‘I Don’t Want to Risk My Life for a Paycheck’: Immunosuppressed People Grapple With Returning to Work

Elizabeth Groenweghe got a kidney transplant 14 years ago. She now takes several medications to prevent her body from rejecting her transplant organ. But these medications also weaken her immune system, putting her at higher risk of becoming seriously ill if she catches covid-19.

When the pandemic began last year, Groenweghe, 29, worked from home for the first month and a half. But then in May 2020, as the chief epidemiologist for the public health department in Wyandotte County, Kansas, she returned to the office.

“Obviously, I was nervous about it because I’m so immunosuppressed,” said Groenweghe.

She felt relatively safe because her co-workers wore masks and strictly followed infection control protocols. But now that vaccinations have become widely available, her workplace has stopped requiring or enforcing mask use. There is no vaccine mandate for her office, and she knows some co-workers are unvaccinated. She feels uncomfortable working around them.

“I am debating putting a sign on my door that says ‘Please do not enter if you are unvaccinated,’ because I am really concerned about getting covid … and have even had a couple co-workers test positive recently,” said Groenweghe.

“Knowing that I don’t have any protection against covid, I’m still wearing a mask and I’m trying to avoid in-person meetings,” she added. “It has been frustrating because, at home, my bubble of protection is great; all of my family and friends are vaccinated. At work I don’t have as much control.”

While the emergence of the delta variant in the U.S. has made many companies delay the return to in-person work or mandate vaccinations, in other offices, immunosuppressed people like Groenweghe are left to cobble together their own strategies to minimize their risks. The delta variant raises the stakes for many who were already concerned about catching covid when they return. Those who have the option to keep working remotely have done so — but worry about what it means for their careers as their colleagues return to the workplace.

Research showing how well vaccines protect those with weakened immune systems is limited. In part that’s because immunosuppressed people, who make up at least 3% of the U.S. population and include people with cancer, HIV and many chronic health conditions, were not included in the original clinical trials for the three covid vaccines authorized for emergency use.

Scientists didn’t include them because they needed to conduct the clinical trials quickly and were concerned that this group’s immunosuppressive medicines and increased likelihood of developing infections in general would complicate interpreting the study results.

Research does show that those who are immunosuppressed are at higher risk of becoming severely ill from covid, passing the virus to others in their household and getting infected even if vaccinated. A recent study reported that 44% of hospitalized “breakthrough” cases in the U.S. were in immunosuppressed people.

Concerns about her elevated covid risk led Groenweghe to obtain a third dose of the Moderna vaccine on her own — and participate in a Johns Hopkins University research study that involved measuring transplant recipients’ immune response to an extra vaccine dose. Hopkins recently told her she hadn’t produced any antibodies.

But, while the third dose might not have helped Groenweghe, early research shows that a booster shot seems to strengthen the immune response for some with weakened immune systems. Israel began distributing additional doses to the immunosuppressed in July. Britain and France have said they plan to start distributing booster doses to high-risk groups in September. However, the World Health Organization recently called for a moratorium on booster shots until more vaccine could be distributed globally to countries with low vaccination rates.

Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases, said in a July Senate hearing that immunosuppressed people “may actually need a boost as part of their initial regimen in the sense of getting them up to the point where they are protected.”

On Thursday, the Food and Drug Administration amended the emergency use authorization requests for the Pfizer-BioNTech and Moderna vaccines to allow third doses of those shots to be given to certain immunocompromised individuals — specifically, solid organ transplant recipients or those who are diagnosed with conditions considered to have an equivalent level of immunocompromise. The vaccine advisory committee of the Centers for Disease Control and Prevention was scheduled to meet Friday “to discuss further clinical recommendations regarding immunocompromised individuals,” according to the FDA statement.

Well in advance of this green light, patients were asking their doctors about additional shots.

Andrew Clifford is one such patient. (KHN is identifying him by his first and middle names because he fears retaliation from his workplace.) Andrew, a marketing manager from Missouri, is working from home indefinitely and worries about what he might be missing. The 40-year-old has multiple sclerosis and takes immunosuppressive medication.

“The fear of missing out is a tremendous anxiety,” he said. Recently his entire team went back to the office for two weeks to meet with an outside agency. While Andrew was able to go in for two days, he could tell he had missed out on things on the days he stayed home.

“I missed out on the lunchtime convos. When I did show up in the Zoom meetings, I was playing a lot of catch-up,” he said. “I was trying to figure out who I was actually talking to and what they did.”

Some patients, such as transplant recipient Elyse Thomas, aren’t waiting for new guidance from the U.S. government. (KHN is identifying her by her middle and last names because she is worried about pushback from her employer.) Instead, Elyse, a 30-year-old social worker for a high school district in the Bay Area of California, pursued third and fourth doses of a covid vaccine on her own since her school district had staff members return in person in early August.

“Some of us transplant patients have had to take matters into our own hands,” Thomas said. “We can’t wait for the recommendation while we could be dying.”

She asked for an accommodation to continue working remotely during the 2021-22 school year, as she did the year before, but was told all employees must return. Thomas was offered the option to take medical leave without pay if she didn’t want to come into the office, but that would strain her finances. Her workplace does have a mask mandate, but she’s not sure physical distancing will be enforced and she’s even more anxious now that the delta variant is circulating.

“I don’t feel safe and I don’t understand why I have to be there in person,” Thomas said. “I don’t want to risk my transplant for a paycheck. I don’t want to risk my life for a paycheck.”

This story was produced by KHN (Kaiser Health News), a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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