A Blast of Hope and Humanity: Here’s what perseverance looks like

Dan: Hey there. This is an arm and a leg, a show about the cost of healthcare. I’m Dan Weissman and we’re gonna do something different. Today we’re going back to one of the very first stories I ever did for this show. I went back and listened to it recently and I thought there is no story.

I’d rather share right now with as many people as possible. If only I had a podcast. Oh, wait. Yeah, because if you’ve been listening recently, you know, we’ve been talking a lot about financial self-defense, the nuts and bolts of fighting back against unreasonable medical bills, and you’ve probably noticed a theme that keeps coming up again and again.

It takes a ton of endurance, perseverance, it takes a lot. And if you’ve been living in this world this year. You know, living through times like this, that takes a lot of endurance too. The stakes feel really high. Big chunks of the country are on fire in more ways than one. So I’ve got a story about someone who endured and endured and endured a lot of suffering, a lot of uncertainty, sometimes life and death, and who took it all on?

Who kept going. She’s also someone who took on incredible sacrifice to save her family from going under because of medical bills. And here’s the thing. By making those particular sacrifices and taking on the challenges, the work that came with them, she helped change the course of history in a way that seems particularly relevant right now when we are in the middle of a high stakes presidential election, so.

We’re gonna play you the story of Laura Derek, one of the people I admire most. If you’ve heard it before, may find it hits a little different now It did for me. And afterwards we’ve got something new. I caught up with Laura last week. It was a great conversation. So here we go.

Laura Derrick: Let’s see. Let’s head over and there’s a, a spot we could probably sit here. That great. Okay, cool. Hopefully pretty quiet.

Dan: So this is the part of the NPR interview where you introduce yourself, uh, you know, the genre. It’s like, my name is, and I, and then you finish that sentence however you want.

Laura Derrick: Okay. My name is Laura Derrick and I do a lot of different things.

I don’t, I’m not sure exactly how to answer that. 

Dan: I first meet Laura Derrick in a park in Austin, Texas. It’s a place where she used to take her kids when they were little.

Laura Derrick: My name is Laura Derrick and I live in Austin, Texas.

Dan: There we go. That was beautiful. All right, cool. And so we are talking because I said to the universe via Facebook, like, I’m interested in people with stories about healthcare and money.

Right. And I think your daughter basically said like, my mom has a whale of a story.

Laura Derrick: Yes, this is true. Um, I was born with a hereditary illness, uh, which I didn’t know at the time.

Dan: And Laura Derrick proceeds to blow my mind for the next two and a half hours. We’re condensing it to 20 minutes. Here she is, someone who really confronted the cost of healthcare over and over, and she prevailed in this story.

Laura endures a lot. She makes crazy sacrifices, and along the way she changes the course of history. So strap in.

This is an arm and a leg, a podcast about the cost of healthcare. I’m Dan Weissman. We’re gonna pick up Laura Derek’s story in the 1990s. Laura’s in her early thirties living in Austin with her husband and their kids. And up until this moment, for like 20 years, since she was a kid, her life had been like a real life, really unpleasant medical mystery.

She’d get these attacks all the time. Random parts of her body would swell up like crazy and hurt her belly, her hands, her throat docs had to shove a tube down her throat for that so she didn’t suffocate and. Nobody knew what was wrong or how to treat it.

Laura Derrick: Uh, so I had, you know, for example, an emergency appendectomy in my appendix was fine.

Dan: 20 years of this. 

Laura Derrick: They tried antihistamines, they tried steroids, they tried pain medication. Um, and a lot of them eventually for. Threw up their hands and said, yeah, we had no idea. Must be, you know, in your head, uh oh, that’s a classic. Um,

Dan: and, oh, you’re a woman and I don’t understand your problem,

Laura Derrick: eh, maybe you don’t have one.

Exactly.

Dan: Then one day in her early thirties, she meets this immunologist

Laura Derrick: and I told him my history and he looked at me and he said, I think I know what this is. And I laughed, uh, because I’d heard that many times before. Uh, and he said, no, no, I, I get it. I understand. And he ran off for 10 minutes and came back and then copied pages from an immunology textbook to show me.

And it had photographs of what hands looked like swollen. Exactly like minded did. It was like reading my life history.

Dan: It’s a condition called hereditary angioedema. It is super well understood. I mean, it’s in immunology textbooks, but it’s also super rare. Most doctors, once they pass their immunology exam in med school.

Never hear about it again. But this doctor,

Laura Derrick: he explained that he had just gone to this conference and seen a case presented.

Dan: So he was like, aha. And if this had been a medical mystery story, that would’ve been the happy ending. Diagnosis, treatment relief. This is not the happy ending. This is just the beginning of our story because there’s no treatment.

Well, not for her, not in the us. She hears as a treatment in Europe. Remember, this is the 1990s, the internet not so much a thing. You wanna know more about something like this. You gotta go somewhere and find out. So Laura’s husband works in film. He does sound, he manages to line up a gig in France so Laura can tag along, learn more.

She meets a doc there, a researcher. He says, yeah, we got a treatment. Works pretty good, but getting it approved in the US do not hold your breath.

Laura Derrick: It was awful. I mean, it was, on the one hand, it was so exciting to know what this was finally, and to know that there were possibly treatments available eventually, you know, like that there was, there was progress.

Dan: Just not for her. Not yet. So back in the US the best treatment Laura Dare can get. Basically sucks. It’s like a steroid. It punches the liver to produce something that kind of helps long term, not so great for the liver. Meanwhile, like a steroid, there’s side effects, hormonal stuff.

Laura Derrick: Okay? So I didn’t have any periods just in the TMI end of things.

Uh, breast tissue started to kind of disappear.

Dan: Her voice gets deeper and she just feels weird all the time, like moody, not herself. It’s no fun. This is her life for a long time. Meanwhile, she runs a household where dad travels for work a lot. She homeschools their kids. She does some volunteering and some freelance work in the movie industry.

But just staying alive is kind of a big job for her. Attacks hit once or twice a month. When they’re not too bad, she can still talk and think, but she’s immobilized and she’s got two little kids at home.

Laura Derrick: So we would play, play games like shoe store where I would lie in bed and they would go get all of the shoes from the closet and you know, try to sell them to me.

Try to put them on like things to entertain your kids while you’re so sick you can’t move. Um, and there were times when they were little that, you know, I had to call an ambulance and, you know. The paramedics were being entertained by my son.

Dan: Her kids get older, years go by and this other thing happens.

It’s the summer of 2004. Laura’s watching the Democratic National Convention. Not that she’s big into politics.

Laura Derrick: I, I was one of those people who kind of found politics sort of icky,

Dan: but she’s watching during the keynote address and the speaker, he’s this state senator from Illinois. He really grabs her.

Obama Archival:: There is not a black America and a white America and Latino America. I

Laura Derrick: paused the tv, yelled at my kids to come into the room and stood there and said. You have to listen to this. This man’s gonna be our next president. And of course, everybody laugh.

Obama Archival::And Asian America, there’s the United States of America.

Dan: Lots of people hear that speech. Lots of people get pretty excited about Barack Obama, but not like Laura Derek. What happens here, it’s how she responds. Over the next couple of years. Laura keeps track of Barack Obama and in 2007 when he announces his candidacy, she is thrilled

Laura Derrick: and I, I mean, I over the moon thrilled

Dan: Because now. After hearing that speech, she has no chill. She has been waiting for this moment, for years.

Laura Derrick: I couldn’t have even imagined before that walking into a campaign office and you know, like volunteering. But that was it. And I literally walked in and said, I’m here. I can be here most of the day, every day. What do you want me to do?

Tell me where to start.

Dan: Basically they put her in charge of a bunch of stuff for Texas. As a volunteer,

Laura Derrick: it was not a battleground state, right? It was not a state where they sent a lot of resources, so there were really not a lot of campaign jobs that were paid.

Dan: The election happens, Barack Obama wins, and then Laura Derek’s health totally inexplicably collapses.

She has flareups all the time, pain, swelling. She’s in and out of the hospital. Eventually her doctor figures it out, the drug she takes. Is giving out. And what that really means is after all the years of this drug poking her liver liver’s

Laura Derrick: done and he, he said, eventually you know, you’re, we’ll have to stop this medication or you’ll end up on a transplant list.

Dan: And by that point, medically she is like so completely habit unless she thinks she’s about to die, which she does think sometimes she doesn’t even call an ambulance. And by this time, that drug she saw in Europe, it’s here now. It has been approved by the FDA,

Laura Derrick: but I didn’t have it yet because there’s an entire other drama.

Dan: It’s not enough for the government to approve the drug. Her insurance company also has to approve it. That takes a while, and then they have to work out a deal with what’s called a specialty pharmacy. You don’t get this kind of drug from CVS. All told it takes more than two years. She finally gets her prescription filled drug works like a charm after decades of waiting first for a diagnosis, then for access to treatment.

Looks like Laura Derrick is finally home free.

That feeling lasts for like a few weeks. The biggest battle that is still ahead.

This season of an Arm and a leg is a co-production with Kaiser Health News. That’s a nonprofit news service covering healthcare in America. Kaiser Health News is not affiliated with the big healthcare outfit, Kaiser Permanente. We’ll have a little more information about Kaiser Health News at the end of this episode.

A month after Laura gets this drug, three things happen. First she sees the insurance statement for the drug and sees the price.

Laura Derrick: I was covered by insurance, so this is not what I paid, but the first bill was over $55,000

Dan: and this is for like a month’s supply.

Laura Derrick: A month’s supply.

Dan: And how much was your share of that?

Laura Derrick: Uh, my share was about $20.

Dan: So that’s one. And then thing two, her son is diagnosed with type one diabetes on the cusp of his graduation from the University of Texas. And then thing three. Her husband is diagnosed with prostate cancer.

Laura Derrick: Uh, and it was not, it, it, it, it, we didn’t catch it right away.

Dan: He’s gonna be out of commission for the better part of a year. And because of how insurance works for people in the movie industry where people move from project to project, he’s gonna lose his health insurance. And three members of the family now have super expensive pre-existing conditions for which they can’t buy insurance on their own.

I mean. Obamacare has passed by this point, and yes, it includes a ban on insurance companies denying coverage of preexisting conditions, but Obamacare gets implemented in phases and that ban won’t take effect for another two years. And so Laura’s like, okay, I, I am now healthy. I can actually hold down a job.

Laura Derrick: I applied for five jobs that looked fabulous and I really wanted them, and I got offers for all of them, and none of them offered insurance. So I couldn’t take them.

Dan: So she goes to the one place where she knows she can get a job and the job will come with health insurance, which is Obama world. It’s 2011, the 2012 reelection campaign is ramping up.

She has a network of people in that world who love her and know her, and know her commitment and her ability. And she goes to them and they’re like, yes, we will find you a job, but there’s a catch.

Laura Derrick: My, my daughter’s last year of high school, my son’s last year of college, I left our family with my husband in cancer treatment because the only job they could offer was in Ohio, and it offered us an insurance policy with a zero deductible that cost $20 a month for the whole family and covered everything we needed, but it meant I had to be gone for almost a year and a half.

Dan: She goes so they can have health insurance and so that Barack Obama can have a second term. It’s an ordeal for the whole family. Laura’s husband’s treatment is brutal. He needs looking after their daughter, takes care of him and the dogs and herself. Her son adjusts to life with diabetes. All without her.

Laura Derrick: I was in a very intense situation and consumed by that and hardly had time to even talk to them. And I worked every day, like seven 30, 8:00 AM until midnight or one, and slept a few hours and got up and did it again, did my laundry Sunday mornings and boom, right back at it.

Dan: Everything is stripped down to the basics.

Laura Derrick: Um, I stayed with a family there who offered me, um, a place to live for free. Um. They, they saved us. There’s no way I could have on the salary, you know, a campaign salary. I couldn’t have afforded to pay the bills back home and still, you know, afford a place to live there.

Dan: As it is, Laura and her husband borrow against their house.

They burn through their retirement savings, and she has zero daily support system. She is running the Obama campaign in more than 20 counties in south central Ohio. Everybody she sees. All day. Every long day works for her or volunteers for people who work for her. Her job is to motivate them, organize them, help them tell their stories, not cry on anybody’s shoulder, and she just guts it out and does it.

This is a woman you know who’s played shoe store with her kids when she was immobilized. She knows from lying on the bathroom floor, unsure if she’s gonna live or die. She has a lot of grit. She does it for the second half of 2011. She does it for the first 10 months of 2012. And the whole time everybody knows, you know, Ohio, which was a swing state in 2008, is a must for the 2012 Obama campaign.

Laura Derrick: I think there was one path to victory without Ohio. Uh, so it was crucial. 

Dan: And this was all the marbles for you and your family.

Laura Derrick: Every bit of it. Like this was it. And, uh. But I got it worked. So, um,

Dan: oh, I have it. She takes out her phone and starts looking for a photo from Facebook. How do I find ‘

Laura Derrick: em? I

Dan: dunno.

It takes a minute. Come on.

Laura Derrick: Where are the photos?

Dan: Well, there you go. This is Ohio. Okay. It’s ev all, you see all these arrows pointing to the right red. So this was a

Laura Derrick: change from 2008 to 2012.

Dan: This is a map of Ohio. Each county is represented by an arrow. If Republicans gained ground in 2012, it’s a red arrow pointing right.

Blue arrows point left, and mostly Ohio is just a sea of red arrows, but in the middle and southern central portion of the state, it’s all blue. 

Laura Derrick:Oh, this was my region of Ohio.

Dan: Oh, Jesus Christ. You held you, you, you like Ohio was like working to the right South

Laura Derrick: German. I was like, we are, God gonna win this thing.

Dan: I’m sitting here talking to the person who. Who kept MIT Romney from being president?

Laura Derrick: Well, certainly not single handedly, but you know, it was, I, I was so determined, like I was not gonna go through all of this for nothing.

Dan: So that was it. She made it. Obama was elected and her husband was getting better and could go back to work and become the person bringing in health insurance again.

And they made it.

What I love about Laura’s story is there’s like no separating the personal experience, even intimate the body, the pain, the family budget, taking a job that keeps the family separated, all of that from some of the biggest forces in our big, messy country. The pace of science, the drug industry, the insurance industry.

The Affordable Care Act, presidential frigging election in Laura’s story, they are all there at the total extremes. They can’t be separated. All of us pretty much end up having to deal with these giant systems. None of us more than Laura, Derek and Laura, Derek. She dealt with them right back so that she could have a life and inspired by a skinny state senator from Illinois in 2004 so that other people could have a shot at one too.

So that’s the end for now, except for one big haunting thing, how much the drugs cost. I,

Laura Derrick: There’s a real guilt factor of using a medication that is this expensive. I mean, I’m thrilled. I’m very happy and I, I love being healthy, but man, I, I, I am one of the. Reasons why healthcare in this country cost so much,

Dan: but where does all that money go?

We’re talking more than half a million bucks a year. Of course, there are the usual shorthand answers. The stuff is derived from human blood that’s expensive, and there’s marketing costs, like finding patients with this super rare condition.

Laura Derrick: So they, they just spend a fortune on patient outreach programs.

Yeah, US healthcare.

Dan: Yeah. I mean the US part of it is the crazy part, right? Yeah. ’cause you talked to this doctor 25 years ago who was developing this treatment and

Laura Derrick: back then this drug in Europe, uh, a dose of it was about $200. So it was expensive there, but not

Dan: this drug was available in Europe.

Laura Derrick: In Europe

Dan: for 200 bucks.

Laura Derrick: Mm-hmm. A dose.

Dan: Yeah. Yeah. I don’t think you need to be the one feeling guilty about that.

At $200 a dose, that drug called SRIs in the US would be about $10,000 a year, at half a million dollars a year. SRIs is on a short list of the world’s most expensive drugs. How exactly it got that wild price tag. Well, that became the story for the episode we put out right after we first shared Laura Derek’s story and a couple other things about that story.

It is also a story about a woman who undertook a giant years long campaign and made her own mark on history, and we did it in collaboration with the great podcast. 99% Invisible. You may wanna check it out. Meanwhile, I hope you’ve gotten a dose of bedrock humanity from Laura Derrick’s story. As I mentioned at the start of this episode, I got to catch up with Laura last week around the time we first aired this story.

In late 2018, Laura took a new job with the Texas Civil Rights Project

Laura Derrick: and we do, uh, voting rights and election protection. And, uh, we also do criminal injustice reform and racial and economic justice work. And a lot of our racial and economic justice work is focused on the border, on immigration and family separation and all of those really urgent issues.

So I’m thrilled to be working in a job where I can really make a difference.

Dan: and they are all issues that are intimately bound up in the election that we’re having. This year.

Laura Derrick: Absolutely.

Dan: Yeah. Well, congratulations. Yeah. How are you?

Laura Derrick: I’m doing well. Um, it’s, it’s been a, a little, it’s actually been a lot scary the past few months be because, you know, having a primary immune disorder, it’s a little intimidating to be in the midst of a pandemic.

You know, my doctor doesn’t even want me to go to his office to see him because he doesn’t want me to go anywhere. At all. So we’ve been really careful. I’ve stayed home. It’s stressful still, but, uh, all in all doing okay.

Dan: I wanted to talk with you, you know, and wanted to replay this story. It feels so, uh.

Important right now to me. You know, on the show we’ve been talking a lot about like just the nuts and bolts. Like you get some crazy bill. Oh, whatcha you supposed to do? And I’ve been talking to people who have a lot of experience in doing this successfully and they’re all like, it’s hard and it takes a lot of time and you don’t win ’em all.

But it’s a lot. This just takes a lot of persistence. That persistence through really difficult, uncertain times is such a theme in your life. I really thought of you and that and that. We’re also in this season, right now, we’re entering election season. That feels to so many people. The stakes are super heightened and that people are unsure about what, what difference can I make?

What can I do? What is, you know, what’s it possible to do? And that it’s another piece of your story that you entered, that crucible with everything you had on the line personally, and that you were just so determined to see it through. So it made me want to talk with you.

Laura Derrick: Thanks. You know, I, I think I’m just really stubborn, you know, I just didn’t wanna give up. And I, I realized that if I wanted things to happen, I had to help be a part of making that happen. And what’s inspiring about right now is that there are also many people in that place where they do see that they have an opportunity to be a part of making change. And I hope there are just enough of us.

Dan: Hmm. We talked a couple of years ago about your. Journey. That’s a while. It’s been a long couple of years, and I wonder if your perspective has shifted since then.

Laura Derrick: I think I’ve gone through so many variations of like grief and anger, and. There’s just so much in, in this world today that didn’t have to be this way, in my opinion.

So I have, there’s just this huge, like, sadness. I mean, how can you not be sad when so many people have died? And a lot of that, you know, is probably preventable when people are in such dire need for healthcare, for food, for housing, for jobs. Um, I mean, it, it’s, it’s really wrenching to see it. It’s both. Sad and scary working in the job that I do.

All of those things are kinda like piling on because I, I, I see them and I feel them all the time, but I still have hope. Like they’re amazing people working on these things. They’re amazing, amazing young activists who, uh, I, I know this work is gonna go on even when I’m not able to do it anymore. They’re pretty determined.

I know. Probably as determined as I was. 

Dan: So, looking back across decades when you had to fight with your own body to survive and all the places you carried your fight to. Yeah. Do you, do you look back at that as you kind of go forward day to day to think like, I’ve faced a few things. Um, I, I, I’ve, I’ve done a few things.

Laura Derrick: I, I do, I, I feel like despite decades of fighting with my own body as you put it, I’ve.I’ve gotten to do amazing things with my life. You know, I’ve, I have lived, I have survived it. It, it ain’t gonna do me in now. So, but it, it does give me strength looking back on it, you know, sometimes I look back and I think, was I nuts? But you do, you do the things that you have to do to survive. Or at least those of us who are still here.

Dan: Yeah. Thank you so much. Thank you for talking with me today.

Laura Derrick: Thank you, and thanks for a wonderful podcast. I have so enjoyed it.

Dan: Thanks so much for listening to this episode of An Arm and a Leg. Come back next time for more practical lessons on the art of financial self-defense against a healthcare system that can seem. Like a lot of things in this country right now, overwhelmingly out of control. That’s in two weeks till then take care of yourself.

This episode of an Arm and a Leg was produced by me, Dan Weissman. Our editor is Marian Wang. Laura Derek’s story was originally edited by Whitney Henry Lester. Daisy Rosario is our consulting managing producer. Adam Raimundo is our audio wizard, and Adam contributed original music to this episode.

Original music comes from Dave Weiner and Blue dot sessions this season of an arm and a leg. It’s a co-production with Kaiser Health News. That’s a nonprofit news service about healthcare in America. That’s an editorially independent program of the Kaiser Family Foundation. Kaiser Health News 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. Concrete, aluminum shipbuilding like a chunk of the US cargo fleet for World War ii. Seriously. 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 at Kaiser Health News at Arm and Leg show.com/kaiser. Diane Weber is senior editor for broadcast, and Tanya English is Senior Editor for Broadcast Innovation at Kaiser Health News. They’re editorial liaisons to this show. Finally, thank you to some of our new backers on Patreon and some.

Who increased their pledge pledge? Two bucks a month or more. You get a shout out right here. Thanks. This time too, Gerard Kovich, Eric Elner, Steve Veso, Izzy Veso, and Mary Dean, Brie Sisson, Clifton Macintosh, Alison Gower, mark Comrad, and E. Thank you.