Analysis Human Rights

Stigma Drives Workplace Discrimination Against Workers Living With HIV

Annamarya Scaccia

Deliberate workplace discrimination based on a worker's HIV-positive status is a pervasive issue for the more than 1.1 million people living with HIV in the United States.

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.

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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.”

Roundups Politics

Campaign Week in Review: Trump Selects Indiana Gov. Mike Pence to Join His Ticket

Ally Boguhn

And in other news, Donald Trump suggested that he can relate to Black people who are discriminated against because the system has been rigged against him, too. But he stopped short of saying he understood the experiences of Black Americans.

Donald Trump announced this week that he had selected Indiana Gov. Mike Pence (R) to join him as his vice presidential candidate on the Republican ticket, and earlier in the week, the presumptive presidential nominee suggested to Fox News that he could relate to Black Americans because the “system is rigged” against him too.

Pence Selected to Join the GOP Ticket 

After weeks of speculation over who the presumptive nominee would chose as his vice presidential candidate, Trump announced Friday that he had chosen Pence.

“I am pleased to announce that I have chosen Governor Mike Pence as my Vice Presidential running mate,” Trump tweeted Friday morning, adding that he will make the official announcement on Saturday during a news conference.

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The presumptive Republican nominee was originally slated to host the news conference Friday, but postponed in response to Thursday’s terrorist attack in Nice, France. As late as Thursday evening, Trump told Fox News that he had not made a final decision on who would join his ticket—even as news reports came in that he had already selected Pence for the position.

As Rewire Editor in Chief Jodi Jacobson explained in a Thursday commentary, Pence “has problems with the truth, isn’t inclined to rely on facts, has little to no concern for the health and welfare of the poorest, doesn’t understand health care, and bases his decisions on discriminatory beliefs.” Jacobson further explained: 

He has, for example, eagerly signed laws aimed at criminalizing abortion, forcing women to undergo unnecessary ultrasounds, banning coverage for abortion care in private insurance plans, and forcing doctors performing abortions to seek admitting privileges at hospitals (a requirement the Supreme Court recently struck down as medically unnecessary in the Whole Woman’s Health v. Hellerstedt case). He signed a ‘religious freedom’ law that would have legalized discrimination against LGBTQ persons and only ‘amended’ it after a national outcry. Because Pence has guided public health policy based on his ‘conservative values,’ rather than on evidence and best practices in public health, he presided over one of the fastest growing outbreaks of HIV infection in rural areas in the United States.

Trump Suggests He Can Relate to Black Americans Because “Even Against Me the System Is Rigged”

Trump suggested to Fox News’ Bill O’Reilly that he could relate to the discrimination Black Americans face since “the system [was] rigged” against him when he began his run for president.

When asked during a Tuesday appearance on The O’Reilly Factor what he would say to those “who believe that the system is biased against them” because they are Black, Trump leaped to highlight what he deemed to be discrimination he had faced. “I have been saying even against me the system is rigged. When I ran … for president, I mean, I could see what was going on with the system, and the system is rigged,” Trump responded.

“What I’m saying [is] they are not necessarily wrong,” Trump went on. “I mean, there are certain people where unfortunately that comes into play,” he said, concluding that he could “relate it, really, very much to myself.”

When O’Reilly asked Trump to specify whether he truly understood the “experience” of Black Americans, Trump said that he couldn’t, necessarily. 

“I would like to say yes, but you really can’t unless you are African American,” said Trump. “I would like to say yes, however.”

Trump has consistently struggled to connect with Black voters during his 2016 presidential run. Despite claiming to have “a great relationship with the blacks,” the presumptive Republican nominee has come under intense scrutiny for using inflammatory rhetoric and initially failing to condemn white supremacists who offered him their support.

According to a recent NBC News/Wall Street Journal/Marist poll released Tuesday, Trump is polling at 0 percent among Black voters in the key swing states of Ohio and Pennsylvania.

What Else We’re Reading

Newt Gingrich, who was one of Trump’s finalists for the vice presidential spot, reacted to the terrorist attack in Nice, France, by calling for all those in the United States with a “Muslim background” to face a test to determine if they “believe in sharia” and should be deported.

Presumptive Democratic nominee Hillary Clinton threw her support behind a public option for health insurance.

Bloomberg Politics’ Greg Stohr reports that election-related cases—including those involving voter-identification requirements and Ohio’s early-voting period—are moving toward the Supreme Court, where they are “risking deadlocks.”

According to a Reuters review of GOP-backed changes to North Carolina’s voting rules, “as many as 29,000 votes might not be counted in this year’s Nov. 8 presidential election if a federal appeals court upholds” a 2013 law that bans voters from casting ballots outside of their assigned precincts.

The Wall Street Journal reported on the election goals and strategies of anti-choice organization Susan B. Anthony List, explaining that the organization plans to work to ensure that policy goals such as a 20-week abortion ban and defunding Planned Parenthood “are the key issues that it will use to rally support for its congressional and White House candidates this fall, following recent setbacks in the courts.”

Multiple “dark money” nonprofits once connected to the Koch brothers’ network were fined by the Federal Election Commission (FEC) this week after hiding funding sources for 2010 political ads. They will now be required to “amend past FEC filings to disclose who provided their funding,” according to the Center for Responsive Politics. 

Politico’s Matthew Nussbaum and Ben Weyl explain how Trump’s budget would end up “making the deficit great again.”

“The 2016 Democratic platform has the strongest language on voting rights in the party’s history,” according to the Nation’s Ari Berman.

Commentary Sexual Health

‘Not the Enemy, But the Answer’: Elevating the Voices of Black Women Living With HIV

Dazon Dixon Diallo

National HIV Testing Day is June 27. But for longtime advocates, ensuring that the women most affected by the epidemic can get and influence care and policy is the work of many years.

I met Juanita Williams in the mid-1980s. She was the first client at SisterLove, the then-new Atlanta nonprofit I founded for women living with AIDS.

June 27 is National HIV Testing Day, and many women will be tested during the observance. But when I met Williams, HIV was a growing reality in our communities, and women were not even recognized as a population at risk for HIV at that time.

This lack of understanding was reflected in women’s experiences when seeking care. Williams’ attempt to get a tubal ligation had been met with fear, ignorance, and hostility from a medical team who informed her she had AIDS. Not only did they refuse to provide her the medical procedure, the hospital staff promptly ushered her down the back staircase and out the door. Williams was left without information or counseling for what was devastating news.

A Black woman who grew up in Syracuse, New York, she had moved to her family’s home state of South Carolina. Her first major decision after her diagnosis was to leave South Carolina and move to Atlanta, where she believed she would get better treatment and support. She was right, and still, it wasn’t easy—not then and not now. Even today, Williams says, “Positive people are not taken seriously, and positive women are taken even less seriously. People think positive people are way down on the totem pole.”

As communities across the United States observe National HIV Testing Day and emphasize taking control of our health and lives, women’s voices are an essential but still neglected part of the conversation. The experiences of Black women living with HIV, within the broader context of their sexual and reproductive health, highlight the need to address systemic health disparities and the promise of a powerful movement at the intersection of sexual and reproductive justice.

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The urgency of adopting an intersectional approach to sexual and reproductive health comes to light when considering the disproportionate impact of HIV on women of color. Black women account for 69 percent of all HIV diagnoses among women in the South. Advocates also acknowledge the history of biomedical and reproductive oppression that Black women have suffered throughout American history, including forced pregnancy and childrearing during slavery to forced sterilization afterward. Keeping these matters in mind helps us understand how the HIV epidemic is a matter of sexual and reproductive justice.

Taking seriously the perspectives of women such as Williams would amplify our collective efforts to eradicate HIV’s impacts while elevating women’s health, dignity, and agency. This is especially pressing for women living with HIV who experience the greatest disparities and access barriers to the broad spectrum of reproductive health, including contraception and abortion.

The policy context has created additional barriers to advancing the reproductive health of women living with HIV. For example, the 2015 National HIV AIDS Strategy Update neglected to mention family planning or reproductive health services as arenas for providing HIV prevention care. Yet, in many instances, a reproductive health clinic is a woman’s primary or only point of access to health care in a given year. Providing HIV prevention and care in family planning clinics is a way to provide a space where women can expect to receive guidance about their risk of exposure to HIV.

As advocates for women living with HIV, we at SisterLove are committed to ensuring that human rights values are at the center of social change efforts to protect and advance the sexual and reproductive health and rights of women and their families. We work to transform the policy frame to one that asserts women’s agency to make decisions that are best for themselves and their loved ones. We draw strength from the resilience and determination of the women we serve.

Several years after becoming deeply involved with SisterLove, Williams became an advocate for her own reproductive health and began speaking out on behalf of other Black women living with HIV. She eventually became a trainer, counselor, and health outreach worker.

Later, in 2004, Williams was the only woman living with HIV invited to be a main speaker at the historic March for Women’s Lives in Washington, D.C. She is a mother, grandmother, and great-grandmother who has returned to South Carolina, where she teaches other women living with HIV about sexual and reproductive justice and human rights. Williams uses her own story and strength to help other women find theirs.

“Give [women living with HIV] a voice and a platform for that voice,” she has said. “Give a safe place to let their voices be heard and validate them …. We need positive women’s voices to continue to fight the stigma. How do we do that? We tell our stories and reflect each other. I am not the enemy, I am the answer.”

Advocates need strength as we work at many critical intersections where the lives of women and girls are shaped. We cannot address HIV and AIDS without access to contraception and abortion care; health and pay equity; recognition of domestic and gender-based violence; and the end of HIV criminalization. And as advocates for sexual and reproductive health in our communities, SisterLove is working alongside our sisters to support National HIV Testing Day and ensure all people have the information, tools, and agency to take control of their health.

Elevating the health and dignity of people living with HIV calls for special attention to the epidemic’s implications for women of color and Black women, particularly those within marginalized communities and in the Deep South. The voices and leadership of the most affected women and people living with HIV are essential to making our efforts more relevant and powerful. Together, we can advance the long-term vision for sexual and reproductive justice while working to eradicate HIV for all people.