Guest post: My million-dollar body
A journalist on life as heart transplant recipient.
I’m thrilled to publish another early-career journalist today, writing about her own experience with the healthcare system.
Holly Cortland was never afforded the opportunity to live her life in ignorance of the brutality of American healthcare: She was born with a congenital heart defect, requiring her to receive a transplant as a teenager. She’ll be on extremely important medication for the rest of her life. She’s had to spend weeks at a time in hospital, and she’ll never be able to switch insurance, take a job, or move cities without being absolutely sure that she can get the ongoing transplant care she needs. She entered grad school mostly because she could get cheap insurance that way. The need to have some way to pay for the absurd cost of American healthcare has shaped her entire life, and likely will forever.
A note: Holly Cortland isn’t her real name. She wants to cover healthcare one day, and she’s worried being so critical of the healthcare system might hurt her chances of getting jobs. And she’s right! It might. Truly a terrible industry we have here. But Sick Note is the cool kid of healthcare writing; we draw on our sneakers with Sharpies, smoke behind the bike sheds, and publish anonymous accounts of our sadistic healthcare system.
Thanks so much to Holly for agreeing to write this. If you’d like to support my ability to publish more writing from underpaid journalists like her, subscribe today.
My million-dollar body
By Holly Cortland
Over the summer, while working a temporary position a few hundred miles from home, I began getting relentless emails and calls. The emails were clearly spam, advertising everything from car insurance to “👅𝐢𝐚𝐦🔥 𝐒𝐨 𝐇𝐨𝐫𝐧𝐲 🔥💋𝐋𝐞𝐭'𝐬 𝐅𝐮𝐜𝐤💋_𝒘𝒂𝒏𝒏𝒂_𝒘𝒂𝒕𝒄𝒉_𝒎𝒆_𝒑𝒍𝒂𝒚_𝒘𝒊𝒕𝒉_𝒎𝒚𝒔𝒆𝒍𝒇💘🔞 🔥💋.”
The calls were overeager salespeople from private health insurance companies.
In an effort to help me obtain coverage from 500 miles away, my mother, my COVID-19 roommate, had unintentionally given my information to someone who sold it. I am still getting the messages months later.
I was not-so-subtly reminded of my need for insurance shortly after arriving home, newly unemployed. My doctors had recently adjusted the dose of one of my medications, tacrolimus, from one milligram to one and a half. I’d picked some up without issue over the summer; as the pills are capsules, I needed to get a whole new bottle instead of cutting tablets I may have already had.
Tacrolimus is the generic version of a drug called Prograf; in pill form, it is used to prevent rejection in organ transplant recipients.
I have taken varying doses of the drug every 12 hours since receiving a heart transplant fourteen years ago. I was born with a congenital form of cardiomyopathy, a structural abnormality. It was managed with medication until I was a young teenager, at which point I entered congestive heart failure and needed the surgery.
Nearly all transplant recipients are on it at some point; many are on it forever. I currently take two milligrams in the morning and one and a half at night. If I miss even a single dose of it or my other anti-rejection drugs, my body could reject my heart. In fact, the cardiologists who handle my care have said missing doses is pretty much the only reason I would experience rejection this far out from surgery.
Because I knew he’d probably have to special order a new shipment of the drugs, I went in and had a chat with the pharmacist earlier that week. I crossed my t’s and dotted my i’s; I made sure everything was in order. But when I went back later, he discovered the prescription for this dosage had been inexplicably removed from my profile in the online system. It was some random technical problem, he said.
Holding my pill bottle with a single capsule inside, I said I’d pay for a few over-the-counter until we could get the issue sorted out.
“But they’re expensive,” he said.
And he was right. I was unemployed, and I couldn’t afford to buy the drugs when not covered by insurance. So I left. That night I took my final pill and hoped someone at my cardiologist’s office would get the voicemail I left before the pharmacy closed the next day.
Without insurance, a one-month supply of tacrolimus at my current dose costs $472, according to the website GoodRX. Even with a coupon, it would likely cost more than $100. And I am on a small dose. Factor in the other drugs I take daily, and with coupons, I’m looking at more than $500 worth of medication each month.
Transplant care has come a long way in recent decades, and life expectancies for both the organ and recipient have increased tremendously. But, being a recipient—even a stable one—is like walking a laborious and expensive tightrope.
Drug prices are the easiest way to show this, but in reality, it only scratches the surface.
In 2021 I underwent 16 blood tests: a record low (!). Almost all involved a trough level, which measures the concentration of a substance—in this case, tacrolimus—in my blood. If the level is too low, I could reject the organ; if it is too high, I could develop toxicity (which, in turn, could cause a range of problems from hand tremors to aggressive lymphoma. I had a brush with the latter once, but that’s a story for another time). If the results return out of the therapeutic range, I get sent for another test before any adjustments to my dose are made. But each test costs $250 at LabCorp. If a doctor decides to add CMP or CBC tests, the dollar amount keeps rising.
The cost of staying alive—of me, specifically, staying alive—is something I had the privilege to not give much thought until recently. The Affordable Care Act was passed in 2010 when I was 15. Its statute allowing children and young adults to remain on their parent’s insurance until age 26 was instrumental in my life, in my reaching 26 at all.
There was a time in my life spent when spending weeks inpatient was the norm. I had more than one emergency surgery, underwent routine invasive procedures, and took high doses of meds as a teenager. I was lucky enough to be covered by a parent’s insurance at the time, so I could focus on more pressing matters like taking high-dose steroids in middle school and negotiating paper deadlines from a hospital bed. I have tried in the past to calculate precisely how much money it would have cost to keep me alive, but I struggle to land on one concrete figure.
The Newark Beth Israel Medical Center reports a heart transplant surgery can “potentially cost well over 1 million dollars.” By that logic, my body is worth millions, and it still doesn’t work right. And I have to pay hundreds of dollars—a steal—to keep it functioning each month.
I turned 26 nearly two years ago, and have navigated the impossibly complicated world of health insurance on my own since then. It is no understatement to say it has influenced every life decision I have made since.
My decision to pursue graduate school six months prior to my 26th birthday was a strategic choice I made largely because I knew it would give me a way to obtain insurance. I enrolled in a school where I received in-state tuition and could purchase a year’s worth of health insurance for a little over $1000—a bargain compared to the $5000+ price tag of COBRA.
My health coverage expired last summer, and I had to enroll through the marketplace. Just finding someone to explain different plans to me took almost a month.
Over the course of writing this, my circumstances have changed. About a month ago, I got a full-time job in my notoriously competitive (and notoriously low-paying) industry. My mindset was that I would happily settle for a paltry salary if I didn’t have to worry about insurance.
But, before I could even register for benefits, the corporate offices informed all staff we would only be able to register for Kaiser Permanente, an HMO, for 2022. If I were to enroll in Kaiser, I would pay a healthy chunk of my paycheck and lose all my current doctors. My other option, and the one I ended up taking, is turning once again to the marketplace. I bring home less than $1,000 per paycheck and pay close to $200 per month for insurance.
I have made about as much peace as I can with the fact my life will be more complicated because of my health. I have needed and will continue to need specialized care. When I checked the “disabled” box on job applications, I did not get interviews. I have to chase my doctors for prescriptions or when I have questions. Like I said earlier, I get a lot of bloodwork. Some days I wake up feeling like shit for no discernible reason.
I won’t pretend to know the ins and outs of the U.S. healthcare system. But there has to be a better way than this. In 2022, I anticipate spending nearly 10% of my salary on health insurance. This is before copays or meds that aren’t covered. And, as hard as I try to stay on top of everything, I will still get bills like the one I got earlier this week: $2,000 for a cardiac stress test—for running on the treadmill for 12 minutes— because my deductible has not been met.
As I write this, COVID cases are spiking again. Like so many other chronically ill people, I have spent nearly two years doing everything I can to avoid catching the virus. With Omicron, I’ve had to adjust my thinking, and now I am doing all I can to delay the inevitable rather than avoid it completely.
I worry about the damage COVID could have on my body, but at this point, I worry more about missing work. Because if I don’t have a job I can’t afford insurance, and if I can’t afford insurance, I won’t survive.
Thanks again to Holly for sharing her story.