Immunocompromised Americans’ Terrifying Reality During COVID

CHRISTIANE AMANPOUR: Turning now to COVID and in particular, how it impacts those who are immunocompromised and particularly at risk. Matthew Cortland is a lawyerand policy expert who’s faced challenges with Crohn’s disease. And they join Hari Sreenivasan us to discuss how the pandemic is affecting the disabled community.

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HARI SREENIVASAN: Christiane, thanks. Matthew Cortland, thanks for joining us. In this pandemic, I know it’s hard to discuss an entire population because there’s individuals within each population, but if you are immunocompromised or greater risk for hospitalization or harm from COVID- 19, give me an example of what life has been like.

MATTHEW CORTLAND, SENIOR FELLOW, DATA FOR PROGRESS: If you are one of the somewhere between 2.5 to 3 percent of all Americans, adults and children, who are immunocompromised, the pandemic has probably been terrifying for you. You know that you’re at some greater risk of getting really, really quite sick, if you should get COVID-19, and that’s including if you have gotten your vaccinations and your boosters, you’re still at this increased risk. And so, a lot of people in our community are forced really in order to protect themselves or a loved one that they live with, to really just dramatically change their lives because it’s just not safe to go out into the world. It’s not safe for them. You know, particularly right now for children under five years of age who are medically complex, who maybe immunocompromised, it’s a particularly terrifying time to have a medically complex child who is not eligible for vaccination or who can’t get vaccinated, there are some folks in our community who either can’t get vaccinated because of a medical contraindication or if they do get vaccinated, they don’t do what we call the jargon, zero convert their body, doesn’t mount a response to that vaccine protect them going forward. In those folks, really are just desperately trying to avoid, particularly during the surge of Omicron, this highly transmissible variant, they are just doing everything they can to avoid breathing the same indoor air of their people because that’s really the only way they have left to mitigate that substantial risk of harm to themselves or their medically complex child or maybe they live with an elder, they take care of a family member who is older in that other higher risk age group.

SREENIVASAN: You know, what you’re describing is what New York might have gone through in March of 2020. I mean, we’re really just kind of keeping ourselves indoors. You’re telling me that here we are two years later and there are still people having to live like that.

CORTLAND: That’s absolutely correct. And it doesn’t have to be this way. For so many of our folks, disabled and chronically ill and immunocompromised, this category of people who are at higher risk of a bad outcome, there’s poverty that goes along with disability often times in this country. Folks who are disabled are more likely to be impoverished, to be living in poverty. And so, even some of the measures that in March of 2020 folks were able to take in the city and elsewhere to protect themselves, things like having someone else do their grocery shopping, paying InstaCard or whatever company it maybe, that’s not an option available to many folks in the disability community just because of economics in our community tends to be disproportionately impoverished. And so, you’re absolutely right, it is still a high threat environment for many folks, but there’s this disproportionate poverty that goes with it that makes it really hard to take some very basic steps because we have, to a large extent, sort of been left on our own to fend for ourselves during this pandemic. There’s no organized response that centers the disability community to protect people who are at higher risk.

SREENIVASAN: But why do you think that is? Why do you think that does this population, as you described, it might be, what, 3 or 4 million people in the United States or more, doesn’t have a voice, doesn’t have a seat at the table?

CORTLAND: It’s really tens and tens of millions of people who have multiple underlying health conditions that put them — all of us at increased risk. And why haven’t we been centered in this pandemic response? And I think the answer, it’s complex and there are a lot of factors, but I think, fundamentally, public health and medicine are ableist. There’s a history of pervasive ablism in these disciplines. And by ablism, I mean, the sort of systemic devaluation of the lives of people who are chronically ill or disabled pr immunocompromised. You know, we have a sad and enraging history of ablism in public health. People with these medically these sorts of medically complex conditions have been viewed as disposable, really. And that thinking is unfortunately still pervasive amongst public health professionals and politicians and policymakers. And I think that has a lot to do with why the response has now been as protective as it should have been.

SREENIVASAN: So, give me examples of how your community is being left behind? I mean, what are policies where you’re not considered in the first place or what are effects that sort of social policy or public health is happening at a local level? Kind of personalize it for me if you can.

CORTLAND: There’s a great recent example in the guidance, the technical guidance that the Centers for Disease Control, that CDC issued around ending quarantine and isolation. They issued guidance for the general public and they issued guidance for healthcare professionals. The guidance for the general public tells folks that they can stop isolating and go about their lives, even if they have COVID-19 after five days if they wear a mask and they avoid immunocompromised folks like me and people who are at high higher risk because of a chronic illness or a disability. I don’t wear a sandwich board that says immunocompromised when I go to the grocery store or the pharmacy. CDC’s technical guidance suggests that average people on the street are supposed to know, just visually, who is in these higher risk categories when it’s often not apparent at all. And so, that’s what I mean when we’re not really being considered in the — even in the technical guidance from the premier and public health agency in the country. And it’s really — you know, it’s remarkable that two years into this thing, they are still not consulting with the disability community and experts about how to actually, you know, issue workable technical guidance that would actually protect people.

SREENIVASAN: Matthew, you recently tweeted that the Biden administration’s pandemic response is a, I’m quoting you here, “A disastrous failure that is killing marginalized people.”

CORTLAND: I personally rely on SSI for many years. I have inflammatory bowel disease that is very difficult to control and I was able to navigate that system because of my training. And for many years, I lived on about $700 a month. And was subject to program rules that said, if anyone helped me out by giving me a bag of groceries or helping out with the rent, I would lose one-third of my benefits. And so, I know what it’s like to struggle, to survive when you’re relying on that sub poverty, grueling and inhumane system that we laughingly call supplement security income. I know that, you know, there are statistics that the agency puts out every month. We know there are about 8 million American who are currently relying on SSI. And we know that the Social Security administration has the name and mailing address of virtually every person who relies on that program. The same is true for the millions more who rely on SSDI, that’s Social Security Disability Insurance, it’s the better known of the two programs. The federal government has the name and mailing address of virtually every impoverished disabled person relying on SSI and those who rely on SSDI as well, and could have chosen to at the very least send out these rapid antigen test kits and these protective N95 masks to this incredibly vulnerable population that because of the federal government’s own rule set does not have the resources to protect themselves in this pandemic. You cannot afford a $24 kit BinaxNOW kit when you are struggling to get by an $800 a month. You cannot afford to go to the store and buy a case of — you know, a box of N95 masks when you are struggling to put food on the table. So yes, the administration’s response has up until now been something of a disaster for those most vulnerable, those most at risk. Especially given how readily resources could have been targeted to these just incredible vulnerable populations, and they’re vulnerable in part because of government rules that just require people to be impoverished if they’re going to get SSI.

SREENIVASAN: What are you hearing people asking you to advocate for? What are the things in their life that they see need for policy change?

CORTLAND: Folks desperately want a COVID-19 pandemic policy response that doesn’t leave the disability community behind. It means things like having rapid tests that are accessible for low vision and blind folks. Because right now, that’s a major challenge. It means having masks that are available and adaptive. You know, we have been calling since the start of this pandemic for the federal government to just ship everyone, you know, highly protective N95 masks, PPE. And including, as part of that program, we really need more development of adaptive PPE. I think we finally have one mask with a clear panel so that folks who lip read can have access to those masks. But we have not seen any investment in sort of adaptive PPE or providing PPE to impoverished folks. You know, we finally got an announcement from the Biden administration that they are going to be making N95 masks available, but you’re going to have to go to a pharmacy or a community health center. And for disabled folks, that actually presents a number of problems, right? So, there are mobility issues, there are transit issues, there’s also just asking folk who is are at high risk to either take public transit in the shared air or go into a pharmacy or community health center, a place where sick folks are gathering to get access to masks. That’s not a strategy that is actually most successful way to give masks to impoverished disabled folks, right?

SREENIVASAN: In a strange way, I don’t think there is a parallel to walking a mile in anybody else’s shoes exactly, but there are millions more people who today know what it’s like to have basically a health scare with an unknown sort of start date and end date. So, I wonder if when you look at it, is there any kind of silver lining or hope? Do you think that there’s any greater empathy for your community now than there was at the beginning of the pandemic?

CORTLAND: It’s hard when more than 800,000 people have died just in this country and so many of those deaths came from my community to think about a silver lining. That the weight of the tragedy is just so heavy. And what’s more, we’re still not safe. But having said that, my hope is that we emerge from this pandemic with a society that is more inclusive and accessible and that it does not view chronically ill folks, including folks with long COVID, as disposable. Now, there’s going to be a lot of work that’s necessary to get from here to there. I don’t know if we will succeed, but I know that this is unlikely to be the last pandemic that this country or any country faces. And it’s vitally important that that shift that you’re talking about occurs. I don’t know how to make that happen. I know that there are a lot of folks thinking about it and working on it every day. But for me personally, it’s hard to think about anything other than keeping people alive right now. Because the need is so overwhelmingly desperate.

SREENIVASAN: There’s a lot of people, whether through COVID fatigue or whatever, they are saying, OK, I’m double vaccinated, I’m boosted, I’m almost through this thing. So, there’s sort of the heightened level of sensitivity and fear that we had two years ago has clearly dropped. I’m wondering how far behind are these communities that you’re advocating for in terms of getting the help that they need, to feel like they have control and that they can be functioning in society again.

CORTLAND: It is absolutely true, and I will tell you I’m tired. I am tired of making a risk benefit calculation every time I need to open my apartment door. And I have graduate training in this. I have the benefit of taking — you know, I have a book shelf full of like epidemiology and biostatistics books behind me. I am tired. And I don’t always know what the right thing to do is. And even with all of this training and experience, I want to be clear, if you get COVID, you are not to blame, right? This is — you know, COVID-19 isn’t a moral act. It’s a virus that exists to do anything, it exists to replicate. My own partner just recovered from COVID two days ago is when she tested negative for the first time in 10 days. She was isolating in our bedroom. There’s this sense that we are doing public health as a sort of individual, rugged individual responsibility thing. And that’s not how public health works. Public health is a collective endeavor that at its best protects the health of everyone involved. That’s not the approach we’re taking. And as long as we continue to fail to take that approach, chronically ill folks are going to be left behind. People are higher risk are going to be left behind. And so, there are any number of things we could be doing better than we’re doing. And as usual, disabled folks have to fight for it.

SREENIVASAN: Matthew Cortland, senior fellow, Data For Progress, thanks so much for joining us.

CORTLAND: Thank you for having me.