Anyone with a disease knows just how expensive it is to live with a chronic illness. The medications, doctors appointments, surgeries, emergency room visits, and everything in between- it all adds up over time. In fact, I just went back through our records and since we got married in 2009, give or take a bit, we have spent over $4,000 out of pocket on Crohn’s related expenses.
I feel unbelievably lucky that Dan and I have health insurance because of the high medical costs associated with Crohn’s Disease. Every six weeks, Dan goes to his doctor’s office to get his Remicade infusion. So every six weeks, we pay a Remicade copay. We also pay for parking at his doctor’s office, wear and tear on the car (its a 60 mile round trip from our house to his doctor and back), gas, copay for check ups every four to six months, and for other small procedures periodically (bone density scans, colonoscopies, CT scans, etc.).
Paying An Arm and A Leg
Remicade is our biggest medical expense hands down. The insurance we currently have through my employer covers Remicade at 100 percent. That coverage is financially crucial. While I had federal health insurance through my previous job, Remicade was only covered at 80 percent. Now, for those of you who are unaware, Remicade is extremely expensive – it costs approximately $10,000 per infusion. If we didn’t have health insurance, a situation that so many people unfortunately are in, we wouldn’t be able to afford the infusions.
Back to the cost of Remicade- for one year, we were responsible for 20 percent of the cost, approximately $2,000 every six weeks. That’s approximately $16,000 out of pocket a year, a cost that wasn’t doable without some financial assistance. We opted to enroll in Remicade’s financial assistance program, Remistart (which, for those who are on Remicade, is a really great program), and set up an interest-free payment plan with Dan’s doctor’s office so that we could afford the medication. We were very lucky that we had these options available to use and were able to make it work until my new insurance kicked in. Humira has a similar financial assistance program, the Humira Protection Plan. If you are on a different medication, check on the manufacturer’s website- many of them do have programs to help you pay for pricey medications.
Keeping Track of Your Expenses
I try to keep track of all medical appointments so that I have a record of them and their associated costs when it comes to tax season. What many people don’t realize is a lot of out-of-pocket medical expenses are tax deductible. That means all copays, prescription drug, parking for medical appointments, hospital bills, and more can be deducted on your yearly taxes. It is essential to keep a detailed log of every appointment and every bill paid- and keep receipts for everything. I try and keep a running tab going throughout the year- I get really inspired around the New Year and tend to lapse as the year goes on and struggle to put it all together during tax season. You won’t get all of the out-of-pocket expenses back in your tax refund, but you will definitely get some of it. So my advice is to stay on top of it! I prefer to use a crazy, color-coded Excel spreadsheet for all our expenses but do whatever works best for you.
There is one major thing to keep in mind about deducting medical expenses– the amount you pay out of pocket has to be 7.5 percent or more of your annual gross income. So if you make $30,000, you can deduct anything that is $2,250 or more (I am bad at math, so please do not use my calculations as real amounts- check with an accountant for reliable numbers!).
The other tax deductible item that I discovered is medical-related mileage- the miles you travel to and from doctors’ appointments is tax deductible. Now for us, that is great because we do not live near his doctor. When we were at our old apartment, it was a 90 mile round trip to see his doctor every few weeks. We moved a bit closer, but its still 60 miles round trip to see her. So, in the same spreadsheet, I try and keep track of mileage for doctors appointments. Last year alone, we drove 1,204 miles going to doctors appointments. Think about it- that is almost one month’s allotment of miles on my 15,000 mile a year lease!
Now in order to deduct miles for tax purposes, multiply the total miles you drove by 23 cents. So last year, we were eligible to get $276.92 back in taxes for the miles we drove. You should definitely try to track your mileage- a mile here, 5 miles there- they add up over time.
The Final Word
I cannot stress enough how important it is to stay on top of your medical bills and keep track of all of the related expenses. There are few things that can be controlled when it comes to caring for someone with IBD- when they have a flare, a complication, surgery, etc. But we can control our finances and work to ensure that we are on sound financial ground. Look into programs offered by your doctor and take advantage of the tax deductions that are available.
If it weren’t for a bit of obsessive compulsiveness, help from our parents, and the financial assistance options we found through research, we wouldn’t be on solid ground.
Financial Resources (some of these are also in the text above)
Inflammatory Bowel Disease-Attirbutable Costs and Cost-effective Strategies in the US: A Review (article on IBD and costs)
CIMplicity (Cimzia Support Program)