Just one week post-op for a hysterectomy, *Jara wasn’t feeling well. She was overwhelmed with pain brought on by the surgical procedure, and sought emergency care at her local hospital, which was just five minutes from her home in the suburbs of Atlanta. During intake, she informed a triage nurse of her status. Upon learning Jara’s medical history, the attending staff redirected the young, ailing, Black woman to Metro Atlanta’s Grady Memorial Hospital, because the facility was “good” with “infectious diseases.” It was also more than 25 miles away. Without challenge or question, Jara complied. When she arrived, she sat in an overcrowded and seemingly unclean waiting area for nearly four hours before returning home — unseen and untreated.
Over three decades have passed since the HIV/AIDS epidemic struck globally, setting off a windfall of fear, baffling medical professionals and claiming more than 35 million lives, according to the World Health Organization (WHO). In that time, innumerable amounts of research, advances in medicine, education and awareness has contributed to longer life expectancy for people living with HIV/AIDS, like HIV/AIDS activist Hydeia Broadbent and former NBA player Earvin “Magic” Johnson. Yet discrimination prevails — and is as prevalent within health care as it is in other areas.
In Jara’s case, prejudice was directed toward a member of the demographic most disproportionately disposed. Making up roughly 60 percent of the overall number of women affected with HIV, African American women are diagnosed and living with HIV at a rate higher than women of any other race group. In 2015, white and Latina women made up about 17 percent and 19 percent, respectively, of the total number of women either living or diagnosed with HIV. Meanwhile, African American women totaled 59 percent of this overall population. The intersection of race, gender, economics and education lends itself to the imbalance, and opens the door even wider to HIV/AIDS prejudice within healthcare settings. A 2005 study by the Journal of General Internal Medicine found that 26 percent of adults who were living with HIV/AIDS claimed to have been subjected to “perceived discrimination" from healthcare providers. For some, it is their first encounter with medical discrimination — one they would much rather sidestep.
Dekalb Medical at Hillandale in Stonecrest, Georgia, where Jara initially sought medical attention, has stated on its website that it is “committed to providing efficient, high-quality emergency care and service,” and that “patients are comfortable, seen quickly, and treated with professionalism and compassion.”
However, when asked why Jara was not extended such a courtesy due to her circumstances, a hospital administrator by the name of Gladys stated, “The hospital doesn’t handle everything, so it is not uncommon to refer a patient out to another facility.”
Yet, when it was clarified that Jara was simply seeking treatment for post-op pain, Gladys confirmed that was not proper protocol.
“I’m not sure what happened. She should not have been sent away for something like that,” she said, before recommending a call to the ER manager.
Beliefs and Attitudes
According to a 2016 report, “Stigma toward people living with HIV (PLWH) in healthcare settings is a barrier to optimal treatment,” which is what occurred in Jara’s case, when the initial facility deprived her of emergency care that was unrelated to her illness.
The research also suggests that those living with HIV/AIDS neglect their physical and psychological well-being to avoid discriminatory outcomes. Jara inadvertently did so when she left both hospitals without being served. When questioned specifically about other incidents of prejudice, Jara brushed off the topic as if it were insignificant.
“Ahh, it’s nothing,” Jara said.
Crystal Collins, nurse practitioner and HIV program coordinator for Milwaukee Health Services, Inc. affirms the incidents are real.
“I have heard stories from my patients that some healthcare providers see HIV as a diagnosis on the chart, or when they disclose their status, they seem to treat them differently,” Collins said. “I [was told] that a provider avoided touching the patient and even proceeded to wash his hands several times before leaving out of the exam room."
The study HIV-Related Stigma Among Healthcare Providers in the Deep South turns an eye to the southern, most conservative states, which account for 50 percent of all new HIV infection in the U.S. It reveals methods and reasons for HIV/AIDS bias within healthcare environments, measuring on several levels: Individual, clinical and policy. Factors at the individual and clinical levels included race, gender and religion.
Healthcare workers who were white, or male, or Protestant harbored HIV-related stigma that interfered with patient care, be it directly or indirectly. The findings showed physicians, clinicians, administrators, social workers and community workers projected bias, by being careless with patient confidentiality. A number of healthcare providers were also overzealous in protecting themselves from infection. For example, they wore “masks, protective suits, or double gloving.” Others refrained from direct contact and giving hands-on care — such as physical exams — or refused service altogether.
The Importance of Education and Awareness
HIV-Related Stigma Among Healthcare Providers in the Deep South also found that stigmatization at the policy level had little to do with attitudes and beliefs predicated on race, gender or religion, but more so to do with a lack of training and continuing education for healthcare staff.
“I think this is common for providers, who don’t deal directly with HIV on a daily basis. For providers who have been in the field, they are very emphatic and culturally competent, when dealing with people living with HIV. Education is the best way to deal with discrimination. It takes people to come together to promote change,” Collins said, in regards to the propensity for healthcare workers to stigmatize HIV/AIDS patients and possible, concrete solutions to change this going forward.
“The biggest part of my job is dispelling myths about HIV to help my patients come to terms with their diagnosis.This can only be done by people courageously stepping up and telling their individual stories,” Collins continued. “My patients come from very different walks of life, but what unites them is the willingness to live despite having the virus. HIV can happen to anyone, and until we provide the correct messaging to the greater community about risk and how to prevent HIV, things will continue to stay the same.”
Cultural competency, training and education is essential to end prejudices and discriminatory practices toward people living with HIV/AIDS in healthcare settings. In 2015, the White House Office of National Aids Policy began an initiative to do just this, with the National HIV/AIDS Strategy for the United States. Its goal is to decrease HIV infections, improve healthcare, amplify awareness and eradicate stigmas attached to the disease.
However, that discrimination persists, making it evident that much more is required, particularly as it relates to protecting the human rights of people living with HIV/AIDS, many of whom are probably not aware of their basic concessions under the law. Awareness not only pertains to prevention and treatment, but also the legal rights of those living with HIV/AIDS. Because the nuances of prejudice can often go over some people’s heads and some are not always willing to speak up, arming affected patients with ways to advocate for themselves is priceless. A family member who accompanied Jara to the hospital avouched this.
“I explained hospitals couldn't turn her away. She kind of knew this, but also refused to go to a closer, less crowded hospital. She receives free health care and meditation, yet isn't that educated [in her needs and rights]. I think she is just accepting what she thinks she deserves, as opposed to demanding the care that is rightfully hers,” Jara’s relative said.
*The name was changed to protect the source's anonymity.
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