COVID-19

Organ Centers to Transplant Patients: Get a Covid Shot or Move Down on Waitlist

A Colorado kidney transplant candidate who was bumped to inactive status for failing to get a covid-19 vaccine has become the most public example of an argument roiling the nation’s more than 250 organ transplant centers.

Across the country, growing numbers of transplant programs have chosen to either bar patients who refuse to take the widely available covid vaccines from receiving transplants, or give them lower priority on crowded organ waitlists. Other programs, however, say they plan no such restrictions — for now.

At issue is whether transplant patients who refuse the shots are not only putting themselves at greater risk for serious illness and death from a covid infection, but also squandering scarce organs that could benefit others. The argument echoes the demands that smokers quit cigarettes for six months before receiving lung transplants or that addicts refrain from alcohol and drugs before receiving new livers.

“It is a matter of active debate,” said Dr. Deepali Kumar, an expert in transplant infectious diseases at the University of Toronto and president-elect of the American Society of Transplantation. “It’s really an individual program decision. In many programs, it’s in flux.”

Leilani Lutali, 56, a late-stage kidney disease patient from Colorado Springs, Colorado, learned in a Sept. 28 letter from UCHealth in Denver that if she didn’t begin a covid vaccine series within 30 days, she would lose her spot on the transplant waiting list. Both she and her living donor, Jaimee Fougner, 45, of Peyton, Colorado, refused to get vaccinated, citing religious objections and uncertainty about the safety and effectiveness of the vaccines.

Kidney patient Leilani Lutali (left) of Colorado Springs, Colorado, was placed on inactive status on a kidney transplant waiting list at UCHealth in Denver for refusing to get vaccinated against covid-19. Lutali and her would-be living donor, Jaimee Fougner, of Peyton, Colorado, are asking Texas transplant centers to consider performing the operations. (Jaimee Fougner)

“I have too many questions that remain unanswered at this point. I feel like I’m being coerced into not being able to wait and see and that I have to take the shot if I want this lifesaving transplant,” Lutali said.

She said she offered to be tested for covid before the surgery or to sign a waiver absolving the hospital of legal risk for her refusal of the vaccine. “At what point do you no longer become a partner in your own care regardless of your own concerns?” she said.

Lutali now hopes to take her transplant quest to Texas, where several hospitals, including Houston Methodist and Baylor University Medical Center in Dallas, said they don’t require covid vaccinations to approve active candidates for the national waiting list.

The difference between policies in Denver and Dallas — and elsewhere — underscore a tense national divide. As of late April, fewer than 7% of transplant programs nationwide reported inactivating patients who were unvaccinated or partially vaccinated against covid, according to research by Dr. Krista Lentine, a nephrologist at the Saint Louis University School of Medicine.

But that was just a snapshot in late spring, and like all covid-related practices, it’s “rapidly changing,” Lentine said.

UCHealth in Denver began requiring covid vaccinations for transplant patients in late August, citing the American Society of Transplantation’s August recommendation that “all solid organ transplant recipients should be vaccinated against SARS-CoV-2.”

Patients who undergo transplant surgery have their immune systems artificially suppressed during recovery, to keep their bodies from rejecting the new organ. That leaves unvaccinated transplant patients at “extreme risk” of severe illness if they are infected by covid, with mortality rates estimated at 20% to 30%, depending on the study, Dan Weaver, a spokesperson for UCHealth said. For the same reason, transplant patients who receive covid vaccines after surgery may fail to mount a strong immune response, research shows.

UW Medicine in Seattle began mandating covid vaccines this summer, said Dr. Ajit Limaye, director of the solid organ transplant infectious diseases program. Patients were already required to meet other stringent criteria to be considered for transplantation, including receiving inoculations against several illnesses, such as hepatitis B and influenza.

“For anyone who does not have a medical contraindication, basically, we’re requiring it,” he said. “There’s a very strong sense to make it a requirement, like all the other hoops, straight up.”

By contrast, Northwestern Medicine in Chicago, where doctors performed the first double-lung transplant on a covid patient in June 2020, is encouraging — but not requiring — vaccination against the pandemic disease.

“We don’t decline care of transplant based on vaccine status,” said Jenny Nowatzke, Northwestern’s manager of national media relations. “The patient also doesn’t get any lower scores.”

The lack of consistent practice across programs sends a mixed message to the public, said Dr. Kapilkumar Patel, director of the lung transplant program at Tampa General Hospital in Florida, where covid vaccines are not required.

“We mandate hepatitis and influenza vaccines, and nobody has an issue with that,” he said. “And now we have this one vaccination that can save lives and make an impact on the post-transplant recovery phase. And we have this huge uproar from the public.”

Nearly 107,000 candidates are waiting for organs in the U.S.; dozens die each day still waiting. Transplant centers evaluate which patients are allowed to be placed on the national list, taking into account medical criteria and other factors like financial means and social support to ensure that donor organs won’t fail.

“We really make all kinds of selective value judgments,” said Dr. David Weill, former director of Stanford University Medical Center’s lung and heart-lung transplant program who now works as a consultant. “When we’re selecting in the committee room, I hear the most subjective, value-based judgments about people’s lives. This is just another thing.”

The centers can choose to place candidates on inactive status for a variety of reasons, including medical noncompliance, according to data from the United Network for Organ Sharing, which oversees transplants. As of Sept. 30, that category accounted for 738 of more than 47,000 registrants waiting in inactive status, though it’s not clear how many are tied to vaccination status.

A particularly thorny question involves unvaccinated people who need transplants specifically because covid infections destroyed their organs. As of late September, more than 200 lungs, as well as at least six hearts and two heart-lung combinations, had been transplanted for covid-related reasons in the U.S., according to UNOS data.

Many of those organs were transplanted earlier in the pandemic, before any covid vaccine was widely available. That’s no longer the case, Weill said. “If you’re just now getting vaccinated, you’ve done it at gunpoint, actually,” he said. “It’s not just a personal choice; they’re making some kind of a statement.”

Such patients are usually younger and healthier than other transplant candidates, aside from the covid-related damage, and they’re often acutely ill enough to go to the top of any transplant list. “The sick covid patient might go ahead of the stable cystic fibrosis patient,” Weill said.

Tampa General’s Patel said he performed a lung transplant on a patient who was transferred to Florida after being delisted at another center because he wasn’t vaccinated for covid. “I mandated with him basically on a handshake that he will get his vaccine post-transplant,” Patel said. “But his family? They haven’t agreed.”

Eventually, Patel said, he thinks nearly all transplant programs will mandate covid vaccination, largely because transplant centers are evaluated on the longer-term survival of their patients.

“I think it’s going to spread like wildfire across the country,” he said. “If you start losing patients in a year due to covid, it will be mandated sooner rather than later.

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Clarity on Covid Count: Pandemic’s Toll on Seniors Extended Well Beyond Nursing Homes

As covid-19 resurges across the country, driven by the highly infectious delta variant, experts are extending our understanding of the pandemic’s toll on older adults — the age group hit hardest by the pandemic.

New research offers unexpected insights. Older adults living in their own homes and apartments had a significantly heightened risk of dying from covid last year — more than previously understood, it shows. Though deaths in nursing homes received enormous attention, far more older adults who perished from covid lived outside of institutions.

The research addresses essential questions: Which conditions appear to put seniors at the highest risk of dying from covid? How many seniors in the community and in long-term care institutions might have died without the pandemic? And how many “excess deaths” in the older population can be attributed to covid?

Of course, it’s already known that older adults suffered disproportionately. As of Aug. 4, more than 480,000 people age 65 and older perished from covid — 79% of more than 606,000 deaths in the U.S. overall, according to the latest data from the Centers for Disease Control and Prevention. (This is likely an undercount because it relies on death certificate data that may not be up-to-date or accurately reflect the true toll of the virus.)

Still, new information about older adults’ vulnerabilities is useful as covid cases climb again and unvaccinated people remain at risk. Some key results from studies published over the past few months:

Death rates varied among groups of seniors. In a study published in Health Affairs in June, experts from the Department of Health and Human Services analyzed data for more than 28 million people with traditional Medicare coverage from February 2020 (the approximate start of the pandemic) to September 2020. (Excluded were about 24 million people in Medicare Advantage plans because data crucial to the study wasn’t available.) The researchers compared data for this period with previous years, dating to 2015.

The study examines deaths among individuals with covid and reaffirms headlines that have trumpeted the toll among older Americans. Medicare members diagnosed with covid had a death rate of 17.5% — more than six times the death rate of 2.9% for Medicare members who evaded the virus.

A notable finding in the study: Medicare members with dementia were especially vulnerable. If diagnosed with covid, their death rate was 32%, compared with nearly 14% for those with dementia who weren’t infected. Also at substantially increased risk of death from covid were older adults with serious and chronic kidney disease, immune deficiencies, severe neurological conditions and multiple medical conditions.

Most of the seniors who died of covid lived outside of nursing homes. The HHS experts’ study reported 110,990 “excess deaths” due to covid during the eight-month period it examined — most likely an undercount because many older adults who died may not have been tested or treated for the virus. The term “excess deaths” refers to a death count higher than the number expected based on historical data. It is a core measure of the pandemic’s impact.

Of the excess deaths HHS experts documented, 40% occurred in nursing homes but a larger portion, nearly 60%, were seniors living in other settings.

Other studies suggest far more excess deaths. Estimates of excess deaths in the older population vary widely depending on the period studied, the data sources used and the type of analysis conducted. Another study, published in May in the BMJ (formerly known as the British Medical Journal), calculated 458,000 “excess deaths” in 2020 in the United States. About 72% were people 65 and older, according to the British and American authors.

About two-thirds of these deaths can probably be attributed directly to covid, the authors noted. Others might be due to acute medical care that was delayed during the pandemic, poor management of chronic medical conditions, the effects of isolation and other factors.

Assisted living residents were significantly affected. Data about the impact of the pandemic on assisted living residents has been scarce, in part because these facilities are regulated by states, not the federal government. A study out in June in JAMA Network Open found the death rate for assisted living residents in 2020 — as the pandemic unfolded — was 17% higher than in 2019. In the 10 states with the greatest community spread of covid, the death rate for assisted living residents rose by 24%.

“Efforts must be made to support assisted living communities as they work to address infection prevention and control to keep their residents safe,” said Kali Thomas, a study co-author and associate professor of health services, policy and practice at Brown University.

Underlying medical conditions played a major role. A study by researchers from the Cleveland Clinic and the Health Data Analytics Institute in Dedham, Massachusetts, is one of the first to suggest how many older adults who caught covid would have died from underlying medical conditions even if the pandemic had not been underway. It, too, examined 28 million people with traditional Medicare coverage from the approximate start of the pandemic (the end of February) through November 2020. (Of 28 million people in the study, more than 2.4 % had a confirmed covid diagnosis and 10% had a “probable covid” diagnosis.)

Other studies estimate excess deaths by looking at population-wide data. This study looked at individual data, using a highly complex methodology to calculate a preexisting risk of death for each person based on his or her age, sex, medical conditions and other demographic characteristics. Actual deaths in 2020 were then compared with expected deaths based on those preexisting risks. The report has been published as a preprint without peer review.

About 4% of Medicare members with confirmed or probable covid who were living in the community, in their own homes and apartments, would have died anyway from underlying medical issues, the authors estimated. With covid, the actual death rate climbed to 7.5%.

In nursing homes and other long-term care facilities, 20.3% of residents diagnosed with confirmed or probable covid would have died due to underlying medical issues; with covid, that rose to 24.6%, the authors calculated.

“This is a more accurate picture of the true toll of covid,” said Dr. Daniel Sessler, chair of the department of outcomes research at the Cleveland Clinic. “As it turns out, the greatest increase in deaths [from the virus], in terms of both raw numbers and an increased risk of dying, was in the community, not in long-term care residents.”

The bottom line. About 80% of people 65 and older have been fully vaccinated, leaving millions of seniors still at risk of covid. Special attention should be paid to older adults with dementia and other serious neurological conditions, kidney disease and multiple medical conditions. Older adults, especially the eldest groups, who are frail and who live alone or with little support in areas where the virus is spreading rapidly also deserve special outreach and attention.

We’re eager to hear from readers about questions you’d like answered, problems you’ve been having with your care and advice you need in dealing with the health care system. Visit khn.org/columnists to submit your requests or tips.

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Minister for Seniors at Famed Church Confronts Ageism and the Shame It Brings

Later life is a time of reassessment and reflection. What sense do we make of the lives we have lived? How do we come to terms with illness and death? What do we want to give to others as we grow older?

Lynn Casteel Harper, 41, has thought deeply about these and other spiritual questions. She’s the author of an acclaimed book on dementia and serves as the minister of older adults at Riverside Church in New York City, an interdenominational faith community known for its commitment to social justice. Most of the church’s 1,600 members are 65 and older.

Every Thursday from September to June, Harper runs programs for older adults that include Bible study, lunch, concerts, lectures, educational sessions and workshops or other forms of community-building. She also works with organizations throughout New York committed to dismantling ageism.

I spoke with Harper recently about the spiritual dimension of aging. Our conversation, below, has been edited for length and clarity.

Q: What does a minister of older adults do?

A large part of my job is presence and witness — being with people one-on-one in their homes, at the bedside in hospitals or nursing homes, or on the phone, these days on Zoom, and journeying with them through the critical junctures of their life.

Sometimes if people are going through really difficult experiences, especially medically, it’s easy for the story of the illness and the suffering to take over. Part of my role is to affirm the other dimensions. To say you are valuable despite your sickness and through your sickness. And to affirm that the community, the church is with you, and that doesn’t depend on your capacity or your abilities.

Q: Can you give me an example of someone who reached out to you?

I can think of one today — a congregant in her 70s who’s facing a surgery. She had a lot of fear leading up to the surgery and she felt there could be a possibility she wouldn’t make it through.

So, she invited me to her home, and we were able to spend an afternoon talking about experiences in her life, about the things that were important to her and the ways she’d like the church to be there for her in this time. And then we were able to spend some time in prayer.

Q: What kind of spiritual concerns do you find older congregants bringing to you?

One of the things, undeniably, is death and dying. I see a lot of older adults wanting to express their concerns and desires regarding that.

I can think of one woman who wanted to plan out her memorial service. It was really important for her to think about what would be special for the congregation and her family — a gift she wanted to leave behind.

I rarely encounter a fearfulness about what will happen when someone dies. It’s more about: What kind of care will I receive before I go? Who will care for me? I hear that especially from people who are aging solo. And I think the church has an opportunity to say we are a community that will continue to care for you.

Q: What other spiritual concerns regularly arise?

People are looking back on their lives and asking, “How do I make sense of the things that maybe I regret or maybe am proud or am ambivalent about? What do those experiences mean to me now and how do I want to live the rest of my life?”

We invite story sharing. For instance, we did a program where we asked people to share an important object from their home and talk about how you came to have it and why it’s important to you.

For another program, we asked, “What is a place that’s been important to you and why?” That ended up being a discussion about “thin places” — a Celtic concept — where it feels like the veil between this world and the next is very thin and where you feel a connection with the divine.

Q: Your work revolves around building community. Help me understand what that means.

That’s another theme of spirituality and aging. In middle life and earlier in life, we’re incentivized to be self-sufficient, to focus on what you can accomplish and build up in yourself. In later life, I see some of that shedding away and community becoming a really important value.

There are many types of communities. A faith community isn’t based on shared interests, like a knitting club or a sports team. It’s something deeper and wider. It’s a commitment to being with one another beyond an equal exchange — beyond your ability to pay or repay what I give to you in kind. It’s a commitment to going the extra mile with you, no matter what.

Q: How did the pandemic and spiritual concerns change or influence the nature of spiritual discussions?

Every Sunday, our congregation offers a moment of silence for the victims of covid-19. And every Sunday, we list the names of congregants who are sick and who died, not only of covid. It’s built into our practice to acknowledge sickness and death. And that became something even more needed.

As much as there was a lot of worry about isolation and our older adults, in many ways our ties with one another became stronger. I saw a tremendous amount of compassion — people extending themselves in very gracious ways. People asking, “Can I deliver groceries? Does anyone need a daily phone call? What can I do?”

Q: What about pandemic-related loss?

The grief has been heavy and will live with us for a while. I think that the ongoing work of the church now is to understand what to do in the wake of this pandemic. Because there have been multiple layers of loss — the loss of loved ones, the loss of mobility, the loss of other abilities. There have been significant changes for people, emotionally, mentally, financially or physically. Much of our work will be acknowledging that.

Q: What have you learned about aging through this work?

I’ve learned how real and pervasive ageism is. And I’ve been brought into the world of what ageism does, which is to bring shame in its wake. So that people, instead of moving toward community, if they feel like they’re compromised physically or in some other way, the temptation is to withdraw. I’m pained by that.

Q: What else have you learned?

How wildly creative and liberating aging can be. I’m around people who have all kinds of experience: all these years, all these tragedies and triumphs and everything in between. And I see them every day showing up. There’s this freedom of being without apology.

I’m so appreciative of the creativity. The honesty. And the real radical attention they pay to each other and the world around them. I’m always remarking how many of our older adults pay attention to things that I hadn’t noticed.

Q: It sounds like a form of bravery.

Yes, that’s right. Courage. The courage to almost be countercultural. To say, even if the culture tells me I don’t have a place or I don’t really matter, I’m going to live in a way that pushes back against that. And I’m really going to see myself and others around me. So they’re not invisible, even if they’re invisible in a larger cultural sense.

Those of us who aren’t of advanced age yet, we often think we’re doing a favor by being around older people and listening to their stories. I don’t see it that way at all. It’s not charity to be around older adults. I am a better person, a better minister, our church is a better place because of our older members, not despite them.

It reflects poorly that our imagination is so stunted and limited when it comes to aging — that we can’t see all the gifts that are lost, all the creativity and the care and the relationships that are lost when we don’t interact with older adults. That’s a real spiritual deficit in our society.

We’re eager to hear from readers about questions you’d like answered, problems you’ve been having with your care and advice you need in dealing with the health care system. Visit khn.org/columnists to submit your requests or tips.

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