I get asked this question many times by friends and acquaintances. They 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 almost 30 years of my journey with the disease I have maintained my Health Insurance. This is what I tell them when I try to explain.
The “Reasonable & Customary” Health Insurance Financial Gap
Any Chronic Disease such as Crohn’s Disease and Inflammatory Bowel Disease (“IBD”), which are 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 Seventy (70%) Percent of Reimbursement kicks-in. Moreover, what Health Insurers deem “reasonable and customary” in St. Louis, MO, for example, may be vastly different from the actual charges in New York City, for example, but these geographic cost adjustments are typically not made by Health Insurers and that could leave a rather large FINANCIAL GAP in the “Charged Amount” which the Patient will have to pay, in addition to the Thirty (30%) Percent balance.
“In-Network” Treatments – Divergence of Financial & Medical Patient Interests
The basic financial fallout is different when the Patient sees an “In-Network” physician but these days there are usually Health Insurer prerequisite “variables” attached to that AND, more importantly, the more complicated your case of Crohn’s or IBD, for example, the more reason you need to see a well-renowned Medical Specialist (as these doctors see more of such cases and thus are better prepared to help you). But these specialty or more experienced doctors increasingly do not accept ANY Health INSURANCE. Since these “Specialists” are in such high demand due to the proliferation of chronic, auto-immune and incurable diseases, they are not lacking for patients and thus do not have to rely upon Health Insurers to increase their patient clientele. Additionally, these Specialists can utilize their unique positions to focus on simply practicing medicine and helping patients as opposed to being the CEO of a Medical Practice which must employ several office workers just for the purposes of facilitating Reimbursement from Health Insurers. I say that with the utmost respect for these medical professionals because if most had the choice they would opt to be the scientists they trained to be in medical school so they could help heal patients.
While it is ALWAYS in the Patient’s best financial interests to see an “In-Network” medical professional when they have Health Insurance, those interests may not align with the Patient’s medical interests in complicated cases of chronic disease or even in diagnosing cases of Crohn’s or IBD, for example, due to their almost individualized symptoms and often difficult to recognize initial manifestations.
Out-of-Pocket Costs of Alternative and Holistic Medical Treatments
Many patients with incurable chronic diseases like Crohn’s Disease are also increasingly turning to “Alternative” treatments or organic foods to combat BOTH their disease and any medication side effects and/or the stress which accompanies their chronic patient journey. Short of minor acupuncture and psychological 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. That “individualized efficacy” does not make for prudent general Reimbursement rules. Furthermore, the providers of these alternative treatments are typically not “objectively” or traditionally “credentialed” such that the Health Insurers cannot readily trust their medical expertise in having in-network physicians refer or recommend patients to them. Yet, many Crohn’s Disease patients, for example, swear by these alternative, holistic and organic treatments but they must pay for them out of their own pockets.
Effects of Accumulation of Medical Debt w/ a Chronic Disease
In my case of having Crohn’s Disease for almost 30 years, the “accumulation” of these aforementioned 30% fees, Balance Bills, Specialty Physicians and Alternative Treatments has created substantial medical credit card debt. This aggregate financial burden is common amongst people battling chronic disease and often leads these patients to seek bankruptcy protection in order to reorganize their financial lives. However, this can be a tricky proposition as these patients may wind up having debts written off by medical providers with whom they must have an ongoing relationship due to the chronic nature of their disease. But, there are ways to “negotiate” fair resolutions to these situations since bankruptcy no longer carries with it such a negative stigma and medical professionals are more understanding of the effects of chronic medical debt so long as the patient is candid and upfront with the medical professionals. (Please see my Video Interview with a prominent Bankruptcy Attorney regarding “Bankruptcy Options for the Chronic Disease Individual.”)
Incurable Chronic Disease & NEW Promising, but Expensive, Drugs
In addition to the above VERY BASIC analysis, the cost of NEW and more promising Crohn’s Disease medications, for example, 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 the chronic disease itself. I am going through this at moment with severe respiratory problems which began after I started using one of the “Biologic” drugs which typically help MANY Crohn’s Disease patients. 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, if not most, patients with incurable chronic diseases are all too willing to take due to the lack of effective treatment options and the mere chance of an improved lifestyle.
One Chronic Autoimmune Disease may lead to Another
Many Crohn’s Disease patients, for example, on the more severe “spectrum” of what is a “broad spectrum disease,” often develop secondary auto-immune 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 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 immunosuppressant drugs.
Multifaceted Cost of being Disabled from a Chronic Disease
Finally, and please understand that the foregoing is a simplified analysis of a complex problem which has individualized components and can be affected by a variety of variables, the disabling (and unpredictable) nature of many chronic diseases prevent the patient from consistently working and earning a living. Depending upon the severity of the disease and/or the frequency of chronic disease flare-ups, the inability to consistently create cash flow worsens the effects of continually accumulating medical debt. Additionally, besides the disabling physical effects of chronic disease exponentially compounding its financial effect, the feeling of “helplessness” caused by ravaged personal credit ratings and constant medical creditor dunning notices can lead to depression. This depression is real and understandable given the realities of a life constantly battling these types of pervasive chronic diseases on a multitude of fronts.
For the chronic disease patient, knowing that you will, at one time or another in the future, have to continue seeking expensive medical treatment combined with the physical uncertainty of your ability to work is almost like literally adding “Insult to Injury.”