The Financial Strain of Life with Crohn’s or Ulcerative Colitis

People with inflammatory bowel disease spend three times as much on direct care and have twice the out-of-pocket costs as people without IBD. Advocacy and patient assistance programs are working to provide some relief.

A few years ago, as I was having dinner with a friend, we found ourselves talking about the job market. At the time, I was unhappy in a position in Corporate America, yet I struggled to leave it — its healthcare benefits were too good to give up. I dreamed of being a full-time writer, but I simply could not afford for it to be my reality.

As our conversation flowed, my friend mentioned that she didn’t realize what a burden having Crohn’s is. “It’s not that bad,” I argued. And it wasn’t. I’d been in remission for years, and for all intents and purposes, I was healthy. “But it’s keeping you at this job that makes you miserable,” she countered. “You can’t even entertain having a job that doesn’t offer you healthcare.”

She was right. I did stay at the job because of Crohn’s. I traded my mental health for my physical health. I may have been absolutely, unbelievably, horribly miserable in my position, but hey, at least I could pay for my Inflectra infusions. Golden handcuffs.

That was 3 years ago, and not much has changed. I still have Crohn’s. I still want to be a full-time writer. I still cannot afford that as a viable career option.

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The costs of IBD

Two things can be true at once: I’m grateful to have health insurance to pay for the costs of managing my Crohn’s, but I’m equally frustrated that I need it. I feel lucky to have health insurance that I can afford and to be able to use it to my advantage.

Similarly, I’m lucky that I have a job that allows me time off. Not everyone has the privilege of taking a few hours off from work to go to a doctor’s appointment. For some, that is an entire lost day of income. In fact, a 2019 study from the Crohn’s & Colitis Foundation reported that “IBD patients are estimated to have three times more work-related lost wages than non-IBD patients.”

Other medical expenses — copays, emergency room visits, costs of specialized diets and therapeutics, or the costs of ostomy and port supplies — add up, with the latter costing an average of $300–$600 per month alone.

The CCF study also found that people with IBD spend more than three times as much money on direct care than people without IBD, and their annual out-of-pocket costs (not even including insurance premiums) are more than double that of other patients. These costs typically are for medications, emergency room visits, and “healthcare services associated with relapsing disease, anemia, or mental health” challenges.

Another study found that the average lifetime total cost (in 2016 dollars) of managing Crohn’s (counting inpatient and outpatient medical care plus pharmaceutical costs) amounts to over $600,000 — if you have insurance! — while someone with UC will incur a lifetime cost of over $405,000.

This means that, collectively, all the people living with Crohn’s and colitis in the United States “are expected to incur lifetime total costs of $498 billion and $377 billion, respectively.” In the 7 years since that data was collected and crunched, the numbers have almost certainly increased.

In another study from 2021, researchers described the “financial toxicity” of life with IBD, and found that “23% reported financial hardships due to medical bills, 16% of patients reported [cost-related medication nonadherence] and 31% reported cost-reducing behaviors.”

A bit ironic, isn’t it? IBD causes financial stress, but stress influences IBD flares, which then require more medical attention, which then feeds the financial stress.

Finding help

If you live with IBD-related financial stress, it may help to know about several potential avenues for relief.

Take advantage of payment assistance programs

Many pharmaceutical manufacturers and patient organizations operate programs to help people who are in need of financial support to pay for their medications, treatment, and other services. You can find a list of programs here.

Look into hospital-based help

If you have an emergency room visit or an upcoming surgery, ask your hospital if it has financial assistance programs to help you pay. Each hospital is different, so speak directly with the financial assistance office to ensure you’re receiving accurate information pertaining to your stay.

Maximize insurance benefits

If you have health insurance, try to find a physician who is in-network to cut back on costs. This is especially true if you’ve been newly diagnosed, as costs are highest — averaging $26,555 — in the first year after diagnosis.

Negotiate your bills

If you don’t have insurance or are struggling to pay your deductible, know that you can also negotiate your medical bill. If you’re unable to pay the high cost, contact your hospital’s billing department and discuss negotiations. This may take some time — and you might get some pushback — but keep trying. You can also discuss setting up payment plans.

Use nontaxable health accounts

If you’re employed, ask if your company offers a flexible spending account (FSA). If you’re self-employed or for other reasons buy your own health insurance, you may be able to open a health savings account (HSA). When you enroll in one of these programs, you set money aside, before taxes, in a separate account.

You can use your spending accounts for various health products and services, as well as emergency room visits and hospital stays, and you won’t be taxed on this portion of your income.

Advocating for change

I often think about that conversation I had over dinner with my friend. It’s easy for me to go down a rabbit hole of negativity: Why do I have to be saddled with a miserable job just for healthcare? Why don’t I have the freedom to work somewhere without health benefits? Why don’t my other friends have to deal with insurance disputes? In what world is it right that the cost of one infusion is equivalent to a down payment on a house?

It can be cathartic to voice these issues, but there are few answers to them. I’ve learned that getting involved in advocacy helps.

For example, I recently completed the Crohn’s and Colitis Foundation’s Health Access Survey. The more people who take it, and the more data the foundation collects, the more it can work to raise awareness of the challenges — including financial! — that people with IBD experience, and also develop more resources for them.

There are lots of ways to become an advocate, and it can be a satisfying way to transform an IBD experience into something positive.

The takeaway

A chronic illness grants you a unique perspective, and although my financial burdens can be specific to IBD, I know that I’m not alone in having them. My friends and family experience their own stressors, and financial strain affects nearly everyone at some point in life, regardless of whether they have an IBD diagnosis.

When things get rough (and expensive), I take a breath. I sometimes have myself a cry. But as frustrated as I get, I remind myself that having effective medications, a healthy lifestyle, and a body that isn’t in constant, consistent pain is well worth it.

You simply can’t put a price on that.