by: Andreas Chenvainu Nehanda addressed Bergen students via Webex to share their story of struggles with racial discrimination in the American Healthcare system and how it affected their battle with leukemia. Nahanda, who is Black, non-binary, and disabled, shared how their identity and the resulting prejudice against them combined with a precarious economic position led to low odds for recovery. Despite these challenges, they survived. A former community organizer, a musician, and a writer, they are now dedicated to spreading awareness of the systemic barriers around adequate healthcare that disproportionately affect people of color.
The type of leukemia Nehanda was diagnosed with has a relatively high survival rate, “ninety-two to ninety-five percent” they said, but according to Nehanda, by the time they got a diagnosis it had become life threatening. “The problem was I wound up in an ER to be diagnosed, I had gone undiagnosed for so long that I was on my deathbed,” they said. It became clear something was wrong during the period when they were houseless, as their symptoms had been getting worse, including a deepening fatigue, weight loss, bruising, and splitting headaches. Part of the reason they were hesitant to visit the hospital and end up with an unpayable medical bill, and that they were wary of potential mistreatment as a Black person in the American medical establishment.
When their symptoms finally got too severe to minimize, they decided to visit a public health clinic. They took an Uber to a clinic to avoid ambulance fees but were denied service due to a lack of insurance. Eventually they managed to find a clinic willing to check them, and eventually went to Hollywood Presbyterian Hospital. To get a blood test for their symptoms, they had to have a nurse advocate on their behalf. However, Nahanda stressed the importance of the advice their mother gave them, that as a person of color, they would have to deal with the disbelief of the doctors they would have to entrust with their health. According to Nehanda, racism in the medical community is a serious issue. They found doctors who were dismissive of their concerns, or even apathetic to their state of health, and claims often the assumption made about Black Americans who enter the medical system with severe symptoms such as theirs is that they are drug addicts. It took calling in a white friend, according to Naheda, to convince the doctors their issues were serious. This bias is an issue Nehanda takes seriously, something they hope to bring more awareness of.
However, despite the odds, they managed to recover. Naheda spoke how the historical context Black Americans have found has created the social and economic conditions that puts them in a position where they are more vulnerable to medical issues due to the social stigma and material conditions. Thankfully, they had a support network during their uphill battle with cancer.
“There were a lot of really kind ways the community came in that saved my life.” After getting a bone marrow transplant, they chose to spread awareness about these issues to help better the chances of those entering into medical care. “It’s really hard to humanize yourself in a process where you’re constantly being dehumanized,” Nehanda said. Their hope is that by speaking about these issues candidly and affirming the value of the lives of people of color, they can correct these injustices.