From our reporter’s notebook: What we’ve learned in 2020, and what’s ahead, with T.K. Dutes

Dan: Hey there— we’re going to do something kind of unusual for this episode. It’s mainly just one interview. And I’m the one being interviewed. It’s a chance for me to look back, with someone I like and trust, on what I’ve learned this year, and to look ahead. 

So in a minute I’m going to hand things over to TK Dutes. She’s a radio host and podcast maker I really respect, and I got a great big dose of her work this fall, when she put out TWO amazing stories in 24 hours. 

One was the first episode in a podcast called Open World— it featured an author named NK Jameson reading and talking about her work. Which I loved. Oh, and like a few hours after I heard it, NK Jameson won a MacArthur Genius award— which made me feel SUPER in-the-know.

AND that same day, TK hosted an episode of NPR’s Life Kit, about how to do a career change. And a big chunk of the episode was about her transition to becoming a radio producer after 15 years as… a NURSE.

And I was like:  OH! I think I know who I want to debrief 2020 with. 

This is An Arm and a Leg, a show about the cost of health care. I’m Dan Weissmann. I’m a reporter, and I like a challenge, so my job on this show is to take one of the most enraging, terrifying, depressing issues in American life and bring you something entertaining, empowering, and useful

And here to help me this time out— to actually take over for most of this episode— is TK Dutes!

TK: Hello.

Dan: Hi. Hi, thank you so much for doing this.

TK: I’m so happy to be here and you know, what’s wild? So like that whole NPR life kit about my career change, when you hit me up,  I was like, Oh my God. I was just waiting for someone to ask the question about, like, how does being formerly a healthcare professional play into radio.

And also like, when will you ever get to meet the two? And then when you said, Hey, you want to come on my show? I was like, yes, I do. I’m so happy to be here.

And the craziest thing was that when I was a health care professional, I was doing radio at the very same time— but like slow drips, right? And because I needed the flexibility, I took a nursing job that did not provide insurance. I was working for. I think it was like 16 or 17 years, and  not being insured as a healthcare professional. It was the most official unofficial job for so long, but it’s the only one that afforded me, you know, the money to pay for school and the time to learn things about radio on the side.

Dan: Oh, my gosh. You.

TK: And then I quit. Yeah. So it was just

Dan: That’s a, that’s a, that’s a big sacrifice. That’s a lot.

TK: I was eating garlic and drinking orange juice for so long. 

Dan: Oh 

TK: So as a grownup, I just got insurance last year.

Dan: Oh my God. Oh my gosh. . 

TK: So your show is doing a lot for me.

Dan: Oh my gosh. Oh my gosh.  That’s I mean, that’s, that’s a lot, that’s a lot. And  it’s a lot of risk. I think of people  doing different things, right? Like taking time out of earning, taking out loans, that’s one kind of like risk encumbrance and you were doing it a different way

TK: It was just like the risk was happening in the moment. And I was just, I think what happened was 17 years ago, I was young enough not to care. Right? I was young enough to feel like I would never die. I would never get sick or whatever. And now I’m not, I’m a grown grownup now. And it turns out, uh, let’s just say 39 is the year that everything starts to break.

So I’m glad I have a little space. A little something now, but I think I would have loved having your show in my life that time. And so I’m just glad to be here. And you make me smile on this show that’s so scary with my avoidant personality that doesn’t want to do paperwork or call people.

TK: So I have so many questions for you. but before we get started, I wanted to ask you, like, how are you?

Dan: Well, thank you.

TK: That’s a loaded question

Dan: Thank you so much for asking. Basically I’m, I’m good. You know, making the show feels really good.  I’m really, really, really, really lucky. Yeah. And all of the various forms of privilege that have always informed my life are like absolutely showing themselves.

And so like I work from home.  My family is here. Right? Nobody in my immediate circle has been in dire trauma, knock wood, you know. So it’s: living in these weird conditions is an adjustment, but way easier for me than for so many people. Um, and I have, the work that I get to do feels super meaningful.

And so it’s kind of like, I just run my life. and it feels like all one thing. It’s like doing the show, managing myself so that I can kind of be healthy enough to do it like emotionally and physically and whatever else and like in okay shape, and managing my life with my family— and like I kind of run the kitchen, so like making sure we’re all fed. And like that we clean up after ourselves. Cause we’re all here all the time. It’s weird, it’s compressed, but  man, uh, yeah, I’m super lucky and we play boggle with my mom every night, still on zoom.

And so you know, I just want it to keep going. Like, I feel like since the beginning of the pandemic, I have felt like, man, I have a good, and how can I, you know, preserve it and, and find some way to pay it forward.

TK: You know, the whole first season of your show, you and your wife were trying to figure out how you were going to get health insurance— like, good health insurance— if you were both working for yourselves.— and I know you came back to that question just last week. Your story reminds me of like the different—when you have to get used to a different life.

It reminds me of like me—like I said, like I literally just got insurance last year when I got a full time corporate gig—but what I was remembering when you were telling the story was like how I was living before for so long. And which was like, just like life hacks, right? Like, okay. So, uh, I need to check on my like women’s health and stuff. Where can I go? So then you’d like, get on Google and you look up, okay, well, Planned Parenthood and all these sliding scale places.

And you just tell them, you know, how much you don’t make. 

And the difference between the, the care and the facilities are staggering. Cause I would go to these places that were depressing. That would make you not want to come back because of how sad and just not, it was just not a nice place to go receive health care, tight? Generally.  

And they do their best to put up like a “Hang in there!” poster— but like, that’s it right? A “hang in there,” cat. But now, with the Privileged People Insurance, I went to the doctor’s office. It’s at the top of —like, I see the statue of Liberty outside. I see the water and I’m like: Am I… ? Is this what it feels…?  Am I wealthy now? Is this what it feels like? And the disparity, every time I go now still, it’s still so new to me that it, it kind of weirds me out

Dan: Yeah. Wow. Wow. Yeah, yeah, yeah.

TK: With all this, like what are the most surprising feelings you’ve had during the pandemic.

Dan: That feeling of the first few months of just being on absolute high alert all the time. Like there was a feeling I don’t remember exactly when it faded.  but it was like the first few months were just like this feeling of like everything….

The image for me is coming home from the grocery store— you know, we would like put in an order,  go pick up our things and come back and be like, We didn’t get the something. And I don’t know the, you know, the, you know, my coffee.  And I was like— AAAH. And I would like have a freak out that would last the rest of the morning and be very unpleasant to be around.

Cause it was— I mean, whatever. We had other food to eat in the house. Like, I could make scrambled eggs. We weren’t going to starve. But it was just a feeling of like: I did all the planning. I did all the, we did….  Like that was—I really lost it there over the shredded mozzarella cheese that didn’t come in so I couldn’t make the pizza I had in mind.  like I really had quite a moment there. 

TK: Basically you’re getting more self-reflective

Dan: uh, yeah, (laughter)

TK: Yeah. 

Dan: I don’t know. I don’t know, but once that, that feeling of like high-alert all the time—these days I’m like, okay, they didn’t come. Um, you know, I can live with it. But everything does require a little more planning, having to kind of be reflective about what I need or what my family is going to need, what’s going to happen  because you don’t have like—You know, if I feel like it, I could just go do this.

I could just, uh, I’m feeling down. I think I’ll just go, go, go to a bookstore. I’ll go, like, I’ll go ask a friend if they want to have a beer, I’ll go, you know, do whatever. Like no. Everything has to be decided and planned and from a limited menu. Um, so get clear about what. You know what you need.

TK: Are we living the new normal right now?

Dan: I think about that a lot.  I was listening to super early episode from, during the pandemic and talking with Sabrina Corlett who runs a center on health insurance at Georgetown, she’s a lawyer.

She keeps track of all the laws and she was helping us understand, what’s covered, what’s not covered Congress passed laws, saying COVID tests are covered. And at the end of that conversation, I was like, so how are you feeling? She was like, I’m really worried. And she said, she was worried about where we’re going as a society. that we had all these disparities going in and how much are they going to get amplified?  because the pandemic was showing us where so many of the disparities were and were we gonna, you know, pull together and understand that our social contract. need some looks, and create some version of a more equitable social contract, um, or were we not? And she said, you know, the, the world without that looks a little dystopian,

TK: Yeah. Where —do you think we’re at dystopia currently? Or are we on the brink of …

Dan: It doesn’t look great. I mean, a week or two ago we talked with, uh, this guy, Andy Slavitt who helped run health care they’re under Barack Obama and he’s connected with all these people in the Biden administration,  and I was like, what do you see? Are we gonna get there? And he basically, you know what I took his answer to be was like, no.  I think about that a lot.

Okay, there’s a vaccine— you know, as we speak,  it’s like the day one of  somebody is going to get a needle in their arm and it’s beginning there are some provisions, for like pretty much everybody did they have access  to a vaccine  without that being a major financial hurdle, although Sabrina Corlette who we talked to in those early episodes, published something just this week indicated like, yeah, there’s gaps there.  but there’s also all the other divisions and disparities, you know, that does not seem to be a lot of will. To shift the nut innovating, like starting with our healthcare system. Right. We’re not looking at a great big overhaul of that. And as you, you know, as you just said, like you’re, you’re experiencing that divide in a new way right now you’ve crossed over, right? Yeah. 

TK: it. It’s interesting. . And I think about it also, I mean, you know, I’m the, I’m usually the race guy in the room. Yeah, surprise. Um, you know, and I, I think about the new normal there, and I’m like, it’s never a new normal for marginalized communities because it often hinges on whether the thing affects the majority.

Right. And, and for me, usually the majority is white people. So when COVID gets bad enough or is, is it bad enough now that like, White people are so incensed that we need to change things. Or, you know what I’m saying? Like, I think of like, I’ve always been living this normal. This is not a new normal for me.

The disparities the gaps they’ve always been there and there’s never any interest in fixing them until it affects the majority. 

Dan: Of course these are a LOT of gaps — but I’m always thinking of the gaps in our health care system, how much it costs. So that’s where I bring the conversation right after this.

This episode of an arm and a leg is a co-production with Kaiser health news. That is a nonprofit news service covering healthcare in America. Kaiser health news is not affiliated with the big healthcare outfit. Kaiser Permanente will have a little more information about Kaiser health news at the end of this episode. 

So, TK was making the point that our society is full of disparities, full of gaps, broken-ness— and fixing them only becomes a priority when they hit people with privilege. I said that from what I see, from my reporting, you might expect we’d be past that kind of tipping point. 

Dan: I mean, just with healthcare,  it affects the majority now. You know, for our last episode, I talked with a woman who studies insurance from the Kaiser family foundation. And she pointed out they did a study where like 50% of people with employer sponsored health insurance have deferred or skipped something they need medically in the last year because of money.

And that’s, again, that’s the subset of people who have jobs, where the employer provides insurance, which leaves out a ton of people. So. If half of the people with what we think of as like the good kind of insurance  are saying like, I can’t actually afford the treatment that I know I should be getting.

Then this is the majority, this is all of us.  So, okay: we’re all in trouble. What are the mechanisms by which we actually, you know, grab the steering wheel and do something about it…?

TK: I think the stories you’re telling are super important and the people need the information. I’m wondering if we’re expecting, you know, all these, all these folks. Do you have like superheroes on your show, basically everyday superheroes, they come on, they tell you about how.

You know, they had an illness or their, their loved one had an illness and how they challenged the system and they fought, or they came from the brink. You had, uh, Katelyn in Florida who came from the brink of COVID to then fight bankruptcy. Right? Like, are we expecting too much from you?

Dan: Yes. Yes, yes.

TK: I’m so angry.

Dan: Yeah. Yeah, yeah, it’s two ways to hear these stories, right? And one of them is like, okay, heroism exists. It’s a thing. And I talk to people all the time who are doing this, where we’re living regular lives. Um, and the, other is like, Oh my God, that’s way too much to ask of all of us. That’s insane. That’s awful. That’s —you know:  I’m so angry. 

TK: how do we keep them encouraged? , how do you drag someone out of the pits of that despair? Like how do we keep the good energy?

Dan: it’s a super good question. I don’t exactly know, but we had this episode recently where I talked with somebody who’s like a self-defense expert and  their advice was very holistic, right.

That kind of self-defense is, is kind of taking care of yourself , setting boundaries, keeping your peace of mind so that you can be effective .  you asked like how do we keep them encouraged? I’m like, Oh, well, how do I keep myself encouraged? That’s my that’s the whole question of the show.

TK: Yeah. 

Dan: Talking to people who are experts in that is going to be a thing I’m going to keep wanting to do. Asking that question of people who are these superheroes, who are making it work one way and another. But like getting right into it of like, how do you make this work?

You know, what’s your. Kind of spiritual regimen essentially. 

TK: So I think I want to go to the listener questions. I have, uh, a few— I kind of went through your inbox a little bit. If you don’t mind 

Aaron, whose cousin has a teenage child  who was care-flighted a few days ago to a children’s hospital in Dallas with a  brain bleed.

“She’s going to have brain surgery any day. Now she’s got a lot of PT and bills in her future. I’d love to be able to send them some easily digestible resources to help keep this from ruining them financially. Do you have anything put together like that?

“I can’t tell you how meaningful it is to me that you’re doing this. You’re a force for change and I’m excited to see more people get on board.”

Dan: that is so nice. That last part. And the first part, I’m just like, Holy crap.  I mean, I feel like this is really important, right? To get a really, get, get some easily digestible advice that people can follow.

And it’s hard because we have a,  non-system,  there’s no one thing like the health care system, like you’re in right now. TK, you know where you’re at?

You, you have this fancy insurance, we have access to rich people. Healthcare, you know, is very different from the healthcare system that you were in previously and the strategies for navigating it are different. 

That’s one great big macro divide, but really everywhere you go, every insurance company, you look at every place you could get treated has their own system, their own way of doing things.

So there’s, there isn’t a kind of one size fits all kind of advice, but  what I do here consistently is like, Paperwork comes in, examine it closely, check to see if things match. Set aside time, basically. And set aside rewards for yourself for eating all the raw broccoli that you’re going to have to eat. Like, to chew through all the paperwork, to Google all the terms, to go to websites  where you can look up what’s the going rate for things in your area, to read your health insurance policy really closely, to go to Google and Reddit and this show, wherever else, like look for every piece of advice you can. It’s a giant enterprise.

So I think that’s the— prepare for it to be a big enterprise, and get all the help you can, and rope in everybody you think can support you, in any way you can.  Whether it’s your friend, who’s a CPA, your friend who can hook you up with a good drink afterwards,  with whatever it is that you need, to make it work. Cause it’s a giant thing. 

TK: Let’s do a little wind down. So what’s next? Are you going to keep covering COVID?

Dan:  Yeah. I mean, I don’t think the pandemic’s going anywhere,  There’s going to be questions we’re gonna need to ask.

TK: I feel like there’s going to be COVID scams, you know, like people that are going to use this time in they’re seeing where the loopholes are and they’re finding a way that over time they’re, they’ll just scam the system slash the people.

Dan: We’ve seen it already. From the springtime, people found there were unscrupulous providers that found loopholes in the law that said if you are not in network with an insurance company the insurance company has to pay you whatever you want for a COVID test. And so there were people charging insurance companies, $6,000 for a COVID test,

TK: Wow. There it is. 

Dan: ProPublica was running stories about. people who are getting federal contracts for supplying personal protective equipment, who did not seem to have any business getting contracts like that.

TK: Wow. Okay. So it’s been happening already.

Dan: I mean, yeah, 

TK: Yeah. Where there’s money. There’ll be scams.

Dan: That could be like the subtitle for our show.

TK: U Dan, it has been a pleasure. Thank you for allowing me to, I don’t know, fellowship with you because this is what it really felt like church: fellowship. Preach right here. Thank you so much 

Dan: Likewise. It’s so fun to talk with you. .

TK: Yeah. All right. Uh, I think my work is done here, so I’m going to turn it over to you, Dan. , so you can get these credits popping.

Dan: Thanks. DK. Thank you so much. Take

TK: Thank you. All right.

Dan: All right, and thank you to the awesome TK Dutes. And thank you to everyone who has been supporting this show — during NewsMatch, anything you give us counts for double. Because they match you!  

They are amazing. YOU are amazing. Thanks to you, we are about three-quarters of the way to maxing out what NewsMatch will give us. We would LOVE to hit that max: That’s money they are waiting to give us, and you can help.

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The place to go is www dot arm and a leg show dot com, slash, support.  That’s arm and a leg show, dot com, slash, support. 

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Till then, take care of yourself.

An Arm and a Leg is produced by me, Dan Weissmann, and edited by Marian Wang. Daisy Rosario is our consulting managing producer.  Adam Raymonda is our audio wizard. Our music is from Dave Weiner and Blue Dot Sessions. Camila Salazar helped produce this episode. 

This season of an arm and a leg is a co production with Kaiser Health News. That’s a nonprofit news service about healthcare in america, an editorially independent program of the Kaiser Family Foundation. Kaiser Health Hews is not affiliated with Kaiser Permanente, the big healthcare outfit. They share an ancestor. This guy, Henry J Kaiser. He had his hands in a lot of different stuff.

Really different. Smelted aluminum. Owned TV stations. Built cars— and one of the first big resorts in Hawaii. When he died more than 50 years ago. He left half his money to the foundation that later created Kaiser Health News. You can learn more about him and kaiser health news at arm and a leg show dot com slash kaiser.

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