How Expensive is Crohn's?

When my daughter, now 28, was growing up, I had one concern above all others. I was terrified that the cost of Crohn's disease would wipe us out and make it impossible to care for her properly.

I am just one of many patients with chronic conditions who actually worry more about the expense of the illness than its progression. When a friend or acquaintance gets a diagnosis of a serious medical condition, most people assume the patient's focus will be solely on getting healthier. Not true.

The financial aspects of inflammatory bowel disease (IBD) spread across the entire life of the patient and his or her family. According to the Crohn's Colitis Foundation of America (CCFA), around 1.4 million patients in the United States suffer from IBD, which includes both Crohn's disease and Ulcerative colitis. Nearly 30,000 new individuals receive an IBD diagnosis every year.

CCFA states that a 1990 study reported medical costs of IBD in the U.S. at between $1.4 billion and $1.8 billion each year. About half the total went for surgery and inpatient care. The study estimated expenses of $0.4 billion to $0.8 billion annual for disability costs of the illness in terms of lost labor, resulting in a total yearly tab of between $1.8 billion and $2.6 billion.

Here are the categories that make Crohn's disease expensive for my family:

Food: A patient with active disease or a patient who has had a significant small bowel resection has a lot of food restrictions. I'm even sensitive to aging meat and have to avoid certain "discount" supermarkets as a result. While my husband and I regularly take advantage of coupons and rebates, I can't just grab what's on sale this week and toss it into the shopping cart. During periods when I need to supplement my diet, my food of choice is Ensure in the butter pecan flavor. It takes up to a six-pack a day at $8.99 plus tax.

Some patients exist for months on hyperalimentation (tube feeding) performed each night at home. The cost of the equipment and the special food required is impossible to predict because it depends on whether health insurance is paying part of the tab.

Federal research expenditures: The National Institutes of Health (NIH) estimates that in fiscal year 2009, which begins October 1, 2008, $80 million has been targeted for IBD research. This figure has stayed constant for three years. Although the gross number makes Crohn's patients hopeful that someone is trying to make their lives better, it still represents tax dollars from our pockets.

Prescriptions: While successive Crohn's surgeries have been necessary to keep me upright over the last 25 years, I still have to take three drugs. I am blessed as a Federal retiree to be able to purchase comprehensive health insurance and get these medications by mail at $35 each for a 90-day supply.

The retail price of these drugs for the uninsured is much higher than the contract price my health insurance pays. Nevertheless, insurance recently paid $709.20 for 3 months of Asacol, $359.94 to the mail-order pharmacy for Imuran, $259.67 for a B12 spray and $106.33 for Colestipol, a generic drug. I also require medications for other conditions.

Procedures: They're often necessary to get biopsies or track down mysterious symptoms. For a recent colonoscopy to see the bottom of my small intestine, the physician sent my insurance company a bill for $963.00. This is exactly what I would have to pay if I had no insurance. The hospital submitted a charge of $2,914.85. I have yet to find out what the anesthesia cost. A CT scan the prior week resulted in charges of $664.00 from the radiologist and $3,416.00 from the hospital.

Employment: Crohn's disease takes a financial toll beyond lost days of work. After my last resection, I battled an infected incision for months. Eventually, I traded a well-paying, full-time job for an early, much reduced retirement. When able, I accept part-time work. For many patients, the only choice is Social Security Disability if they can qualify.

Insurance: Providers often deny IBD patients coverage for both life and long-term care insurance. The availability of disability insurance for someone with this illness is scarce. If health insurance is available, it might include a permanent exclusion for any Crohn's costs or a pre-existing condition provision that defers coverage for the illness until a certain period of time has passed. The best bet is to obtain coverage through a large employer such as the Federal or a local government, either by the patient or a spouse who can provide coverage.

Formulating a budget to handle the expenses of Crohn's disease is tough. Sometimes the co-pays from repeated hospitalizations within a short time are devastating. The situation is much like the chicken-and-egg debate; the patient needs a job to pay the medical bills, but without medical care, the patient is sometimes too sick to work.

It's essential to make the first category, after housing and food, an illness or emergency stash to cover the tough times. Unfortunately, for many, this means foregoing some of life's amenities such as vacations, trips to Starbucks and visits to the mall until the total equals at least several months' living expenses.