All the Marbles: One woman’s epic quest for health insurance

Dan: This story is about someone who really confronted the cost of health care. And prevailed.

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

Laura Derrick: Let’s head over to this a spot… We could probably sit here …. Hopefully Pretty quiet. 

Dan: This is the part of the NPR interview where you introduce yourself. My name is, and.. Finish that sentence however you want, as many takes as you want. 

Laura Derrick: OK. Here we go. My name is Laura Derrick, and I do a lot of things. I’m not sure how to answer that question.

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

Dan: There we go. That beautiful. And so we are talking because I, um, I said to the universe via facebook, like I’m interested in people with stories about healthcare and money and I think your daughter basically said like, my mom has a whale of a story. 

Laura Derrick:This is true. I was born with a hereditary illness. 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. 

In this story, she endures a LOT, 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 health care. I’m Dan Weissmann.

We’re going to pick up Laura Derrick’s story in the early 1990s: Laura’s in her early 30s, living in Austin with her husband and their kids. 

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 would 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: And so I had, you know, for example, an emergency appendectomy, and my appendix was fine. 

Dan: Twenty years of this.

Laura Derrick: They tried antihistamines, they tried steroids, they tried pain medication, Um, and a lot of them eventually throw up their hands and said, yeah, we have no idea. It must be, you know, in your head. 

Dan: Oho! That’s a classic.

Laura Derrick: Yeah.

Dan: Like, ‘You’re a woman, and we can’t figure out what’s your problem is. Ehh, maybe you don’t have one…’

Laura Derrick: Exactly.

Dan: Then one day, in her early 30s, she meets this immunologist. 

 

Laura Derrick: I told him my history and he looked at me and said, I think I know what this is, and I laughed—because I had heard that many times before. 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 swollen, exactly like-mine did. That was like reading my life history.

Dan: It a condition called hereditary angio-edema. It’s 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 have been the happy ending: Diagnosis. Treatment. Relief.

But 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 U.S.

She hears there’s a treatment in Europe— remember, this is the early 1990s. The Internet? Not really a thing. You want to know more about something like this, you gotta GO someplace to find out.

Laura’s husband works in film— he does sound. He manages to line up a gig in France, so Laura can tag along and learn more. 

She meets a doc there, a researcher. He says, Yeah, we’ve got a treatment, it works pretty good. But getting it approved in the United States? Do. Not. Hold. Your breath. 

Laura Derrick: It was, 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. To know, that there was, there was progress.

Dan: Just not for her. Not yet.

So: Back in the U.S., the best treatment Laura Derrick 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: OK. So I didn’t have any periods. On the TMI, end of things, breast tissue started to kind of disappear 

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 home-schools 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:And so we would play games like shoe store where I would lie in bed and they would go get all of the shoes from the closet and try to sell them to me— and try to put them on me, like—things to entertain your kids while you’re so sick you can’t move. 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. Then— ten, eleven years go by- 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 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 the United States of America. There isnot a black America, a white America, a Latino America…

Laura Derrick: I 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 is going to be our next president. 

Obama archival: OR AN ASIAN AMERICA. THERE IS A UNITED STATES OF AMERICA.

Dan: Lots of people hear that speech. Lots of people get pretty excited about Barack Obama. 

But not like Laura Derrick. 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: I mean over the moon. Thrilled.

Dan: Because now, after hearing that speech? She has no chill. She’s been waiting for this moment for years.

Laura Derrick: I couldn’t have even imagined, before that, walking into a campaign office and 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 It’s not a battleground state. It’s 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 Derrick’s health totally, inexplicably collapses. 

She has flare-ups all the time— pain, swelling. She’s in and out of the hospital.

Eventually her doctor figures it out: the drug that she takes is giving out. What that really means is: After all the years of this drug poking her liver, the liver is done.

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

Dan: By that point, medically, she has like so completely had it. 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. 

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— it looks like Laura Derrick is finally home free. 

That feeling lasts for like, a few weeks. The biggest battle? That’s still ahead.

Right after this break.

OK, a month after Laura finally gets the drug she needs, three things happen.

First, she sees the insurance statement for the drug and sees the price. 

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

Dan: For like a month supply?

Laura Derrick:a month supply. 

Dan: And how much was your share? 

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

Dan: He’s going to 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 pre-existing conditions. 

But Obamacare gets implemented in phases, and that ban won’t take effect for another two years.

And so Laura’s like, OK, I am now healthy. I can actually hold down a job.

Laura Derrick: And 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 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 re-election 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 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 could 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 hardly had time to even talk to them. I worked every day like 7:30, 8 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’s stripped down to the basics.

Laura Derrick: I stayed with a family there who offered me a place to live for free. They saved us. On a campaign salary, I couldn’t have afforded to pay the bills back home and still 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 he’s going to 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. 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 by God, it worked! So, um, oh— I should show you — just…

Dan: She takes out her phone and starts looking for a photo from Facebook. It takes a minute… 

Laura Derrick: Come on.Where are the photos? OK…

Dan: This is a map of something. 

Laura Derrick: This is Ohio. 

Dan: I see all these arrows pointing to the right, they’re all red.

Laura Derrick: So, this is the 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 the southern central portion of the state…

It’s all blue.

Laura Derrick: This was my region of Ohio. 

Dan: Oh Jesus Christ. You held. You, like, held Ohio.

Laura Derrick: That is how determined I was— I was like, we are by God going to win this thing. 

Dan: Holy crap. Holy crap. I’m sitting here talking to the person who— who kept Mitt Romney from being president. 

Laura Derrick: Well, certainly not single-handedly, but I was so determined. Like, I was not going to 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 is like no separating the personal experience, even intimate — the body, 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. A presidential friggin election. 

In Laura’s story, they’re all there, at the total extremes, and 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 Derrick. 

And Laura Derrick? 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. 

Laura Derrick: There’s a real guilt factor to using medication that is this expensive.I mean I’m thrilled. I’m very happy and I love being healthy. But man, you know, I — I am one of the reasons health care in this country costs 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 are marketing costs— finding patients with this super-rare condition. 

Laura Derrick: They spend a fortune on patient outreach programs and uh, you know, all of that kind of stuff. Yeah. U.S. healthcare. 

Dan: Yeah. But it’s also like, yeah, I mean the U.S. part of it is the crazy part, right? Because you talk to this doctor 25 years ago who’s developing this treatment 

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

Dan: This drug was available in Europe for 200 bucks?

Laura Derrick: A dose. Yeah.

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

200 bucks a dose is not cheap. But these days the price in the U.S. for that drug is almost 51 hundred dollars a dose. Works out to more than half a million bucks a year. It’s still on short lists of the world’s most expensive drugs. 

How EXACTLY it got that crazy price tag— that’s our story for next time on “An Arm and a Leg.” 

It involves a Connecticut housewife, a 1970s TV star, and a Las-Vegas maker and distributor of popcorn and nacho cheese sauce. Also, Wall Street. 

Yeah, you’re going to want to hear this one.

This is “An Arm and A Leg”— a show about the cost of health care.

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THANK YOU for giving that some thought. I really appreciate it.

Either way, I’ll catch you next time. 

Till then… take care of yourself. 

This episode was produced by me, Dan Weissmann. Our editor is Whitney Henry-Lester. Daisy Rosario is our consulting producer. Our music by Dave Winer. Adam Raymonda mixed this episode.

Thanks so much to the generous donors who have made our launch possible. 

Thanks to Public Narrative for acting as fiscal sponsor for our launch, allowing those donations to be tax-deductible. 

Public Narrative is a non-profit that uses training and storytelling to elevate public discourse and promote democracy. It trains both non-profits and journalists, and it supports journalism on subjects (like the cost of health care) that are not fully-covered by existing outlets. They’re online at public narrative dot org.

To borrow a phrase from former Vice President Joe Biden, it’s a big fxxing deal.