Immunocompromised People Left Behind As Covid-19 Restrictions Are Lifted

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CARLY PACHECO, HOST: From KVMR and in partnership with FREED, this is Disability Rap.

JILLIAN PARRAMORE: What really opened my eyes is how dispensable my life is.

PACHECO: Today, as pandemic restrictions are being lifted, we look at how immunocompromised people are faring as the country races to return to a pre-pandemic normal.

ED YONG: A lot of the people I’ve spoken to have just felt abandoned by their government, by their friends and families, and by the rest of society.

PARRAMORE: It felt like it was on everybody else’s shoulders to keep me safe – like, the community – and nobody wanted to. But I would do that for my community.

PACHECO: That’s all coming up right here on Disability Rap. Stay tuned!

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CARL SIGMOND, HOST: Welcome to Disability Rap. I’m Carl Sigmond with Carly Pacheco.

As mask mandates and other Covid-19 precautions are being relaxed across the country, we spend today’s show looking at a group of people who are being left behind as the country races to return to a pre-pandemic normal. There are about 7 million people in the US with compromised immune systems, making up just under 3% of the population.

PACHECO: For many of these people, the risk of severe illness, hospitalization, and death from Covid-19 is substantially higher than it is in the general population, and since their immune systems are compromised, they’re at a much higher risk of contracting the virus, even if they’re vaccinated and boosted. We wanted to find out more about what immunocompromised people are experiencing now and what they’re calling for.

SIGMOND: We’re joined by two guests. Jillian Parramore is an educator, writer, speaker, and disability rights activist based in southern California. She has a compromised immune system and other disabilities. Near the start of the pandemic, she was laid off from her job as a school district adviser because she couldn’t work in person. Jillian is also a Board member of Disability Rights California.

PACHECO: And we’re joined by Ed Yong, staff writer at The Atlantic. He recently wrote a piece, headlined The Millions of People Stuck in Pandemic Limbo: What does society owe immunocompromised people? In the article, he documents the challenges immunocompromised people are facing right now and amplifies their calls for systemic change. Ed won the Pulitzer Prize for Explanatory Reporting last year for his coverage of the Covid-19 pandemic.

SIGMOND: We welcome you both to Disability Rap. Jillian, I want to begin with you. Can you tell us a little about your disabilities and then tell us what life has been like for you during the pandemic?

PARRAMORE: I’m on the autism spectrum. I don’t like to categorize where I am on the spectrum because I feel like there’s a classism in that, but it’s never where everyone thinks I am. I also have cerebral palsy – spastic cerebral palsy. And I have epilepsy, and dyslexia, which is – like – the hidden disability that really gets me.

Right before Covid, I had done a TED Talk about inclusive societies, and how we are not doing a good enough job about including people with disabilities, and how it would benefit everyone, not just the disabled community. And the irony is: right after that, Covid happened, and I was like… I hated to be – like – everyone’s mother, but I was like: I kind of told you so. It’s a bummer when you don’t feel included in life, and a lot of people were experiencing that. So, at first, I felt like: oh, people are going to understand what I’ve been experiencing as a person with disabilities and maybe have a bit more empathy.

So, when it started shifting and I no longer had a job, and I had to look for more work, because I wouldn’t do in-person, because I knew that… My doctors had informed me that, if Covid wouldn’t get me, it was going to be pneumonia. So, they made it very clear that it was wise for me to just stay home.

And I had just bought this house with my partner, and I was like: how are we going to afford things? Thankfully, I was able to go more of the disability activism route and find jobs that way. However, that was a fluke, and I know that isn’t everyone’s situation.

And I spent from March of 2020, I believe, until – maybe, like – a couple months ago, home. I didn’t have contact with anyone. What really opened my eyes is how dispensable my life is. When hospitals started overflowing, my care was put to the side. My regular care for my disabilities was put away, because they didn’t have enough space. And I was no longer a priority – not that I ever was to begin with, but this made it more apparent how dispensable my community is.

I remember at the beginning when they did the non-resuscitation [order] for people with disabilities that came into the hospitals because they just didn’t have enough people. I was horrified. I felt like I was being left behind. And as an indigenous person, and as a Jewish person, my family makes sure I never forget what my people have been through. It just felt like it was happening all over again. I felt like it was on everybody else’s shoulders to keep me safe – like, the community – and nobody wanted to. But I would do that for my community.

I was one of the first to get vaccinated in April when it came out. For me, it was devastating that it was my caretakers – like, my in-home support services – [who] were applicable to get the vaccine prior to me, even though I have a partner that works out in the community and can bring that back to me very easily, and she can’t work from home. I still felt like I was the last one to be thought of, the last one to get back to society. And then when the anti-vaxxers came out and didn’t want to get vaccinated, and then the variants came out, it just felt like my opportunity to go back into society became further and further away.

I ended up having three people over for new year’s, and the job was to get tested prior to coming. And it was going to be one of the first times I had seen people in person in – like – two years. One of them did not understand the assignment and did a home test in a different state before getting on a plane, and coming out here, and coming to my house. And they had Covid. And even though I am vaccinated and boosted, that’s not enough for someone like me. And so, I was the only one that got it.

I have long Covid now. I already have a hard enough time walking with my cerebral palsy, and my tools, and stuff like that, but now I can’t really do much of anything. I’m fatigued all the time. It’s been since new year’s. I just want people to understand what it feels like to have long Covid, because we don’t really talk about it. I’m surprised by how many people I talk to who don’t know what long Covid is and the effects it has on me. I can’t do anything anymore that I used to, and what I used to do was barely anything because I’m home.

Now, my family’s having to help me out, and that wasn’t what i wanted. I bought my mom a house close by to me and my sister because generational wealth isn’t a thing for us, and I was so proud to finally be able to do that for my family, and take care of them for once. And then I got Covid, and now they have to take care of me again. It just feels like an endless cycle for me.

In a capitalist society, I am taught that I am not useful if I can’t work or if I can’t contribute to society. And I feel that more and more every day the longer that I have Covid. However, this was not my doing. I feel like it has opened my eyes to how we treat our elderly and how dispensable we treat those of us who can’t work. It’s pretty shameful. We really should be pretty disappointed in ourselves as a society, honestly, at this point.

PACHECO: Jillian, I think you just really pointed out a lot of the disproportional effects that we’ve seen this pandemic have on people with disabilities and older adults: higher rates of infection and death in nursing homes and any other congregate settings, the crisis standards of care that you mentioned, that literally de-prioritized people with disabilities lives, people with disabilities having to fight really hard to get priority access to the vaccine. You mentioned that.

Ed, I’m curious: what inspired you to report this story on how immunocompromised people are faring now that things are opening up?

YONG: One common theme in a lot of my reporting throughout the pandemic has been trying to focus on those who’ve been left behind as society processes the crisis of Covid, and I think that’s been especially the case the longer the pandemic has continued. I think that, at the beginning, a lot of inequalities were obvious right from the start, and the disproportionate burden borne by elderly people, by disabled people, by black and brown people in this country.

But I think that those inequities have got worse, not better, since vaccines have become available. You know, the vaccines are fantastic. I am, myself, vaccinated and boosted. But in terms of access, they have fallen along the same lines of inequity that have plagued the rest of the pandemic response. And certainly now, there are a substantial number of Americans who are in the boat that Jillian described – who have been vaccinated, and boosted often, but do not enjoy the same levels of protection that other people do.

And I think that that line of immunological inequity falls along a lot of the other axes of inequity that we’ve talked about. So, especially now, at a time when so much of the country seems hell-bent on returning to quote-unquote normal, I think that the crucial question of the pandemic – and really it has always been a crucial one – is: who bears the risk that remains? And trying to answer that question and to actually find out about the lives of such groups, I think is one of our most important challenges in terms of pandemic coverage right now.

PACHECO: Jillian, you might give us a picture of what’s the reality for someone who’s at heightened risk, when precautions aren’t being taken by society as a whole, but only by those that are at risk.

PARRAMORE: It feels a lot like when I tried to go to college, when I tried to get a job, when I tried to live independently, when I tried to get my own health care, when I tried to do all of those things. This is exactly what this feels like to me right now, which is they leave it up to you. They make it seem like it’s your rights and your freedom to choose what you want in life, yet there are no tools and access to do those things.

It was just breathtaking how quickly companies, and services, and education [were] moved to online and completely accessible, when I have been battling for that right and quote-unquote privilege for 20 years. Yet, when all of society needs it, we can pull it out in a month. We can figure that out. We can do those things.

And so, when I look at this and how it’s still resting on me… Does that mean that I have to have everyone tested prior to seeing me? Well, the Omicron [variant] doesn’t come up for home test. So, does everyone have to get PCR tests? How long are the lines for PCR tests? Am I being too much of a burden for people to ask them to do that? Do I have the right to ask that of people? Will I be alienating myself further from society by expecting these things to keep myself safe? Am I being selfish somehow now? All of these things come up, because… Then, we have the portion of society that doesn’t even want to be vaccinated, which is their own right, and they have that decision. But why are we lifting mask [mandates] right now when we know it’s gonna get worse again?

SIGMOND: There is so much in what you just said that we could unpack. Ed, I want to bring you in here. One thing that struck me about your reporting throughout the pandemic is your emphasis on this tension between the me and the we. Could you comment on that in light of what Jillian just said? And also these quote unquote accommodations that Jillian just spoke about – the working from home, you name it – they benefit all of society.

YONG: I think that the pandemic, right from the start, has always been a collective problem, and the collective threat has always been greater than the individual threat, in the main. So, for Omicron, for example, theoretically, yes, it is milder than previous variants – like delta – but it is also extremely transmissible. So, it spreads very quickly, and it inundates enough to still cause significant illness, and disability, and death, and to overwhelm the healthcare system.

Now, that calculus becomes a little different if you’re immunocompromised, because your own personal risk is still really high, even – in many cases – after you’ve been vaccinated and boosted. So, it varies considerably depending on how exactly one is immunosuppressed. At an extreme level, there are studies showing that people who have organ transplants, for example, who are on immunosuppressive drugs… About half of them make almost no antibodies after they’ve been vaccinated and have a much higher risk of breakthrough infections. If they do have breakthrough infections, they have a one in ten risk of dying, which feels extraordinarily high.

So, their individual risk is still very substantial and certainly very difficult to grapple with… to make sense of. It might not be one in ten. The risk of dying is much less than one in ten for people with less severe immunosuppression, but the point is that it’s very difficult to wrap your head around.

There are no specific studies in a lot of cases to tell you what your risk is, and even if there are, those studies are at a population level, rather than an individual one. So, a lot of people I spoke to are trapped in this limbo of being unable to really grapple with their risk.

And so, their lives are very much dependent on the choices that everyone else is making around them. I mean, that’s sort of true for all of us. As I said, the pandemic has been a collective problem, but it is especially true for immunocompromised people, including the people I’ve talked to.

And it is hard, therefore, to see things like the CDC’s new guidance, which really does shunt the burden of dealing with the rest of the pandemic onto people who are at the highest risk. If you look at the CDC’s page about prevention steps you should take for areas at, say, medium risk, it says if you are at a high risk for severe illness, talk to your healthcare provider about whether you need to wear a mask and take other precautions. Again, the message is: it’s all on you. And it doesn’t really grapple with the fact that a lot of people don’t have healthcare providers, that talking to a healthcare provider can be expensive, that getting a mask and other protective equipment can be expensive.

A lot of the people I’ve spoken to have just felt abandoned by their government, by their friends and families, and by the rest of society. And I think we heard a little bit about this already. but it didn’t have to be that way. And for a while… I don’t think any of the people I spoke to had an easy time in the pandemic, but certainly, there was a moment in which, as Jillian said, it seemed like the rest of society was starting to understand what things were like for people who had to take more precautions about their health beforehand, who had more constraints on their choices beforehand.

And you could see two different paths from that. Either society could have learned and said: actually, no. We really can build a world that is less disabling and more enabling for disabled people if we really put our minds to it. And we sort of have already taken the first steps towards doing that. Or you could say that is not the world we want and we’re going to roll things back. And I think it’s really hard for a lot of people I spoke to to see that a lot of people are opting for the latter, and doing so in a way that is billed as a return to freedom and the expansion of their freedoms, but really just shut down the freedoms of a lot of the immunocompromised people I talked to.

Lindsey Ryan, a doctor who’s immunocompromised at UCSF, explained this really well in an interview I did with her, where she talked about how her set point for feeling safer in the world is just perpetually lower than the set point that the rest of society seems to have adopted. So, when cases start falling again and community transmission starts dropping, she feels more able to do things like go to the grocery store and be a part of society. But it’s exactly at those moments when restrictions start lifting, when masks come off, and when things feel less safe again. And even if – you know, in the past, that’s led to surges – but even without that, it removes, it negates some of that extra feeling of security that someone like Dr. Ryan gets from those moments.

It’s a horrible situation to find oneself in, and I think it’s horrible on a couple of different levels. There’s a very common trope that I hear when talking about this to people who are not immunocompromised, who are not disabled, and it goes like: well, we didn’t make accommodations for this before Covid, so why should we be expected to do so now? People died of… There was flu. There were other infectious diseases, and so on.

And I think the answers to that are clear. Firstly, this is a new infectious disease burden, on top of the ones that we already had. It is a more dangerous virus. It is less so for a lot of vaccinated people, but not for a lot of people who are vaccinated and unprotected, as many immunocompromised people are.

But also, we could do better. We have the ability to save… and just prevent more illness from respiratory infections, to save more lives from respiratory infections. And the last few years have shown that that is actually possible. And so, the trope I think is wrong. The trope is often: immunocompromised people are holding the rest of society back from returning to this shiny normal that they long to recap.

But I think it’s the opposite. I think that it’s this rush to normal that is forcibly dragging immunocompromised people back to an old normal that wasn’t working for them, and that we had the option of moving beyond. And again, the tropey way of framing this is in terms of permanent lockdowns or masking. Almost no one I spoke to talked about that, right? What they talked about was things like better access to testing, better ventilation to protect the air around all of us, better access to treatments, to therapeutics that could help to prevent them from suffering the worst excesses of a Covid infection. No one talked about a permanent lockdown. Everyone wanted to get on with their lives, too, to recoup their own sense of normalcy, of happiness, of joy.

There were some accommodations that helped. Remote working options helped. Remote schooling options helped for immunocompromised kids. And a lot of those things are going away, too. And I think that’s adding to that feeling of abandonment, of being pulled back into a situation that they are uncomfortable with, with no thought or concern for the residual risk that they are now expected to single-handedly shoulder.

PACHECO: Thank you, Ed Yong, your work has provided a window to the experience of those now left shouldering this risk. We will link to your recent piece in The Atlantic at our website, FREED.org/disabilityrap. And thank you, Jillian Parramore, for sharing your personal experience. We will also link to your TED Talk on How to Be Included at our website, as well.

And that does it for this show. Disability Rap is produced and edited by Carl Sigmond. Special thanks to Courtney Williams for her support. To listen to this show again, go to FREED.org/disabilityrap or wherever you get your podcasts. I’m Carly Pacheco with Carl Sigmond for another edition of Disability Rap.