Ellen Keyser Endelman’s whole life is a quarantine. The 24-year-old seminary student lives in Iowa City and, because of a condition called Still’s disease, her immune system is compromised. Still’s is a rare form of debilitating arthritis accompanied by fevers, which damage her body, rashes, inflammation in her brain and joint deterioration. Endelman’s condition is resistant to most treatment. The only thing keeping her alive right now is hope of a bone-marrow transplant and a drug called Actemra, which works like a chemotherapy drug. Endelman is living in an in between place, waiting for her insurance company Cigna to authorize payment for the bone marrow transplant. The transplant is part of a clinical trial, so Cigna’s refusing to pay. As Engleman fights the insurance company for her life she’s, taking Actemra.
As a result, Endelman lives with her husband, taking classes online through the University of Dubuque, increasingly afraid to leave her home because for her, contracting COVID-19, would be a death sentence.
COVID-19, also known as the coronavirus was discovered in China in December of 2019 and has swiftly spread around the world. Lagging response time from US government officials mean that in many places including Iowa, the response to the virus has moved from containment to mitigation. The virus could be more deadly than the flu, but we simply don’t know. What is known is that like the flu, COVID-19 is more dangerous to the elderly and people like Endelman with underlying conditions.
Beyond contracting the virus, Endelman has another worry — Actemra, the chemo drug that keeps her alive, was recently approved to treat COVID-19 patients in China. Endelman is afraid she won’t be able to access or afford Actemra if more countries begin to use it.
And then there is her husband, who is a medical student at the University of Iowa. He’s currently working as an extern, if he had to be quarantined because of exposure to the virus, he would lose two weeks of pay and Endelman would have to move out of their home to limit her exposure. Endelman’s husband is their main income earner. The cost of exposure would be devastating.
For Endelman, COVID-19 isn’t an existential threat, it’s a reality. “My health is already precarious,” said Endelman, “the virus is the difference between life and death.”
Iowa officials have confirmed that there are eight positive cases of COVID-19 so far. Seven of those cases are in Johnson County where Endelman lives. Nationally, experts say that cases of the virus could be higher, but delays in testing and the lack of test kits mean that people who show symptoms and have been exposed aren’t always being tested.
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In Cedar Rapids, Justin Zehr, the owner of the restaurants Bricks and LP Street Food and the new retail store the Sock Spot in the NewBo Market, hasn’t given the pandemic much thought. It’s been a busy couple of months for him and business is good.
But Zehr doesn’t have a career where he can work from home and neither do his employees. If one of his employees are sick they have to find someone to cover their shifts and just have to take the loss in pay. There isn’t paid sick time or insurance. Zehr also employs parents, who he says are some of his most reliable employees, but if schools close because of the virus?
In this industry,” said Zehr, “You just work shoot from the hip.”
Zehr says he’s never face anything like a possible quarantine and in an industry where he’s always reacting and always working, he hasn’t had much time to think about it. The only analogous situation he can think of was last year, when schools were closed due to extreme cold temperatures. His businesses made it work then and he’s confident, they’ll make it work now. But he’s also worried. But any sort of quarantine would be a disaster for him and his employees.
On Tuesday, the National Restaurant Association is hosting a webinar titled “Preparing for the Coronavirus: Steps for Foodservice and Restaurant Readiness.” Zehr is too busy to attend that day, but hopes there is a video he can watch later.
Skylar Alexander Moore is a paraeducator at Horace Mann Elementary School. She works in special education classrooms and the kids she works with rely on routine and structure. Even snow days can disrupt a child’s schedule leaving them frustrated and in some cases, violent. Alexander worries about her students who rely on school for regular meals and worries about herself, because she’s an hourly employee, if she gets quarantined or school closes, she doesn’t get paid. “This virus is going to affect our state’s most vulnerable,” said Moore.
Renee Nelson, spokesperson for the Grant Wood Area Education Agency, told me in an email that the plans for students and educators are still being put together. “At this point we’re monitoring official guidance, thinking ahead to what it might look like weeks and months down the road, and our leadership team is beginning to consider our options for several potential scenarios.”
But as far as plans for students who need extra assistance or rely on school for regular meals? Well, there isn’t one. Chapman says they haven’t received any specific guidance for specific subpopulations of students.
At a news conference on Sunday, Gov. Reynolds assured Iowans that a response team was being assembled to address concerns and prepare a response to any possible crisis.
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Yet, what the COVID-19 crisis reveals is the precarious nature of our lives under an administration that has undermined every social safety net we have. Too many Iowans live one cough away from ruin — 47% of Iowans do not have the savings to cover a $400 emergency, 148,000 Iowans live without insurance and 22.9% of Iowans don’t earn enough to survive without assistance. Going two weeks without pay simply isn’t an option for people living pay check to pay check.
In a state where food assistance has been eviscerated and our privatized Medicaid system is failing, we balance on a dangerous edge and too many of us are one illness away from falling off.