The Mighty Logo

Healthcare Costs: The Chronic Illness 'Symptom' Doctors Don't Warn You About

The most helpful emails in health
Browse our free newsletters

I was first diagnosed with ulcerative colitis at 18. It was explained to me that my new chronic illness would present both primary and secondary symptoms. Primary symptoms are the disease itself – chronic ulcers in my colon, yikes. Secondary symptoms result from primary: fatigue, malnutrition, arthritis, even depression and anxiety.

What no one mentioned mentioned to me was one more “symptom” that has proved to be more vexing than almost all of the others. What’s harder to talk about than the bleeding ulcers in my large intestine? Apparently, how much it costs to treat them. Let’s talk financial impact of a chronic illness.

I estimate that my colitis has cost me and my family at least $50,000 in the last decade. I expect to continue to pay high costs for the rest of my life. The financial impact on me and my loved ones is daunting.

For the first seven years after I was diagnosed, my healthcare costs were covered mostly by my parents. My family is well off and we’re blessed with a range of other privileges too. Primarily, I have two available, employed parents, both of whom are equipped to navigate our nation’s byzantine healthcare system and monitor and minimize costs as much as possible. I am immensely grateful for this and I know the system is less forgiving to people who don’t have a support system of advocates.


A banner promoting The Mighty's new Crohn's & UC Support group on The Mighty mobile app. The banner reads, Join the Crohn's & UC Support group to connect with people who understand life with IBD. Share resources, advice, triumphs, and struggles with others who get it. Click to join.

To save money in the healthcare world, just like anywhere else, means to put in time and experience inconvenience. Over the years, in an effort to minimize spending, I have: spent dozens of hours scouring and assessing insurance plans, relentlessly terrorized HR professionals, cried to bill collectors, sent hospitals angry letters and called insurance providers and doctors’ offices to the tune of dozens of hours on hold.

Sometimes I feel like I’ve been on the phone with Humana since 2007. While I’d rather be doing just about anything else, the diligence pays itself back. If I’m not meticulous when selecting an insurance plan, I could casually add thousands to my expenses. If I’m not communicating assertively with my doctor, I could sink into substantial debt. The financial impact of my chronic illness is very real.

Having family members to make calls, read the fine print or literally pay my medical bills has been no small miracle. Ironically, the illness I’m paying to treat sometimes makes me too sick or tired to advocate for myself and execute financial planning.

I’ve appreciated this more as I get older. For the last three years, I’ve transitioned into covering my healthcare costs completely. Most of the money I spend on healthcare goes to one medication, Remicade. Remicade is administered to me via IV infusion every eight weeks. Those infusions cost (before insurance and rebates) between $4,000 and $10,000 each time I receive one.

I choose to be on this medication because nothing else works. Less expensive treatments for ulcerative colitis exist, but none of them have been both safe and effective for me. Outside of Remicade, my costs are: medications for a range of symptoms, blood tests and diagnostic procedures, travel, time off from work due to illness or treatment, special foods and high monthly insurance premiums.

The cost of having a chronic illness is more than just financial. I live my life always considering the long-term. Moving, traveling, working – I have to consider the healthcare costs associated with any major life change. I need access to the internet, a phone, doctors and my infusion centers. I need to be able to call my doctors and healthcare company to talk payments and treatments.

For example, consider this. The pharmaceutical company that makes my medication provides a rebate program to reimburse patients who struggle with the high cost of the prescription. (I have no idea why they can’t just make the drug cheaper.)

It works like this: you submit a bunch of paperwork, get a special debit card, submit your Explanation of Benefits (EOB) documents to provide proof of treatment, then they load up your special debit card with the cost of the treatment and you use that debit card to pay the bill.

If you’re not already exhausted, I’ve got one more fun fact about this convoluted and frustrating system. Until last year or so, the rebate program would only accept EOBs via fax. When they changed over to accepting PDFs via online upload, I thought I might cry.

In order to take advantage of this money saving opportunity, I need a lot of things. Things like a mailing address where they can send the card, access to a scanner and fax machine, a place to store medical bills, and the time to organize and submit the papers.

Again, my family’s financial privilege has made a huge difference in my diagnosis. Still, I think it’s safe to say that my chronic illness has forced me to face tough financial truths much sooner than some of my peers.

I have to set my own standards. Most 20-somethings hear that their rent should be one-third of their income, for example. Realistically, mine should never be more than a quarter, because my healthcare costs are so high.

Being uninsured will never be an option for me. Neither are the catastrophic insurance plans marketed to my demographic. Staying on a regular eight-week treatment cycle requires continuous, comprehensive coverage, because paying for even one infusion out of pocket would break the bank.

Freelancing will also never be an option for me. The financial instability is too much for me. I realized halfway through a film degree that I will probably never work in that industry. I know folks with chronic illnesses who do it, but those people are braver than I. It’s just not a risk, financial or physical, that I’m comfortable taking.

Most of my healthy friends hope to purchase health insurance with a low monthly premium, regardless of the deductible. But for me? It’s a guarantee I’ll hit my out of pocket maximum.  I’ve paid upwards of $400/month to ensure that maximum is merely $5,000, not $12,000.

This results in predicaments like the one I found myself in last year. In 2016, I had coverage through a marketplace plan from January through March, so I shelled out the high monthly premium and paid toward my out of pocket max. I had two Remicade infusions during those months, and I was looking at medical bills in the thousands. A typically exciting Q1!

In April, however, I qualified for great medical benefits through a new job. My employer’s plan boasted no monthly premium and a lower out of pocket maximum for the year. Reading through the paperwork with my boss, it even looked like the co-insurance rate for my infusions could go down.

The downside was that I’d have to start paying toward the new maximum pocket maximum all over again. I was starting from zero. Plus, establishing care with a new provider required two extra appointments, one with a general practitioner and one with a specialist. That was two more copays than I’d planned on for the month of April.

I crunched the numbers and decided it was worth it to ditch the marketplace plan and get the new coverage. Over the course of the year, my total costs would be lower. My company would be shouldering the monthly premium completely. But switching over meant more up front cost, so April and May were unexpectedly rough. I gritted my teeth and pulled out my debit card. I reminded myself to be grateful for the health that allows me to hold down a job in the first place.

At the end of the day, I’m grateful for that and more. My experience with colitis has given me perspective that enriches my life and, I hope, the lives of others. I do sometimes resent the financial impact, especially after a decade of treatment.

I can only hope that the American healthcare system continues to improve and reduce costs for patients with chronic conditions. In the meantime, I’ll be saving and planning and calling, and saving and planning and calling. You can’t see, but I’m dancing to hold music right now, counting my blessings.

The cost, again, is not just monetary. It’s time and energy. It’s finding a fax machine and the emotional energy to plead a pharmaceutical company to cut you some slack.

This post originally appeared on Bravely.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via Dutko.

Originally published: June 13, 2017
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home