Immunocompromised in a COVID-Weary World
April 7, 2022
An immunosuppressed physician explains what navigating her life – and her workplace – is like in this COVID-fatigued world.
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Dan Gorenstein: Pandemic policies are shifting.
Across the country, officials are relaxing COVID restrictions and protocols that have been in place since the Spring of 2020.
To many Americans, this all signals a shift that the U.S. is on a path to pre-pandemic normalcy.
But moving on from COVID concerns is a luxury some people in the U.S. who are immunocompromised don’t have– 7 million people who face higher risks from the virus.
And their fears are climbing as an Omicron subvariant becomes responsible for more and more cases over the last several weeks.
Today, we meet an immunosuppressed physician who explains what navigating her life – and her workplace – is like in this COVID-fatigued world.
I’m Dan Gorenstein. This is Tradeoffs.
DG: In 2019, Lindsay Ryan was practicing medicine, traveling the world, scaling mountains.
Lindsay Ryan: I would pick a random country on my World Mountains list to get the maps for the area and go.
DG: That December, Lindsay was in the Amhara region of northern Ethiopia climbing a 14,000- foot mountain.
Two weeks later, she was back in the States, laying in a hospital bed.
LR: I had gone from someone who was a triathlete to like barely able to walk to the corner store and buy milk and biscuits for my dog.
DG: Lindsay felt a constant, burning nerve pain in her legs and feet.
She was short of breath, and her heart felt like the tennis ball in a championship match during the Australian open….
Doctors diagnosed her with a rare neurological autoimmune disease.
Her physicians put her on medications that keep her condition in check.
But the treatment, suppresses her immune system.
Basically the medicine makes it very difficult for her body to defend itself against infections and viruses, like COVID.
Overnight Lindsay joined a rare club, an estimated 3% of the country’s population who are immunocompromised….
These are people that may have a genetic mutation or diseases, like HIV.
Or take medications, like Lindsay.
LR: There really is a lot of subtlety within immunosuppression. It is a huge spectrum from people who are profoundly at risk of death from COVID to people who are at maybe a little bit of increased risk, or not really at all.
DG: Unfortunately for Lindsay, she is at risk of developing severe complications from COVID.
In the immunocompromised club, she is a VIP.
The pandemic ramped up while she was still learning to live with her condition.
She remembers bunkering down with her dog, Juba. And knowing that even leaving her apartment was risky.
A stray cough or sore throat sent her mind racing.
LR: oh, jeez, this could be, you know, the last night before I end up back in the hospital, super sick with COVID and on a ventilator, this is before any effective treatments… So yeah, so those days were certainly pretty anxiety provoking and really lonely.
News clip: And the pandemic continues to accelerate, in the past six weeks, the total number of cases has roughly doubled. We have learned an enormous amount, and we’re still learning.
DG: By July 2020, eight months into Lindsay’s diagnosis, doctors found a medication regimen that got her back on her feet.
She was ready to return to work as an ER doctor at the San Francisco VA Medical Center.
She knew that was risky.
LR: I got a notary and did my will. I did my health care power of attorney. And I’m in my thirties. And I still made sure all that was squared away because I didn’t want to be caught off guard if something terrible happened.
LR: I think one of the advantages of medicine for me is that it trains you really well not to freak out. You know, I think when I got in the space of actually being at work, and you sink into your job of actually seeing patients that any freak out kind of dissipates and you just do the job in front of you.
DG: Fast forward two years….
News montage: Circumstances have changed. Case counts are declining. Also the science has changed. We know that vaccines protect very well against Omicron, which is the dominant variant…This comes as democratic governors from ten states and some local officials are lifting mask mandates to varying degrees.
DG: In spring 2022, so many people are over business and school closures, social distancing and masking. They’ve got COVID-fatigue.
So the challenge for Lindsay is keeping herself safe while the people around her are more relaxed than ever.
She’s gotten four COVID shots, but like for many other immunocompromised people, the vaccines provide an unknown amount of protection.
LR: If you are on certain immunosuppressants and you’re exposed to the vaccine, your immune system responds kind of sluggishly. So then when you’re exposed to coronavirus, your immune system really isn’t very well prepared by the vaccine. It acts as if it’s never seen coronavirus before.
DG: Many of Lindsey’s colleagues at the hospital have swapped their N95s for surgical masks.
That’s not an option for her.
LR: The way I protect myself is really through meticulous use of protective equipment at work. So for me, my N95 mask is on from the time I enter the building until the time I leave. And if I need to have a drink of water or something or eat, it’s in the ambulance bay outside, sitting on a ledge
DG: At work, Lindsay’s colleagues often step in to care for patients who come to the ER with really high fevers or signs of COVID.
At home, that early pandemic isolation is still a big part of her life.
This is a 38-year-old woman who yearns to get on a plane, climb more mountains, sit in a restaurant and share a meal with friends.
She doesn’t want to think twice when the person standing behind her in the grocery store coughs…
This experience has been exhausting and sad.
LR: This was my third Christmas in a row by myself…the first because I was too sick and couldn’t celebrate. And the second was, kind of early on in the US vaccination campaign. And then this year was Omicron, and so I spent Christmas reading a novel and I hope next Christmas won’t be like that.
DG: Lindsay is determined to find ways to make her isolation more livable.
A good example…Lindsay packed up her Honda and drove to a state park near the Mexican border with her dog at the height of the Omicron surge.
They camped for a few nights…
LR: We saw a bobcat, we saw an owl. We went through all these dry canyon washes. And because I was like, well, if I was going to make solitude feel chosen, where would solitude feel most chosen? And the middle of the desert in the winter felt like a pretty appropriate choice. So I’ve tried to figure out ways that I can make this time feel like I have a little bit more say over it, like it’s not all just happening to me.
DG: She’s tried to reframe how she looks at her life…she thinks of a famous quote her friend told her about…the one about the difference between a monastery and a prison, is all mindset.
But no matter how she frames it, this is a difficult time.
And conditions may be getting more dangerous for Lindsay and millions of others.
A contagious subvariant of Omicron, is now the most dominant strain of the virus in the world.
In the U.S., it is now responsible for more than half of new cases…and public health officials brace for another COVID wave.
When we come back…the uncertainty of COVID funding…and how that makes decision-making much harder for Lindsay and everyone else in the immunocompromised club.
DG: Welcome back.
The US government has spent nearly 4 trillion dollars in its COVID response.
Providing free testing, masks, vaccines and treatments have been key to getting the country to where it is today.
Joe Biden: 75 % of adult Americans fully vaccinated and hospitalizations down by 77 %, most Americans can remove their masks and move forward safely.
DG: That’s president Biden during his State of the Union address in March.
He told Congress the country needs to keep its foot on the gas if it wants to put COVID in the rearview mirror.
JB: Of course, continuing this costs money, so it will not surprise you I’ll be back to see you all.
DG: A few days after the speech, Biden asked lawmakers to approve 22.5 billion more dollars.
Part of that was to secure a treatment really valuable to immunocompromised people, the drug Evusheld which can prevent COVID.
But due, in part, to the size of the federal government’s original purchase – and its distribution – some doctors and hospitals have had to ration it.
News clip: Accessing the drug may not be as easy as you think. Meanwhile UPMC is entering eligible patients into a lottery system.
DG: Money was also earmarked to purchase treatments that can prevent severe symptoms if you get COVID. Those have also been hard to come by.
The White House warned it could be out of both drugs by the end of the year without more money.
Knowing those treatments are easy to get…would make it easier, Lindsay says, to take ‘risks’…like meeting friends at a bar, or spending Christmas with her family.
LR: So that’s actually been something I’ve been watching really closely over the last couple of weeks. It’s one of the times when a political decision In DC has most directly affected my life.
Whether it was the battle over funding in Congress…or relaxing masking mandates…this all sends a clear signal to Lindsay that there’s a willingness to accept some collateral damage.
But when you- and the seven million people in the club – are the potential collateral damage…it’s frightening and, for Lindsay, unacceptable.
LR: There’s this sense that the rest of America is moving on and is kind of blithe to people’s plight, and also that America is willing to drop all these restrictions and declare this quasi victory over the pandemic while not having done what’s necessary to make immunocompromised people’s lives more safe.
DG: Lindsay decided to write publicly as a way to advocate on behalf of the club she believes has been left out of the COVID conversation.
Last year, the Journal of the American Medical Association – JAMA – published her essay about living in the pandemic without the protection of vaccines.
Linday says the essay spawned a mini community…receiving about 100 emails across the country from others struggling with the nation’s shifting pandemic attitude.
LR: They express a lot of pain, a huge feeling of abandonment, with this uncertainty about people’s dreams, aspirations, plans, what their life will look like, can look like. I think for a lot of people, they’ve felt like their voices have just been muted and their lives are quite invisible.
DG: Lindsay says people wrote to tell her that her essay helped them feel more connected.
But as long as this virus is around, immunocompromised people will live riskier lives than they did before.
That’s why Lindsay says Senators pushing through this latest round of funding – which would mandate $5 billion dollars in spending on therapeutics – would help make the lives of everyone in her club a little bit safer.
She’d also like to see employers make workplace accommodations for people vulnerable to the virus…like offer paid sick leave and improve ventilation.
LR: At this juncture in the pandemic, you know, we shouldn’t be asking the question, how do we go back to normal? We should be asking like, what do we want our normal to look like as a society? Do we want it to look like it did pre-pandemic where, you know, immunocompromised people, poor people, people of color all just die at higher rates of various diseases? Or do we want to think about what a better, more equitable society could look like?
DG: No one is sure what the next chapter of the pandemic holds.
But Lindsay says if case rates and hospitalizations are low in San Francisco, Lindsay has made peace taking certain risks.
LR: Will I sometimes see people indoors? Yea I will. You know, like depending on the rates in the community, I occasionally have someone over and I’ll shove a swab up their nose as my ‘hello’ and then will then apologize profusely and we’ll have dinner or whatever. Yeah, I’ll do that sometimes. I don’t have no social life. But I certainly have a more muted social life than I used to.
DG: Lindsay hopes one day the pandemic will be an afterthought.
Until then, she’ll keep her N95 mask handy, a watchful eye on community spread, and lawmakers in DC.
I’m Dan Gorenstein and this is Tradeoffs.
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Additional Reporting on Immunocompromised People and the Pandemic:
It Was Already Hard to Find Evusheld, a Covid Prevention Therapy. Now It’s Even Harder. (Hannah Recht, Kaiser Health News, 3/17/22)
The White House says it’s running out of money to cover COVID tests and vaccines (Tamara Keith and Kelsey Snell, and Amanda Morris and Maggie Astor; NPR, 3/15/22)
Most vulnerable still in jeopardy as COVID precautions ease (Lauran Neergaard, Associated Press, 2/10/22)
The Millions of People Stuck in Pandemic Limbo (Ed Yong, The Atlantic, 2/16/22)
Vulnerable to the Virus, High-Risk Americans Feel Pain as the U.S. Moves On (Amanda Morris, Maggie Astor, The New York Times, 2/24/22)
Vaccinated but Not Protected—Living Immunocompromised During the Pandemic (Lindsay Ryan, JAMA, 6/7/21)
Lindsay Ryan, physician and HIV specialist
The Tradeoffs theme song was composed by Ty Citerman, with additional music this episode by Blue Dot Sessions.
This episode was produced by Andrea Perdomo and mixed by Andrew Parrella.
Additional thanks to:
Emily Landon, Nathan Trueger, and Dipti Barot.