Consider This from NPR - As Masks Come Off, Immunocompromised Americans Feel Left Behind

Episode Date: March 1, 2022

The latest CDC guidance puts nearly 70% of the U.S. population in low or medium risk areas, and residents are no longer expected to wear a mask. In response, the vast majority of states in the U.S. have lifted or plan to lift mask mandates.While many Americans welcome the loosening of pandemic-era safety rules, people who are higher risk feel forgotten and left behind. Johnnie Jae is an Indigenous journalist and public speaker; Charis Hill is a disability activist; and Cass Condray is a university student. The three explain what it's like to be immunocompromised and chronically ill during the pandemic, and what can be done to allow them to better live their lives.In participating regions, you'll also hear a local news segment to help you make sense of what's going on in your community.Email us at [e-mail] more about sponsor message choices: podcastchoices.com/adchoicesNPR Privacy Policy

So the latest CDC guidance puts nearly 70% of the U.S. population in the green, which means those areas are considered low or medium risk and residents are no longer expected to wear masks. With Omicron, we had many, many more cases than we had hospitalizations. That's CDC Director Rochelle Walensky last Friday. And so many, many of our infections did not result in severe disease, did not result in increased hospital capacity. And it was in that context that we made this pivot. That pivot includes schools where masking is no longer generally mandated. In response, states like California and New York are planning to drop their school mask mandates in the coming

days, while others, they made the change immediately. The Maryland State Board of Education voted to lift school mask mandates all across the state. Even states with some of the strictest mandates have begun to loosen their rules. Oregon and Washington announced that mask requirements will be lifted indoors in public spaces, and that includes K-12 schools at the end of next week. As the Omicron surge continues to decline, many have been eager to ditch their masks. For many other Americans, though, ditching COVID safety precautions is a really scary prospect. I have been living with lupus since I was nine years old.

That's Johnny J. She's an indigenous journalist and public speaker and founder of the website A Tribe Called Geek. She says lupus has affected her heart, her lungs and kidneys. I do have lupus onset diabetes and right now I'm just getting over shingles. So it's kind of been a nightmare. J says from the beginning of the pandemic, she knew that she would have to be especially careful. I was told right off that if I were to get COVID, my chances of survival would be less than 15%. Consider this. Millions of people in the U.S. have weakened immune systems, illnesses or disabilities that put them at higher risk for severe coronavirus

infection. For them, quarantine never ended. While many Americans welcome the loosening of COVID-era safety rules, immunocompromised and high-risk patients feel forgotten, left behind. From NPR, I'm Elsa Chang. It's Tuesday, March 1st. Support for NPR and the following message come from MongoDB Atlas. Get out of the business of managing databases with a leading multi-cloud application data platform loved by millions of developers.

Start free and scale confidently with out-of-the-box best-in-class security, performance, and resilience features. Join thousands of organizations that trust MongoDB Atlas for their mission-critical applications and visit mongodb.com slash NPR. It's Consider This from NPR. The Omicron surge is waning, COVID hospitalizations are down, and average daily case numbers have significantly fallen. But the U.S. is still seeing 60,000 new COVID-19 cases per day, and the country's death toll from the pandemic will soon hit one million.

For people like Cass Condre, the risk is still high. I live with ulcerative colitis, an autoimmune condition in which the colon and large intestine are unaware of how to perform, function properly. Condrey is a 20-year-old college student at the University of Central Oklahoma. He can't afford to get sick, even with a cold, he says, because the pain and inflammation flare up when he does. To manage his condition, Condre's on a medication that suppresses his immune system. And as if that weren't enough, right at the beginning of 2020, Condre experienced a sudden cardiac arrest. He was in a coma for 37 days. Being on a ventilator for that long has left my lungs and my respiratory system more vulnerable than the average person's. Some Oklahoma cities had their own local rules for masks, but Oklahoma Governor Kevin Stitt never instituted a statewide mask mandate, which made going out in public pretty terrifying for Condre.

I wonder if this is the time a COVID infection will land me back on a ventilator because I know how hard it is to just sit there and not be able to breathe. Condre says he needs surgery to install a pacemaker now, but the surgery keeps getting pushed back because of the pandemic. It's like waiting, waiting, waiting, and hopefully nothing happens. And nothing has happened, thankfully, to my heart. It's like you're taking time bomb, you know? In Sacramento, California, disability activist Carice Hill was also sick early in 2020 on top of a different chronic condition.

I live with a condition called axial spondyloarthritis, a systemic inflammatory disease that primarily affects joints and where joints connect. And I have delayed a big surgery for over a year now. Hill says that surgery is now scheduled for sometime this March. But because California has decided to relax the mask mandate, I'm not sure if I'll have to postpone that surgery again. You see, Hill worries that another surge could once again limit hospital capacity or compromise the surgical team. And like Condre, Hill takes medication that suppresses their immune system. So they've had to stay isolated, sheltering in place, even after getting vaccinated. The only time I leave my home

are for necessary in-person doctor visits. And doctors are the only people who I have physical contact with. Now, think back to the early days of the pandemic. Remember when people sang songs about washing hands, when people were wearing masks wherever they went, using Zoom to socialize and demanding flexible remote work accommodations? I asked if, at least during that part of the pandemic, if it felt like the world was trying to share some collective responsibility for staying safe. This is Johnny, by the way. It did feel a little less lonely. And also there was a lot of resentment as well,

just how fast everything was able to be more accessible through having online work options to be able to work remotely. You mean you felt a little bit resentful watching the world shift so quickly when it affected them? Yes, exactly. When it affected them, because, you know, previous to the pandemic, you know, there were times when you would lose out on work opportunities because those options weren't available to you as a disabled person. You know, they would tell you that it wasn't possible, it wasn't cost effective.

But all of a sudden, you know, when this pandemic hit, suddenly it was a possibility and it happened so quickly. And it was a little bit of a relief too, because a lot of my work is public speaking and it's a lot of in-person events. But because they were moving over to virtual options, you know, I was able to pick more work up and, you know, we were able to make it through that first year of the pandemic. But then year two started and halfway through, you know, they started to pull back these remote options. What about you, Carice? Was it the same for you, at least at some point during this pandemic. I agree with Johnny. Initially, I would say that I was naively hopeful and optimistic when accessible things like remote education, remote work, remote healthcare options, masking, distancing, stay home if you're sick were initiated. But like Johnny, I felt resentful because for decades, disabled people have fought for these same accommodations.

It felt like a slap in the face as a disabled activist. And I was naively optimistic that these precautions would continue beyond the pandemic and be normalized. But we're seeing the opposite of that happen. So when did this feeling of, hey, maybe we are all in this together, when did that feeling start to fade? The most intense shift was when vaccines came out and the CDC was recommending that high-risk people, you know, immunocompromised people of all ages be prioritized at the same time. And California decided to prioritize people over 65, but not immunocompromised people. And there was a solid three weeks to a month that disabled people in California were fighting for that prioritization. And I remember being asked by a

reporter last February in 2021, what I would feel safe doing after I was vaccinated. And I said, I just want to like shop for my own groceries. Right. Well, Cass, I want to turn to you. If remote accommodations end up going away entirely at your school, what do you think you're going to do? So I'm in a complex situation because I'm also in a lot of labs, so laboratory classes. So chem lab, there's no way to make an online accommodation for that. You have to show up unless you have an active case of COVID for labs. You have to come. what about having an active case of being immunocompromised i know it's i mean i really don't have many words for like how it works because i have to you know get these courses done like it's not a core requirement but it's really just a not great environment to be in if you are high risk.

Certainly not. Well, that segues into my last question for all three of you. Because the thinking now is COVID will never be completely eliminated. The world will always live with some form of COVID, which will always present some risk to immunocompromised people. So if COVID is here to stay, what are some things other people can do that would allow all of you to more fully live your own lives? It's Cass. I guess I would just make sure you knowingly do not try to hang out or like do anything while you are sick or may think you are sick.

Because every time I get sick, there's a chance that my ulcerative colitis will go back into a flare. And that is not a very fun time. Getting sick can trigger a flare. And obviously everything that comes along with being sick in a body that is already very medically fragile and complex is quite terrifying. So I just really wish people would not come to school or work or social situations or things like that sick. At a very minimum, stay home if you are sick. Johnny, what about you? What would you like to see other people do to allow you to expand your freedom a little bit? You know, wear a mask, get vaccinated, you know, socially distance and be mindful and respectful of the people around you.

And that means making changes. And these changes aren't going to be temporary. They're going to have to be permanent changes that we're going to have to adjust to. And those are being, you know, masked up in public. And, you know, if it's being able to provide remote options for work and for education, and, you know, they also need to be investing in upgrading, you know, the buildings, air ventilation and filtration systems, especially in schools and medical facilities. And they really need to start prioritizing people over profit. You know, that's their priority. What about you, Carice? I think just reminding people, normal has never been good for disabled people and returning to

the normal that we had pre-COVID would not be good for disabled people. I think the biggest changes that I would like to see are on the bird's eye view, which is health policy that centers the people who are most impacted by COVID. Because if we center those most impacted by COVID where everyone would benefit. In the disability community, we often say nothing about us without us. And so I would ask that disabled people are at the table moving forward, making decisions alongside epidemiologists and public health leaders, elected officials, because we know how to take care of complicated health issues. It's what we do for a living. We know how to do it with limited resources

because the Social Security Administration doesn't pay us enough to survive on. I mean, we are the answer if only we could be welcomed at the table. That was Carice Hill, Johnny J, and Cass Condrey. Thank you to all of you so much for sharing this time with us. Thank you so much. Thank you. You're listening to Consider This from NPR. I'm Elsa Chang.