Immunocompromised patients worry vaccine exemptions put them in peril

Charlie O'Neill received part of her husband's liver in a 2013 living donor transplant and has been taking drugs that suppress her immune system ever since to prevent her body from attacking the organ.

"I frequently get infections," she said. "Just being an immune-compromised person, you are faced with just every little cold and flu."

O'Neill lives in the small town of Pony in southwestern Montana's Madison Valley. Despite living in an uncrowded rural setting, O'Neill said, the first year of the coronavirus pandemic was terrifying. She rarely left home, waiting for covid-19 vaccines to become available.

Even now, after being vaccinated, O'Neill said the virus is always on her mind when she drives into nearby Bozeman for groceries and other basic needs. She wears a mask and avoids people as much as she can. While vaccinations provide robust protection against hospitalization and death for the typical individual, they are far less effective in those who are immunocompromised.

O'Neill developed abscesses on her liver, requiring daily visits to the Bozeman hospital for antibiotic infusions. In a state where the governor has encouraged health workers to seek vaccination exemptions, she worried about which of the many people involved in her care were instead putting her at risk: the people checking her in at the front desk, the traveling nurses, the imaging technicians?

Gov. Greg Gianforte's office estimates that "thousands of health care workers" have obtained religious exemptions and "remain in the workforce," according to a recent press release.

"I so boldly ask people often just if they're vaccinated, especially if I have to take my mask off for MRIs or something like that," O'Neill said. She said she'd request someone else if a worker told her he or she were unvaccinated or declined to answer, but that hasn't happened.

Most medical staffers across the U.S. are now required to be fully vaccinated against covid under a federal Centers for Medicare & Medicaid Services rule. While, legally, requests for religious or medical exemptions must be allowed at every institution, in much of the country they are reviewed carefully and approved judiciously. In New York City's 12-hospital public system, for example, 100% of staff members inside the hospitals are vaccinated; the few who were granted exemptions are assigned outside tasks.

But in Montana, the pendulum has swung in a different direction.

Gianforte, a Republican who opposed the federal mandate, encouraged health workers to seek religious exemptions before the Feb. 14 deadline to receive one dose of vaccine. His administration provided guidance to hospitals that said the validity of health care workers' religious beliefs shouldn't be questioned in seeking exemptions. Gianforte also told the state health department to create an application for religious exemptions, which is posted at the top of its website to download.

When asked for an interview with Gianforte, spokesperson Brooke Stroyke referred to the governor's open letter to health workers dated Feb. 10.

"The State of Montana will continue to press its claims that the mandate is unconstitutional or otherwise unlawful in the district and appellate courts," the letter read. "In the meantime, however, I urge those of you who are unvaccinated to consider using the religious and medical exemptions that your employers are required to offer, as well as talk to your colleagues or personal health provider about getting vaccinated."

The Equal Employment Opportunity Commission said that employers should assume a request for a religious exemption is based on sincerely held beliefs, but that if there is an objective basis for questioning the request, the employer is justified in making a limited factual inquiry.

There's no way of knowing just how many health care workers remain unvaccinated at any facility. Many hospitals across the state are unwilling to share the data.

Out of nearly 65 hospital facilities statewide, 11 shared their exemption rates with Montana Public Radio, Yellowstone Public Radio, and KHN. Those rates range from under 1% at two critical access hospitals operated by the U.S. Indian Health Service to 37% at Prairie Community Hospital in Terry. Four facilities reported that a quarter or more of their workers had exemptions.

Prairie Community Hospital CEO Burt Keltner said he didn't question exemption requests because losing nearly 40% of his staff would close the hospital.

"Some of the people that had made the choice that they did not want to get the vaccine were some of our best employees," he said.

Montana Hospital Association CEO Rich Rasmussen said one reason most hospitals are leery of sharing how many workers remain unvaccinated is a law passed last year prohibiting discrimination based on vaccination status. Hospitals fear that even providing percentages of unvaccinated workers could spell legal trouble for them, he said.

Centers for Disease Control and Prevention spokesperson Martha Sharan said the agency will soon publish national vaccination rates for medical staffers in CMS-certified acute care hospitals. She added that the dashboard could eventually include national data from other medical facilities participating in certain CMS programs.

CMS will post facility-level vaccination rates from those facilities on its Care Compare website in October, CMS spokesperson Beth Lynk said.

An analysis of voluntarily reported data by the CDC found that nationwide 70% of staff members at medical facilities were vaccinated as of mid-September but noted lower vaccination rates were likely in rural areas. That was before the Biden administration announced the CMS vaccine mandate, and rates have likely increased since.

Paul Conway, chair of policy and global affairs at the American Association of Kidney Patients, said the lack of transparency around covid vaccination rates for medical workers puts immunocompromised patients in a bind.

"During covid, if you're in a dialysis center where you're in there for hours, you're having blood exchanged, you're around a lot of different workers, you're around a lot of different patients, your susceptibility is very high," he explained.

A University of Michigan study found that a quarter of patients on dialysis died if they contracted covid. That study used data from 2020, when vaccines weren't available until December.

Conway said the kidney patients' association wants CMS to make vaccination rates for hospitals and dialysis centers public to help patients make informed decisions. But for the time being, he said, they are on their own. That leaves them in the uncomfortable position of interrogating caregivers about their vaccination status at a time when that is a charged issue in much of the country.

"Patients always do have the right and the freedom to ask the question and, similarly, doctors and nurses also have the freedom to answer the question or not," said Joel Wu of the University of Minnesota's Center for Bioethics. "I think answering the question truthfully is important because I think it builds trust."

Roger Gravgaard, a 62-year-old kidney transplant recipient from Billings who serves as a patient advocate for kidney disease organizations, said unvaccinated staffers need to understand there are real consequences for patients like him. He is grateful all his providers have been forthcoming about being vaccinated without his even having to ask, he said.

"I feel better knowing that they're vaccinated and I would hope that they have the same feeling knowing that I've been vaccinated, because it's a two-way street," he said.

Kaiser Health NewsThis article was reprinted from khn.org with permission from the Henry J. Kaiser Family Foundation. Kaiser Health News, an editorially independent news service, is a program of the Kaiser Family Foundation, a nonpartisan health care policy research organization unaffiliated with Kaiser Permanente.

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