Crohn's Disease details you never thought of

Why are Chronic Diseases like Crohn’s Disease, Colitis and Inflammatory Bowel Disease (“IBD”) such expensive medical conditions for Patients who even have Health Insurance? 

I get asked this question many times by friends and acquaintances who care a great deal about me and can’t understand how my Crohn’s Disease has so badly damaged my financial “health” when all along the way I have maintained my Health Insurance. This is what I tell them when I try to explain.

Any Chronic Disease such as these, which is also incurable with autoimmune components, can create ongoing needs for medical care, expensive drug treatments, unpredictable or emergent hospitalizations and possibly several surgeries. While having Health Insurance is BEST, people don’t typically understand that in an ideal setting the Health Insurance Company may pay 70% of the cost of what they deem to be “reasonable and customary” for any of the aforementioned medical costs but there may be also be a significant “Deductible” which has to be met before that 30 percent of Reimbursement kicks-in. 

Moreover, what Health Insurers deem “reasonable and customary” in the Twin Cities, Minnesota for example, may be vastly different from the actual charges in New York City, for example, but location adjustments are typically not made by Health Insurers and that could leave a rather large GAP in the Charged Amount which the Patient will have to pay, in addition to the 30% balance. This is different when the Patient sees an “In-Network” physician but these days there are usually “variables” attached to that AND, more importantly, the more complicated your case of Crohn’s, Colitis or IBD, the more reason you need to see a well-renowned Specialist (as they see more of such cases and thus are prepared best to help you) and these doctors increasingly do not accept ANY Health INSURANCE. It is in the Patient’s best financial interests to ALWAYS see an “In-Network” medical professional but those interests may not align with the Patient’s medical interests in complicated cases or even in diagnosing cases of Crohn’s, Colitis or IBD due to their almost individualized symptoms and often difficult to recognize initial manifestations.

Many Patients with Crohn’s, Colitis and IBD are also increasingly turning to “Alternative” treatments or organic foods to combat the disease and any medication side effects and/or the stress which accompanies the entire IBD journey. Short of minor acupuncture benefits, Health Insurers understandably are reluctant to get fully behind these “holistic” approaches because in many instances what works for one Patient does not work for another. Or, the providers of these alternative treatments are not properly or traditionally “credentialed” such that the Health Insurers can readily trust their medical expertise. Yet, many IBD Patients swear by these treatments and thus they must pay for them out of their own pockets.

In my case of having Crohn’s Disease for almost 20 years, the accumulation of these aforementioned 30% fees, Balance Bills, Specialty Physicians and Alternative Treatments has created medical Credit Card debt that is stifling. In addition to the above VERY BASIC breakdown, the cost of NEW and more promising Crohn’s/IBD medications is usually extremely high and Health Insurers typically don’t cover a significant portion of their costs until said medication becomes more widely accepted. These newer medications might also come with side effects which in some instances could turn out to be as painful, disabling and expensive as IBD itself.   It seems there’s no way to tell who these new drugs will help and who they will harm but it is a chance many IBD Patients are all too willing to take due to the lack of effective Treatment options and the "incurability" of Crohn’s Disease. 

“Finally,” and please understand that this is a complex and individualized situation which I am trying to simplify for the purposes of communicating a basic explanation, many IBD Patients on the more severe “spectrum” of the disease often develop secondary autoimmune diseases such as Rheumatoid Arthritis, Lupus, Fibromyalgia, etc. and that begins an almost duplicate “journey” through the Healthcare system causing the Patient to incur all of the aforementioned expenses albeit for a different disease. Additionally, years (or in some cases just months) of taking certain effective IBD drugs can also create serious (and expensive) medical problems which must also be addressed such as Hip Replacements (from taking the drug Prednisone) or, for example, repeated hospitalized bouts with Pancreatitis from taking immuno-suppressive drugs to treat Crohn’s Disease. 

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