For Immunocompromised People, the Pandemic Is Far From Over

Dr. Lindsay Ryan is passionate about getting people vaccinated. She trains college students to go out into communities and just talk to people about it, listen to their concerns, always with the goal of getting more shots in arms. But this work is hard for her, too, because although the vaccines are highly effective in the vast majority of people, they don’t work on her—she has an autoimmune condition. On Thursday’s episode of What Next, I spoke to Ryan, an emergency department doctor at San Francisco General Hospital and San Francisco VA Medical Center, about what the lifting of pandemic restrictions means to her and the millions like her who are still at risk. This conversation has been condensed and edited for clarity.

Mary Harris: You’ve said your B cells love extracurricular activities. What do you mean by that?

Lindsay Ryan: B cells are meant to recognize foreign pathogens, foreign invaders in the body, different germs, whether those be bacteria or viruses. In an autoimmune disease, the B cell mistakes your own body as a foreign invader.

So you’re attacking yourself.

You attack yourself. One of the potential solutions to that are medications that wipe out the B cell pool. And that means you can’t attack yourself, which is great. You can feel a lot better. It also means that your ability to attack things like the coronavirus is severely compromised because you can’t produce these antibodies that the vaccine is meant to elicit.

So you’re on this drug called Rituxan, and the drug holds back your B cells, and that means both that you are more vulnerable to COVID and the vaccines work less well on you.

It’s definitely a double whammy. I’m both more susceptible to severe disease, death, almost all of these bad outcomes across the board. And we’re not talking more susceptible by 10 percent or 20 percent. We’re talking more susceptible by multiple-fold. And the vaccine works much less well in me.

That’s scary.

It’s scary. Yeah, it’s scary.

There’s a paper that I love, it’s from the early 1980s actually, and it looked at rheumatoid arthritis patients in England. It’s a sociology paper. And it’s about the idea of illness, particularly chronic illness, as an experience of biographical disruption. Normally we write narratives of our lives and we project that story forward to some degree. And with illness, you learn over time to rewrite that story with new limitations upon yourself as the protagonist. And over time you adjust to that. But I think of the lack of vaccine efficacy in immunocompromised people as another big biographical disruption. You have to rewrite your story again with even more limitations, and that is really devastating.

When the pandemic hit, obviously it was devastating. You’re a doctor, you were probably seeing awful things, but in some ways it felt like there was a sense of camaraderie because everyone was immunocompromised, everyone was at risk. Everyone had to take precautions in the way that you were thinking about already.

I think one of the hardest things when you’re sick or at risk of getting sick is the uncertainty. I think that’s almost as difficult as disease—not to be able to project forward what’s going to happen to you. And I think that was a new experience for many people during the pandemic. The fact that anyone could be sick or get sick in a really, really dangerous way in a matter of days. And there was a sense of solidarity because everyone was scared. Everyone was grappling with an uncertainty and a potential mortality hanging over them in a way that hadn’t been true for a lot of people, in a way that a lot of people had never experienced.

So when you heard about the vaccine, I wonder if you were optimistic. For so many people, it was this relief that there was some kind of option to prevent COVID, and I wonder if you felt the same way.

I did feel optimistic, but my optimism was tempered from the beginning. I knew that I might have an attenuated or nonexistent vaccine response.

As a doctor, you were at the front of the line to get a COVID vaccine. To be ready for that, you delayed your normal immunosuppression treatments for over four months, to give the vaccine a chance to spark a response in your body. You got vaccinated in December. Then, to figure out if any of it had worked, you enrolled in a study, giving blood sample after blood sample, waiting for the results. Was it hard to open that email with the results?

Yes. I expected an attenuated result. I didn’t expect to have no neutralizing antibodies.

How soon after getting that result were you going back to the ER to see patients?

Within a few days.

Was that more difficult?

It was a little bit more difficult. I had expected some vaccine response, so I started to be a little bit more relaxed at work, a little bit more relaxed in my daily life. And it was particularly hard because by then the vast majority of my co-workers were vaccinated and really didn’t have much concern going into the rooms of patients with COVID and could let down their guard at work. The break room table was barely inhabited for most of the year, and usually the break room table is filled with cake and coffee and Filipino sweets. And people started going to the break room, socializing. There’s a lot of camaraderie in the ER and to have to, at 1 a.m., go get my Kentucky Fried Chicken from the break room and to have to duck out to some random exam room and eat it alone while everyone’s hanging out in the break room, sure, that’s difficult. …

It’s a really hard emotional state. There is a bit of a schism because on the one hand, you are really happy for people. And on the other hand, it’s so tough. There’s a sense of loss over these small pleasures, and bigger ones too. People’s lives are beginning to accelerate, to go back to normal now. And there’s a group of people who have been left behind, whose vaccines just don’t work. And we still live in a state of uncertainty, just feeling so hemmed in.

You’ve said you’ve even turned down jobs because you don’t feel like in the current state of COVID you can go work at, say, a tuberculosis clinic. That’s a major decision.

It’s certainly tough to see many of my friends on career trajectories I wish I could have. A lot of my work has been out of the U.S. You know, I was planning to go for Doctors Without Borders. I worked clinically in South Africa for a couple years, so I structured my life around certain plans that for now are on hold indefinitely.

As an ER doctor, you must see everyone, all kinds of people, all kinds of feelings about the vaccine. I wonder if you ever find yourself face to face with a patient who may just be refusing to get vaccinated, have a lot of questions about it, and how you deal with that. When you’re looking at a patient where you feel like, Why wouldn’t you go get the vaccine that will protect you and maybe allow me to be more open too, how do you deal with that?

I find it tough. I won’t lie. I think ideally you approach it with a certain amount of quiet curiosity and humility about someone’s motivations and thought processes. That’s not always easy to do.

There’s a lot of barriers to people getting vaccinated. People are scared about their immigration status, for instance, although I imagine everywhere getting the vaccine doesn’t put people at risk in terms of immigration status. People are scared it’s too new. So I try to address those concerns and I probably try to do it more than most people in a busy ER because I’m so invested in it. But do I find it tough? Yes.

One of the extraordinarily gratifying, lovely things about being a doctor during the pandemic has been a huge amount of support for front-line workers. To me, the way that that support can really be shown to me, the greatest form of respect, is to get vaccinated so that I’m not at risk of a virus that would be lethal. Also so the kid down the block that you don’t know has sickle cell doesn’t die, so that the mother down the block who you have no idea has a kidney transplant doesn’t die.

This week, California fully reopened. The governor said 70 percent of Californians have had at least one dose of the COVID vaccine. I wonder what that felt like for you, whether there was a sense of relief or stress.

There is a sense of stress. It’s very hard because I think what I’m often facing as a doctor is a schism in my brain between what makes sense on an academic or clinical level and how I feel personally and viscerally. And I think a certain degree of reopening does make sense at this point. On the other hand, it makes my life tougher. Obviously, if other people aren’t masked, I’m at higher risk. So am I going to wear an N95 more often indoors than I had to previously? Probably.

If you had to describe what that feeling is, that visceral feeling, how would you describe it?

I think despair might be a little bit too strong a word, but I do think there is at least some version of that. Because when the vaccines came out, people could see a light at the end of the tunnel. And I feel like for a lot of immunocompromised people, we are still stuck in that tunnel looking for that light. And we don’t know how long we’re going to be trudging through that tunnel. And that is tough.

The CDC got so much criticism last month when they put out these new guidelines saying vaccinated people could do nearly everything without a mask. And the pushback was because of people like you. Basically, doctors were saying, listen, not enough people are vaccinated yet, people are going to mishear this, they’re going to think they can go maskless no matter what their vaccination status is. I wonder, were you upset about the guidance at the time? As someone who’s training people to go and talk to vaccine-hesitant people, I’m sure you understand that offering them a maskless future is very enticing and may in fact get some folks to get a vaccine who might not otherwise. But at the same time, it’s like the cost of doing that is everything you’re talking about—that despair you’re feeling.

I, like many people, was upset about the guidance, and I was upset about the guidance not because I think it’s necessarily bad guidance if everyone followed the letter of the law. There’s increasing evidence that vaccinated people transmit virus at a far, far lower rate. But I also think, realistically, the way human behavior works, if vaccinated people toss their mask, unvaccinated people are going to toss their masks too. And I obviously have no way of distinguishing those people.

So the CDC is in a tough spot, right? They have to go by the evidence, and they can’t have the nation locked down indefinitely. But it’s true, that step, I think, made things a lot more dangerous for immunocompromised people.

For people with suppressed immune systems, it’s still hard to figure out what’s risky, what’s not. Only one thing is clear: The health of everyone around you matters a lot. How did you feel when you saw the news last month that the U.S. is unlikely to reach herd immunity?

That, I think, was a stomach-dropping moment, because with herd immunity, there was a possibility of near eradication in the U.S. You’re never going to have total eradication. Someone might come on a plane from another country. But the prospect of this just indefinitely circulating is incredibly difficult because then the possibility of getting infected, even if it’s small, is always hanging over your head.

And I live in a city, in San Francisco, with very low infection rates. But urban centers are also porous. People visit San Francisco all the time. Now that mask mandates are dropping in California, I think the governor is planning on pushing for more tourism. And so the difficult thing is it’s always going to hang over my head that someone I’m sitting next to in a restaurant could be visiting from a state with much higher COVID incidence and could have COVID. So that latent possibility is not going to go away. And that’s, I think, quite difficult.

Yeah, I wonder if you can even picture yourself sitting indoors at a restaurant anytime soon.

I can’t picture myself indoors at a restaurant anytime soon.