Chronic Illness, COVID and the Vaccine – Impossible Choices

A look at the difficult decisions being made by members of the community with chronic illness.

Staring up from his Milwaukee hospital bed in March, 49-year-old Judge Derek Mosley made a choice. To attempt to fight coronavirus, he chose to go off the immunosuppressant drugs which were keeping his transplanted kidney functioning. He gambled with his kidney to save his life, and he won. Now, facing a different choice, he wonders if he’ll get lucky twice. Coronavirus vaccine rollouts are in full swing in the US, and as states are deciding who gets vaccinate first, whether or not Judge Mosley makes the cut, he says, “I won’t be first in line for it.”

From mistrust of medicine based on a long history of maltreatment and medical malpractice against minorities, to worries about the effects of the vaccine on those with chronic illness, the layers of worry press against Judge Mosley’s conscience as he tries to make the safest, smartest choice.

For the last eight months, Judge Mosley has been making one difficult decision after another. Whether deciding to walk out of a grocery store when a mask mandate isn’t being enforced, to making the tough call that his teenage daughters wouldn’t play sports this year, the constant choices fatigue him. As a prominent member of the Milwaukee community, an African American, and someone who suffers from chronic kidney disease, Judge Mosley juggles multiple worries. The historical context in particular weighs heavy on his mind, saying, “My initial reticence to take the vaccine really comes from distrust between African Americans and the medical community. Especially when it concerns rolling out a new vaccine for a virus that has hit minority communities hard.”

Photo provided by Judge Derek Mosley
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African American Wisconsinites make up about 6.5 percent of the state population, yet they are dying at a rate of about 11 percent. Milwaukeeans know this. It’s no leap in logic to infer that, perhaps, the medical community still neglects to prioritize minority patients. The mistrust is deep-seeded from generations of African Americans who have learned that their medical needs will, at best, be treated with a dose of skepticism or, at worst, manipulated in the name of scientific discovery. “I think of the Tuskegee Syphilis Study,” Judge Mosley writes over email, referring to the forty-year-long travesty conducted by the Centers for Disease Control and the United States Public Health Service where, from 1932 to 1972, over 600 Black men thought they were receiving treatment for syphilis. Instead, the PHS and CDC lied about their diagnoses, neglected to tell them when penicillin became widely available as treatment for syphilis, and allowed the sick men to continue potentially infecting others. So, Judge Mosley hesitates to jump to the front of the line for the vaccine, despite knowing that, as someone with chronic illness, he very well might be escorted to the top of the list.

Photo provided by Judge Derek Mosley

Further west, in Oconomowoc, Jacque English, 41, mulls over the choices she has made all pandemic-long as well. She knows she’s lucky to be able to stay at home with her two daughters. It doesn’t make the isolation for her family any easier. “I miss when we were all doing Covid,” she says over Zoom. She means she misses the two weeks in March, when the United States seemed, well, united.

“It’s like I have to justify why I’m taking this seriously. Fortunately, I have a pretty good excuse,” she says.

English has Polycystic Kidney Disease, which causes her kidneys to become enlarged and covered in benign cysts. Her specific kind of PKD is genetic, and it took her mother’s life about a decade ago. When a new drug became available she jumped through all the necessary hoops to be able to take it, including going for biweekly blood work. Then, coronavirus happened. She weighed the safety of going out in public to a hospital to get her bloodwork done so she could take the medication versus staying safe at home. Ultimately, she chose to stay home, until her insurance notified her that they would not continue to cover the prescription if she didn’t stay up-to-date with it. “I don’t have an extra $20,000 a year lying around to pay for it out-of-pocket, so I decided to get my bloodwork done.” Ultimately, she got in touch with a mobile lab who comes to her, but the stress of each new hurdle to cross as the numbers continue to rise exhausts her.

English hopes that’s headed toward the rear view now that the vaccine rollouts have begun, “I’m Team Vaccine all day,” she wrote over email, “I’m hoping people will listen to the science and get vaccinated so we can achieve the herd immunity needed to protect our kids and other vulnerable populations who can’t get the vaccine at this time.” As soon as she can, she plans to get vaccinated, although it’s unclear exactly when that will be. So English continues to shelter in place, staying home as much as possible, even forgoing visits with her father, who lives in her neighborhood.

Photo by Erin Lee Photography, courtesy of Jacque English

Judge Mosley knows more than he should about not seeing family thanks to coronavirus. While he was fighting for his life in March, he chose to give up the immunosuppressant drugs that keep his body from killing the transplanted kidney in order to allow his immune system to fight the virus. He did this alone in the hospital, with no way to contact his family unless a nurse helped him make a FaceTime call. He reached the precipice of death, with the nurse rolling in an iPad so, as he recounts, “My family could say our goodbyes. I really thought that was it.”

Even over Zoom, there is an unmistakable look of pain tinged with post-traumatic stress on his face as he recalls these horrific moments that continue to haunt both him and his family. Now, back home and, according to his regular lab work, healthy, he continues to feel the psychological effects of his coronavirus battle. He jumps at every microwave beep or alarm, starting to take 100 deep breaths just to prove to himself that he can. Compounding this is the lack of cohesive research or a cogent narrative about the safety of the vaccine, how it will be distributed, and how he needs to go about getting it if he so chooses. He worries, too, that the vaccine will require multiple doses, and he doesn’t know where his immunity stands. Despite promising evidence that those who faced rough bouts with coronavirus will have strong natural immunity, the last antibodies test that he took came out negative. Whether that means he has latent immunity to coronavirus or not, he says, “We can hope for that. But of course, I don’t really know.”

Ultimately, that’s the issue. Too much is still unknown for patients with chronic illness to feel safe, no matter what they do. It’s unknown whether transplant recipients should be more cautious than others who have chronic diseases. Patients also don’t know if they can trust the rollout to safely and efficiently get to the populations of minorities who are disproportionately dying. As the trucks roll out of the Pfizer plants around the country filled with vaccine vials, promises that the most essential and at-risk citizens will get the first doses, and hope for a return to normalcy, Judge Mosley’s concerns wave a caution flag. Milwaukee must ensure that these vaccines are distributed responsibly and with an eye for our most vulnerable. Whether they are those whose ancestors have suffered mistreatment in the past, those with chronic illness like Jacque English, or those, like Judge Derek Mosley, who are both, there’s one shot to do this right.

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