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JAMA
Unfinished Business
July 21, 2015
Twenty-five years ago when the Americans with Disabilities Act (ADA) was enacted, human immunodeficiency virus (HIV) infection and AIDS were significant sources of anxiety and public concern. There was only one transiently effective treatment, and HIV was the third leading cause of death in the United States among adults aged 25 to 44 years and the leading cause of death among black men and Hispanic men in this age group. Indeed, whether to include people living with HIV/AIDS under the umbrella of protection being established by this legislation was part of the congressional debate around the law.
Today, people with HIV who are diagnosed early, engaged in care, and able to continue treatment may live a normal lifespan.1 A broad array of effective, simple, and well-tolerated antiretroviral therapies (ART) are now available for treatment. Effective ART also has changed the prevention landscape as data have shown that viral suppression substantially decreases the risk of HIV transmission. Additionally, tenofovir/emtricitabine has been proven effective in preventing infection as preexposure prophylaxis. Despite remarkable progress in both treatment and prevention, however, stigma and discrimination are still pervasive, and the ADA remains an essential cornerstone of protection for people living with HIV.
ADA RESPONSE TO EVOLVING FORMS OF DISCRIMINATION
Before the ADA was enacted, employer concerns about the productivity and reliability of persons living with disabilities, including HIV, led to discrimination in hiring. Harsh stigma and discrimination against people with HIV coupled with the lack of highly effective treatment caused many individuals to decide that the risk-benefit calculus was weighted against being tested for and potentially diagnosed with HIV. The ADA helped change that by offering protection against discrimination in key domains of life such as employment and access to public services (including health care) and requiring “reasonable accommodations” of an individual’s disability.
After the introduction of effective ART in 1995, concern about productivity subsided, only to be replaced by concerns about the cost of insuring people taking expensive pharmaceutical regimens. Improved quality and length of life with newer therapies raised questions about whether people were protected under the ADA if their HIV was not adversely affecting their regular life activities, and mixed rulings from the Supreme Court ensued. In its first decision interpreting the scope of the ADA’s protection for people living with HIV, the Supreme Court ruled in favor of coverage of those with asymptomatic infection in the Bragdon case in 1998.2 In the Sutton case, a mere year later, however, the Court ruled that employers could consider the ameliorative effects of mitigating measures when assessing whether one is disabled.3The ADA Amendments Act of 2008 ended this ambiguity by explicitly covering people who have an impairment that, if untreated, would substantially impair their immune function.
HIV STIGMA WORSENS HEALTH OUTCOMES
Stigma is associated with poorer health outcomes. Stigma refers to the social devaluation of people who are different, generally based on certain characteristics, behaviors, or life circumstances. Persons with HIV may experience stigma from multiple coexisting attributes beyond HIV infection, including sexual and gender identity, use of injection drugs, and race or ethnicity. Persons who fear being stigmatized because of HIV infection or homosexuality, for example, often delay getting diagnosed and present to care with advanced disease. Likewise, once diagnosed, they delay getting into care or beginning drug therapy because these actions may “out” them, thus risking social or economic abandonment, intimate partner violence, or discrimination in the workplace, church, or school.
Stigma, however, still exists. A recent survey found that black men and Latino men who have sex with men experience higher levels of stigma associated with HIV/AIDS, same-sex sexuality, and gender performance than with race/ethnicity.4 In the same survey, individuals exhibited lower levels of stigma when they lived in jurisdictions with a hate crimes law, employee nondiscrimination policies that include sexual orientation, and jurisdictions that allow legal same-sex marriage or civil unions. The effects of discrimination are so substantial that in 2010 the Joint United Nations Programme on HIV/AIDS elevated “zero discrimination” to the third pillar of its strategic plan to end AIDS, on par with “zero infections” and “zero AIDS-related deaths.”
UNFINISHED BUSINESS
A purpose stated in the text of the ADA is to “to invoke the sweep of congressional authority, including the power to enforce the Fourteenth Amendment and to regulate commerce, to address the major areas of discrimination faced day-to-day by people with disabilities.” The Fourteenth Amendment to the US Constitution establishes due process protections and forbids states from denying any person in their jurisdiction equal protection of the laws. This purpose provides a broader civil rights frame under which other laws and policies can be deployed to achieve the ADA’s vision.
Expanded insurance coverage because of the Affordable Care Act (ACA) has the potential to contribute to a substantial reduction in HIV transmission and to enable people with HIV infection to live long and productive lives. In early 2014, it was estimated that nearly 70 000 people living with HIV in medical care would gain new Medicaid or private insurance coverage if every state were to expand Medicaid eligibility under the ACA. Further, if coverage patterns for those not in care mirrored those in care, an additional 124 000 people with HIV could gain coverage if all states expanded Medicaid.5
Expanded insurance coverage also has the potential to increase HIV testing and promote earlier access to care and ART. Insurance coverage for preexposure prophylaxis facilitates use of this new intervention to decrease transmission. Fulfillment of the promise of the ACA, however, has been stymied by discriminatory insurance practices. The ACA prohibits plan benefit designs that discourage enrollment of persons with significant health needs, such as people with HIV. Yet some health plans have placed all recommended ART medications on the highest cost tiers, demanding extraordinary cost-sharing on the part of the patient and making lifesaving medications unaffordable for many. An analysis of such “adverse tiering” plans in 12 states with federal marketplaces found that a person with HIV in such a plan would pay more than $3000 more per year than a person enrolled in another plan, even after accounting for lower plan premiums and the ACA’s annual out-of-pocket limit.6 Federal rules now indicate that such tiering practices may be discriminatory, but this and other problematic practices continue. For example, requiring cumbersome prior authorization and imposing prescription quantity limits create obstacles that may result in discontinuity of treatment and subsequent viral resistance. Restricting patient access to only certain health care organizations and clinicians that are members of a health plan’s network is yet another way that insurers may discourage enrollment of persons with illnesses like HIV.
Achieving the ADA’s vision of addressing discrimination experienced by people living with HIV faces additional challenges.
Ambiguity About What Constitutes a “Direct Threat”
An exception to the ADA can be made when an individual constitutes a “direct threat” to the health or safety of others, but this requires showing a “significant” risk of harm. However, many courts have weakened the standard by which “significant” risk is demonstrated, expanding what was intended to be a narrow exception. Therefore, it should be clarified that one is a direct threat when there is a demonstrable and significant risk of transmission, and not just any risk, which could include potential events that are exceedingly rare.
State Laws That Criminalize HIV Nondisclosure
Thirty-three states have laws that criminalize nondisclosure of HIV-positive status and 38 states use those or general criminal statutes to prosecute those living with HIV. An emblematic case involved a man in Iowa initially sentenced to 25 years in prison following a one-time sexual encounter in which the man had an undetectable HIV viral load, a condom was used, and no transmission occurred.7 Such prosecutions ignore current evidence about the effect of ART on transmission, perpetuate misinformation about transmission, and reinforce stigma. To date, criminalization laws have not been shown effective in curbing HIV transmission, and concerns about their potential adverse effects on public health led officials from the Centers for Disease Control and Prevention and the Department of Justice to recommend that such laws be reexamined by states.8
Inadequate Civil Rights Protections for LGBT People
Two-thirds of new HIV infections in the United States are among gay and bisexual men, and young gay and bisexual men are the only group in which new infections are increasing. Transgender women also are at high risk for HIV infection. The ADA explicitly excludes sexual orientation and gender dysphoria from its scope, yet it can be difficult to separate anti-HIV bias from anti–lesbian, gay, bisexual, and transgender (LGBT) bias. Because anti-LGBT discrimination occurs frequently, however, it may be possible, for example, for employers and landlords to discriminate against the LGBT community, which is heavily affected by HIV. Therefore, more must be done to protect LGBT people from discrimination in employment, housing, health care, and law enforcement, so as not to provide legal immunity to actions directed at groups heavily affected by HIV. The recent executive order prohibiting LGBT employment discrimination by federal contractors is an important step forward.
The prevention, detection, and treatment of HIV are far better today than 25 years ago, in part because of the ADA. However, ending the epidemic will require not only the best medicine but also the best social and legal environments in which people with HIV, and those at risk of infection, can live openly and safely, participate fully in all aspects of life, and access health care without fear of stigma and discrimination. The vision and text of the ADA are indispensable tools for creating this reality.