Barb Cardell only discovered she was HIV-positive a few weeks before she was fired from her job as an executive chef.
It was 1993, and the then 29-year-old Cardell had been infected for two years without knowing. It would be years before the U.S. Food and Drug Administration would approve the first protease inhibitor, a now widely used antiviral drug to treat advanced HIV infection. Since life expectancy in those days was short for people living with HIV, doctors gave her only five years to live.
For the most part, Cardell was open about being HIV-positive. She didn’t know why she shouldn’t be. But a few days after discovering her status, her employers at the Wisconsin restaurant where she worked told Cardell they didn’t want her to talk about her status because of “the fear and stigma about eating food somebody who is HIV-positive cooked,” she said.
She was fired within a month.
The situation devastated Cardell—so much so that she was too traumatized to look for new work. “It was really hard. I loved being in a restaurant. I expected to open my own restaurant,” Cardell, who is now board chair of Positive Women’s Network-USA, a women-focused HIV advocacy group, told Rewire.
She said she learned “fairly quickly” after discovering she was HIV-positive that her status would prevent her from obtaining the health and life insurance needed to secure a business loan. “Not only did I lose a job I loved, but I also lost what I had been planning on [as] my next adventure,” she said.
Pervasive Workplace Discrimination
Cardell says her termination is a case of deliberate workplace discrimination based on her HIV-positive status. Such discrimination is a pervasive issue for the more than 1.1 million people living with HIV in the United States, occurring since the earliest days of the HIV/AIDS epidemic, says Catherine Hanssens, executive director of the Center for HIV Law and Policy.
Like Cardell, people who are HIV-positive from “every imaginable kind of job”—including health care, food service, and law enforcement—have experienced workplace discrimination in one form or another, Hanssens says.
For instance, recently the U.S. Equal Employment Opportunity Commission (EEOC) filed suit against Maxim Healthcare Services, a multi-state health-care and wellness service agency, on behalf of an HIV-positive man identified as John Doe. According to the EEOC, Maxim Healthcare violated the Americans With Disabilities Act (ADA) when it refused to hire Doe to sit with patients at a Pittsburgh Department of Veterans Affairs medical facility because of his HIV status.
“People have been worried about their place of employment finding out that they’re positive because people are fired, people are not hired, people are stigmatized in the workplace, their status is shared inappropriately,” said Cardell. The John Doe case is “sadly more common than it is uncommon.”
The case against Maxim Healthcare is one of 25 the EEOC has filed involving disability discrimination on the basis of HIV and AIDS over the last ten fiscal years—and one of four still in litigation, according to EEOC data obtained by Rewire. Between 1997 and 2013, the EEOC received more than 3,900 complaints alleging ADA violations based on a person’s HIV status—a number of which were resolved before reaching the litigation stage.
Nearly a third of those complaints have resulted in merit factor resolutions, which include settlements, withdrawals with benefits, successful conciliations, and unsuccessful conciliations. The remaining charges were either closed for administrative reasons or the EEOC found no reasonable cause.
The majority of EEOC lawsuits filed involve employees who were terminated from their position after the discovery of their HIV-positive status; the second most common charge is the refusal to hire due to a plaintiff’s status, the EEOC data show. Big name, multimillion-dollar companies are among the defendants: Butterball, Popeye’s Chicken, Kaiser Permanente, a McDonald’s franchise, and Dollar General, for instance.
“If you look back at cases going back to the [1980s], and staying within the current decade, you see people who have lost their job cleaning and taking care of the produce section in a supermarket or lost their job being a dental technician” because they were HIV-positive, Hanssens said.
According to research culled by Positive Women’s Network-USA from a National Working Positive Coalition survey, of the 84 percent of HIV-positive respondents who were employed at the time of their diagnosis, 81 percent reported losing employment. Of that 81 percent, 64 percent reported that their HIV status had played a role in their lost of employment.
“An Unfounded Phobia”
Despite the overwhelming body of HIV research over the last few decades, inaccurate myths continue to persist about the disease—which disproportionately affects Blacks, Latinos, transgender women, and gay and bisexual men of all races and ethnicities in the United States. It’s these myths, driven by “an unfounded phobia” of HIV transmission and HIV-positive individuals, says Hanssens, that are at the center of workplace discrimination against people living with HIV.
The range of “justifications” cited by employers for discriminating against people living with HIV, based on their HIV status, is sweeping, says Cardell. Among the reasons: an HIV-positive person is too expensive to provide insurance coverage to, they may miss too much work for medical issues, or fellow workers are uncomfortable working with an HIV-positive person.
“Just awful discriminatory stuff has been cited,” said Cardell, “and people think that is something that justifies them choosing not to hire somebody who is HIV-positive.”
There’s also the worry—an unfounded one—that an HIV-positive worker may infect others through medical equipment or handling food. According to the Centers for Disease Control and Prevention (CDC), only certain bodily fluids can transmit HIV: blood, semen and pre-seminal fluid, vaginal secretions, and breast milk.
“The common denominator … is a gross misunderstanding or fear on the employer’s part about the actual ways HIV is transmitted, the risk that HIV will be transmitted, and what it means to live with HIV,” Hanssens said. “The likelihood that you will spread HIV while cutting lettuce is equivalent to the likelihood that you will spread cancer by cutting lettuce. It just won’t happen. It can’t happen.”
What it means to live with HIV has changed dramatically over the last two decades, thanks to the widening availability of antiviral drugs and antiretroviral therapies used to treat and manage the disease. For example, a 20-year-old person living with HIV in the United States or Canada who is on treatment can expect to live into his or her early 70s—a life expectancy nearing that of the general population—according to recent research.
Most HIV-positive people are now able to work and live “really healthy” lives, says Cardell. But since being open about their HIV status at work could threaten their economic livelihood, HIV-positive people often will not advocate for themselves and their rights, she says.
That’s because much of what is lost because of workplace discrimination—financial stability and access to quality health care and safe housing—are the same socioeconomic factors that drive the inextricable link between poverty and the prevalence of HIV infection.
Recent CDC statistics show that the prevalence of HIV among people living below the poverty line is two times greater than those living above it (2.4 percent, compared to 1.2 percent), with the highest HIV rates among people with an annual household income of less than $10,000.
Treatment for HIV is expensive; it can range from $2,000 to $5,000 a month, with the majority spent on antiretroviral medications. Without insurance or access to medical benefits programs, the exceeding costs puts care out of reach for many people living with HIV.
Hanssens notes that HIV-positive workers who are in low-wage positions are most affected by workplace discrimination in terms of both economic security and judicial recourse. For low-income HIV-positive people, obtaining the legal counsel necessary to fight workplace discrimination may either be financially out of reach or inaccessible through community legal services, which have been “radically defunded” over the years, she said. (There is no cost to filing an EEOC complaint, nor is legal counsel needed to do so. There are also no fees if the EEOC decides to litigate a case on a plaintiff’s behalf.)
“Many of the structural barriers [that put people] at risk for HIV in the first place” keep them from fighting back against workplace discrimination, said Cardell.
That’s why Cardell considers John Doe, the plaintiff in the Maxim Healthcare case, a “hero.” By fighting back against workplace discrimination, despite the blocks stacked against HIV-positive workers, he “gives rise to hope for so many other positive people to a) think that they could go ahead and get a job, and b) that they’re HIV status doesn’t matter.”
“In fact, most times people are applying for jobs where their HIV status doesn’t matter,” Cardell said. “But [employers] make it about that. That’s bad science.”