Life with Crohn’s Disease is a Never-Ending Fight with Insurance Companies

A personal essay on the failure of American healthcare

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In solidarity — Joe

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Photo by Towfiqu barbhuiya on Unsplash

During the spring semester of my junior year of high school, I became incredibly ill. For about three months I was in and out of doctors’ offices and hospitals, looking for an explanation as to why I couldn’t eat and had lost 30 pounds. Eventually, a colonoscopy revealed I had Crohn’s Disease, an incurable gastroenterological condition. After trying a few different medications I found one that worked for me, and I’ve remained relatively symptom-free ever since (knock on wood). While Crohn’s isn’t fun, I’m lucky. Some patients are unreceptive to treatment, leaving them bedridden and disabled. This is not my situation, which I am grateful for.

But no matter the severity of our symptoms, Crohn’s patients, like the millions of other Americans who suffer from chronic illnesses, are all unnecessarily burdened by the pointless bureaucracy and exclusivity of American health insurance companies.

The first time I realized the absurdity of American healthcare was four years after my diagnosis. I was being treated with Remicade, an intravenous medication that was administered in hospital infusion centers. In an attempt to cut costs, my insurance wanted me to switch to in-home administration. That meant I’d have to store bags of Remicade (valued over $1,000 each) in a filthy frat-house refrigerator, where they’d inevitably be destroyed by drunk partygoers fumbling around for a can of PBR. It wasn’t until I enlisted my doctor who refuted the company did they stop pushing for in-home infusions. My treatment remained the same, but the experience opened my eyes to the impracticality of the for-profit system. 

Since then, my experience with insurance companies has only gotten worse. After each drug infusion, I receive bills from various sub-contractors trying to eek a profit out of my necessary medication. The infusion center subcontracts a nurse, who uses equipment provided by another subcontractor, all of whom bill my insurance exorbitant prices. This leads to me getting bills from companies such as “Arizona Digestive Health” (I’ve never received any medical treatment in the state of Arizona), informing me my insurance rejected paying $200 for a needle, so it’s on me. When I call the customer support line to figure out who this company is and what I would be paying them for, I’m transferred through a byzantine system of faceless operators, all of whom say they’re from companies I’ve never interacted with. Better yet, I found out the infusion company counts visits to their infusion center as “in-home procedures,” charging me the higher rate.

And that’s only if they decide to give me the drug in the first place. On January 1^st of this year, my insurance decided to switch pharmaceutical providers without informing me. When they got my case, the new pharmacy vetoed my prescription. No replacements, no explanation, just a letter in the mail from a company I’ve never interacted with saying, “Yeah, your direly needed medication isn’t coming.” My doctor is appealing, but given there’s no clarity on what the process is or how it differs from the original rejection, I’m not optimistic.

The U.S. far out-spends peer nations on healthcare costs per capita. (Source)

The point of this essay isn’t to make you feel bad for me. There are many Americans who have significantly worse health situations than I do. I’m writing this because, for most Americans, dealing with rigid healthcare companies is a sporadic nuisance that only occurs when they get a yearly physical or twist an ankle. With infrequent interactions, most patients suck up the inefficiencies of our system and move on with their lives. But as one of the millions of Americans who does not have this option, I’m here to warn you — this system is fundamentally broken. It is not designed to facilitate easy access to necessary medicine, but to extract value from providers and patients alike. Insurance companies are a layer of fat, a parasitic excess that sees life-changing diseases and medical trauma as a potential for profit. 

For those of us who live in constant friction with our broken system, the arguments against switching to universal healthcare coverage fall flat. “Do you really want the government deciding what drugs you can take?” and “The wait times for universal healthcare are so long” aren’t persuasive arguments considering a private company just vetoed my prescribed medication and I’ve been waiting on a black box appeal process for over a month. Alternatively, the partial-universal healthcare programs we do have poll around 80% favorability, indicating a much smoother process. I am unaware of any other facet of our society that gets approval from 4 out of 5 Americans.

Source

Anecdotes aside, the superiority of a universal healthcare system is reflected in the fact that it is used in 35 of the 38 countries comprising the Organization for Economic Co-operation and Development (OECD). The only three without it are Poland, Greece, and The United States.

For an American who only has sporadic interaction with the healthcare system, I understand why they would be reserved about moving toward universal coverage. The system has its problems, but for many Americans engagement with it is few and far between. Add in the political scaremongering (“Death panels!”) and it’s no wonder there’s been little political appetite for universal healthcare. But the unfortunate reality of our system is that we are all one car crash or terrifying diagnosis away from being beholden to a broken, inhumane system that doesn’t see patients, only costs and profits.

Let my story serve as yet another data point in the overwhelming pile of evidence that shows the system of private healthcare has failed. It’s time for the United States to join the rest of the modern world and adopt Medicare For All. 

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This is my healthcare story. Now I want to hear yours. How has your life been affected by the American healthcare system? Share your thoughts in the comments.