as well as ostracism by others), sexual and reproductive activities, and employment.

Given our interpretation of relevant statutes, states can be placed into 3 categories: first, those with clearly established protection for HIV infection (either from HIV-specific laws, judicial precedent, or a combination of both); second, those in which coverage of HIV as a disability can be reasonably inferred, given the state reliance on the federal definition of disability and the Supreme Court's ruling in Bragdon; and third, those that provide little or no protection for persons with HIV infection.

To determine roughly the extent that the population of individuals with HIV is represented in the jurisdictions within these 3 categories, the proportionate distribution of individuals with AIDS⁷⁷ within these categories was calculated. Most significantly, because of widespread reliance on the federal definition of disability, roughly half (47%) of the persons with AIDS in the United States and its territories live in jurisdictions where there is now a reasonable basis to infer that asymptomatic HIV infection is a disability, given the Supreme Court's ruling in Bragdon. Additionally, the states in which protection for individuals with asymptomatic HIV infection can be said to be clearly established as a result of explicit statutory language or court precedent include an additional 29% of the reported AIDS cases. Jurisdictions that significantly limit or have no protections from HIV-related discrimination include only about 1% of the reported AIDS cases.⁷⁸ Thus, there is a clear national trend to protect individuals with asymptomatic HIV infection from discrimination not only under federal law, as now interpreted by the Supreme Court, but also to extend such protection under state and local laws as well.

During the last half decade, the judiciary has whittled away the protection afforded to persons with a broad range of injury and disease by constricting the definition of disability under the ADA. The Bragdon case may reverse this trend. Certainly, this decision suggests that persons living with HIV/AIDS will receive greater protection under the ADA. For persons with other health conditions for whom protection from disability discrimination has been in doubt—a woman undergoing chemotherapy for breast cancer, a child whose juvenile diabetes is controlled by medication, or a person with a genetic predisposition to Huntington disease—the tone and approach of the Supreme Court's decision may be instructive. If disability law is to take its rightful place among civil rights legislation in America, the principal judicial inquiry should not be whether individuals are, in fact, disabled, but whether they have experienced discrimination because of their health conditions, despite their qualifications for a job or eligibility for a service.