Inspired by a blog post today by Kerri Morrone Sparling, it surely is an eye-opening experience to realize how expensive a chronic illness can be. I’ve been keeping all of the EOBs and receipts from the supplies, treatment and medications Madeline has received since March, mainly to get a sense of how much I need to be socking away in the medical savings account next year. Looking at this information is a bit like staring at an accident scene on the highway: terrifying and yet compelling all the same.
When Madeline became gravely ill with DKA, I took her to the emergency room of our closest hospital. She was there approximately 2 hours (not including the nearly 2 hours we spent in the waiting room), and her treatment cost $4,470.60.
And then she had to be med-evaced to the regional children’s hospital where pediatric intensive care was available to her. She was transported by specialized vehicle (no helicopter ride, as we were in the midst of an ice storm), spent 24 hours in the PICU, and then another 36 hours in the regular pediatric inpatient unit. The transport cost $3,834.40. The total of services billed by the myriad of specialist physicians who treated Madeline while in the hospital came to $5,389.00. And then, there was the plain-old cost of the hospital stay, which covered things like bloodwork, medication, and room & board, was $13, 929.39.
If you are keeping track, that was a grand total of $27,623.39 for Madeline’s entire hospitalization.
Then there are all of the regular and specialty appointments she has needed in the past 9 months. In the early days of her diagnosis, she was being seen by the endocrinology team about every 2 weeks, but then in May the appointments were spread out to occur every 3 months. Each visit to a member of the endocrinology team costs between $124 and $325, depending on the specialty level of the provider being seen. She’s had 9 such appointments since being discharged in March, totaling $2.106.00. She also needed screening for possible advanced puberty (results were negative, thankfully), and that cost $459.00.
So, regular maintenance and monitoring appointments have totaled $2,565.00. And that does not include the regular visits that Madeline has needed to make to her primary care physician.
Ok, then there’s the fact that Madeline moved from MDI treatment to the use of an insulin pump in August. Hazel, as we call Madeline’s insulin pump, and all of her start-up accessories, cost $7,031.00. Pumping supplies are delivered in 3-month increments, costing $970.89. In addition to that, the cost of test strips for blood glucose monitoring total $706.27 every 3 months. Lancets are $68.25, and Ketostix (for ketone testing) are $9.00 per refill. And then there’s the insulin. Madeline uses Novolog, which costs a whopping $717.66 for a 3-month supply.
When figuring out these equipment, medication and supply expenses according to how much we’ve actually used since March, the total comes to $11,323.37.
My brain hurts. The grand total, of all medical expenses stemming directly from the beast known as Type 1 Diabetes, for 9 months only, is $41,511.76.
I have never been so grateful for health insurance coverage as I have this past year. I work for a public institution, so my family has enjoyed very good insurance coverage—much better than that available to us through my husband’s private-sector job. Our out-of-pocket expenses have been manageable, thanks to a no-deductible policy, 100% coverage of hospitalizations, and low co-pays for appointments, medication and supplies. Our largest expense has been the durable medical equipment Madeline needs, which includes her pump and its direct supplies. For those, we pay 20% of the total cost. We’ll take a much bigger hit in the coming year, though, as our co-pay for regular appointments just increased by 75%, and our co-pay for prescription medication increased by more than 50%. I won’t complain, though. For now, we don’t have to choose between feeding our kids and buying a life-saving medication. Imagining this scenario makes me sick to my stomach.
Think about this, though: what happens to those who cannot afford their treatment? Whether they cannot afford to purchase coverage, or cannot afford the co-pays and deductible expenses of their insurance plans, there are people out there who cannot afford to manage their life-threatening disease. Perhaps they cannot obtain insulin and necessary supplies, or perhaps they get them but then overuse supplies while underdosing insulin in order to stretch their dollars. There are people out there who have died because they could not get the insulin they needed. Will this be a situation my daughter faces someday, as she emerges from college with untold student loan debt, an inadequate-paying entry level job, and living expenses that outstrip her resources?