7 Things to Know About Health Insurance When You're Managing Crohn's Disease
Living with Crohn’s disease doesn’t just take a toll on your body — it can put a serious strain on your wallet, too. A Crohn’s & Colitis Foundation–led study found that people with inflammatory bowel disease (IBD), which includes Crohn’s disease and ulcerative colitis, face more than three times the annual direct healthcare costs of those without IBD (about $23,000 versus about $7,000 per year on average), along with more than double the out-of-pocket expenses.
... People with inflammatory bowel disease (IBD) face more than three times the annual direct healthcare costs of those without IBD ... along with more than double the out-of-pocket expenses.
— Laura Wingate, Chief Education, Support & Advocacy Officer at the Crohn’s & Colitis Foundation
According to the study, direct healthcare costs are what insurance pays for your medical care: medications, doctor visits, emergency room visits, hospitalizations, surgeries, and the like. Out-of-pocket expenses, as measured by the study, are what you’re personally required to pay after insurance coverage has been applied to your bills, like copays, your deductible, and coinsurance costs. The researchers suggest that the out-of-pocket costs they found are likely an underestimate of overall health care expenses.
That kind of financial pressure makes it essential to understand how your health insurance works and how to use it as effectively as possible, just like any other part of your treatment plan. These practical tools and strategies can help you better manage your healthcare costs.
1. Even With Insurance, You’ll Have Out-of-Pocket Expenses
Even with insurance, people with Crohn’s disease often pay a lot, in the form of deductibles, copays, and coinsurance, especially when they need biologics, infusions, imaging, or surgery. A copay is a flat dollar amount you pay for a covered service like a clinic visit or prescription, while coinsurance is a percentage of the total bill that you pay, with your health plan paying the rest.
Because advanced Crohn’s disease therapies and hospital-based procedures are so expensive, coinsurance charges can be much larger than a typical copay, especially for people who rely on biologic drugs that drive much of the cost of IBD care. It’s crucial to learn how copays and coinsurance work and to talk with your care team and insurer about expected charges before scheduling high-cost treatments, so there are fewer surprises in the final bill.
Your out-of-pocket maximum is the most you will pay in deductibles, copays, and coinsurance for covered services in a plan year, after which your insurance should cover 100 percent of additional covered costs. Research shows that overall costs and out-of-pocket spending are much higher for people with IBD than for people without, so they are more likely to reach this ceiling each year.
Many people with Crohn’s disease also rely on manufacturer copay assistance to make expensive medications more affordable, but some insurers have a “copay accumulator” policy that prohibits that assistance from counting toward your deductible or out-of-pocket maximum, leaving you exposed when the copay assistance card’s limit is used for the year.
A federal district court has ruled that private health insurance plans can't use copay accumulators for brand-name medications that don't have equivalent generic alternatives. If your insurance company still requires you to use a copay accumulator, contact them and ask to be removed from the program, citing the court decision. You can use the Crohn’s & Colitis Foundation’s copay accumulator resources and IBD Help Center to understand your options.
2. You Will Likely Have ‘Tiered’ Prescription Drug Coverage
Most health plans use tiers, or categories, to determine your copay for each prescription. Your plan’s formulary, or drug list, is the master list of medicines it covers, and it can change from year to year, so it’s important to review it during open enrollment to see how your Crohn’s disease drugs are categorized and covered.
Most plans put lower-cost generics in tier 1 with the lowest copays, preferred brand-name drugs in tier 2, and non-preferred brand-name drugs in tier 3, while “very-high-cost” drugs like many biologics are placed on a higher tier that often requires coinsurance instead of a flat copay.
To see where your specific medication falls, you can log in to your insurer’s member portal and look for a link labeled “Drug List,” “Formulary,” or “Prescription Drug List” under pharmacy or benefits, or by calling the member services number on the back of your insurance card and asking them to send you the current formulary for your specific plan.
3. You May Need to Use a Specialty Pharmacy
Many advanced Crohn’s disease treatments, including biologics and other injectable or infused medicines, are considered specialty drugs, which means they often have to be filled through a specialty pharmacy rather than your local drugstore, because they require special handling, storage, monitoring, and support services.
To find out whether you need to use a specialty pharmacy and which one is in-network, you can check your plan’s pharmacy benefits online or call the member services number on your insurance card.
If there isn’t a specialty pharmacy near you, your health plan will often work with a mail-order or centralized specialty pharmacy that can ship your Crohn’s medications directly to your home, clinic, or infusion center, using temperature-controlled packaging and precise delivery windows to keep drugs safe in transit.
4. Your Insurance Plan May Have a Step Therapy, or ‘Fail First,’ Requirement
Some people with Crohn’s disease find that their insurer uses “step therapy” or “fail first” rules, which require them to try and fail one or more lower-cost drugs before covering the treatment their provider originally prescribed. These protocols are common and can delay access to the right IBD treatments.
If your insurance plan uses step therapy, find out whether your state is one of more than three dozen that currently have a reform law and how to request a medical exception or appeal. You and your gastroenterologist can often do this by showing that a “fail first” drug isn’t right for you, helping you get faster access to the treatment you need. You can learn whether your state has a step therapy reform law by checking the Crohn’s & Colitis Foundation’s interactive state map.
5. Some Drugs and Procedures May Require Prior Authorization
Some Crohn’s disease treatments and procedures require prior authorization (sometimes called pre-authorization or pre-approval), which means your doctor has to get your health plan’s approval before you can start the treatment.
This extra review can delay the start of important IBD medicines. Research on IBD shows that prior authorization requirements are linked to slower biologic starts and higher use of healthcare, including hospitalizations. You can sometimes speed things up by keeping a detailed symptom diary, making sure your medical records and test results are up to date, and promptly signing any forms your gastrointestinal office needs so they can submit a complete request the first time.
Your doctor may prescribe you a drug off-label, which means they prescribe a medication different from what the U.S. Food & Drug Administration label says — for example, using a psoriasis drug to treat Crohn’s disease or combining biologics in complex cases. While it’s not uncommon for these drugs to require prior authorization, it varies by drug and insurance plan.
Prior authorization policies are common with IBD treatments generally, but often lead to extra review and a higher chance of insurance denial. If your off-label prescription is denied, ask your gastroenterologist about filing an appeal that explains the medical evidence, cites clinical guidelines, and documents why the insurer’s preferred alternative is not appropriate for you, and consider submitting a personal letter describing how delays worsen your symptoms and daily functioning. The Crohn’s & Colitis Foundation provides template appeal letters your doctor can send to your insurance company if your off-label drug is denied.
6. Ostomy Supplies Are Covered Differently From Drugs
Ostomy pouches, barriers, and related products are usually billed as medical supplies rather than drugs and are covered under a durable medical equipment (DME) or prosthetic device benefit, not your pharmacy benefit.
That means they may have their own deductibles or coinsurance and are often subject to strict monthly limits — for example, Medicare and most private insurance companies typically allow an average of 20 drainable pouches per month — unless your provider or ostomy nurse documents why you need more as a matter of medical necessity.
Instead of using a local pharmacy, most people must order through an in-network DME or ostomy supplier. Items like decorative covers, wraps, or specialized underwear are usually treated as convenience items and aren’t covered.
7. When Coverage Is Denied, You Can Appeal
If your health plan denies coverage for a Crohn’s disease treatment, the denial letter should explain the “reason code” for the decision — such as saying the service is “not medically necessary” or “experimental” — and outline your appeal rights.
Most appeals follow a two-part path: first, an internal appeal with the patient's insurer, often supported by a detailed letter of medical necessity from their gastroenterologist or by using tailored appeal templates from the Crohn’s & Colitis Foundation; second, if the denial stands, an external review by an independent third party that can overturn the insurer’s decision. In urgent situations like a severe flare, an expedited internal or external appeal can be fast-tracked when waiting the usual 30 to 60 days, which could jeopardize the patient’s health or ability to function.
Getting a denial for a needed Crohn’s disease treatment can feel frustrating and scary, but knowing that there is a clear appeals process — and concrete steps you and your gastrointestinal team can take to challenge the decision — can give you back some control. One study found that 97 percent of prior authorization requests for self-administered advanced IBD therapies, including biologics and small molecule drugs, were eventually approved.
With the right support and persistence, there is a strong chance you can get the treatment you need.
The Takeaway
- While Crohn’s disease care is expensive even with health insurance, educating yourself on how your plan works can help you keep your costs down.
- Insurance won’t cover everything, but there will be a cap on how much you pay out-of-pocket each year.
- Learning to navigate prescription drug coverage for Crohn’s is particularly important, as specialty medications and so-called step therapy can make things complicated.
- While coverage for prescriptions and services may be denied initially, you have the right to appeal, and there is a high success rate, particularly when it comes to getting certain drugs covered.
Meet Our Experts
Sarah Goodell, MA
Medical Reviewer
Sarah Goodell is a health policy consultant with over 25 years of experience. She is currently working as an independent consultant focusing on the Affordable Care Act, Medicare, h...
Laura Wingate
Author
As the Chief Education, Support, and Advocacy Officer at the Crohn’s & Colitis Foundation, Laura Wingate leads the organization’s efforts to empower and support the inflammatory bo...