The High Cost of Care

Welcome to Day 2 of Diabetes Blog Week.

Insulin and other diabetes medications and supplies can be costly.  Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage.  So today, let’s discuss how cost impacts our diabetes care.  Do you have advice to share?  For those outside the US, is cost a concern?  Are there other factors such as accessibility or education that cause barriers to your diabetes care?

As I thought about this post, I felt the urge to start with a disclaimer or an apology. But I’ll start with thankfulness. I may complain about having been forced into an insulin that doesn’t work as well for me or having to wait on hold to get a real person to talk to about my supplies, my medicine or my next appointment. But at the end of the day, I’m very lucky when it comes to diabetes costs.

And I don’t use “lucky” in a flippant manner. I generally refuse to refer to myself as being lucky, blessed (or in some other way gifted what I need) to be where I am in my life when it comes to career, home and relationship. I work hard and make choices to get to where I am. But when it comes to the access to what I need to not only stay alive but be healthy, I’m really lucky. I have insurance, I have an HSA, I have the means to pay my high deductible and I have the best medical care in the world right in my back yard. That, my friends, feels a lot like luck.

High Monetary Cost

It doesn’t mean that I don’t feel the cost of diabetes. So to summarize the monetary cost of care… Diabetes is a very expensive disease to live with.

Yesterday I talked a little about dealing with the unexpected. A couple of years ago, I didn’t expect to nearly run out of insulin because my insurance company denied coverage for the insulin I was prescribed and no one told me. They tried faxing information to my doctor’s office, faxes that they claimed were never received. Once I got through the hoops and got the right paperwork to get my insulin, I had to get a new prescription for a local pharmacy. I had 9 hours of insulin left. When I told the nurse that on the phone, she worked to move heaven, earth and the cumbersome health care system to get me that prescription. Then the pharmacy called me when they received the order and the tech asked me, “This is an expensive prescription, it looks like your insurance accepted it but it’s still $400. Do you want us to fill it?”

I had sighed in relief that it was only $400… with insurance. “Yes,” I said. “I need it to live. When can I pick it up?” I’m sure she didn’t understand, but I was nearly in tears not sure what I would do next to get what I needed to survive. To many in our community, money is a barrier to healthcare and life saving medication.

When I vented about the situation on Facebook, it’s not a surprise that someone commented, “You can get insulin at Wal-Mart without a prescription for like $25.” Someone who, to the best of my knowledge, is not impacted by diabetes and definitely isn’t a doctor or pharmacist. There are so many types of insulin. I struggled to explain why that wasn’t the best solution for me, but if I had found myself without, I’d have tried it. This article does a good job of explaining why Wal-Mart insulin is not the best solution for high insulin prices.

I play the end of the year game like many with high deductible plans do. I squeeze as many appointments, tests and prescriptions in before the end of the year as possible so that when the deductible resets on Jan 1, we have a cushion and time before the high costs once again smack our bank account in the balance. We have time for the HSA contributions to build up so that we can pay for things with pretax dollars.

High Personal Cost

The monetary cost of diabetes care is high and uncertain in our current healthcare realm. But it’s not just the money. There’s a high personal cost to diabetes care as well… beyond what comes with the disease alone. The personal administrative BS we deal with is ridiculous. I’m reasonably well versed in the right questions to ask and how to do the proper research, on top of that I have time to devote to fighting the healthcare/insurance system for what’s best better for me. Not everyone can do what I do.

It can take hours on the phone sometimes to win the battle (and it IS a battle sometimes)… during business hours of course. Someone with an hourly job, may not have the hours to step away from their work at that time or the flexibility take a call when someone finally calls you back. There are people who are taking vacation days or unpaid time off just to go to the doctor, then to struggle through a medical device or prescription appeal?

And the paperwork is not simple. Understanding the process for your own provider can be difficult and policies change regularly. Then, what happens when your medical bill is wrong?

When I was first diagnosed, I saw a CDE who basically gave me Diabetes 101. The coding department billed it as physical therapy (accidentally, I hope!!) and my insurance denied it flat out. I struggled with the insurance and the billing department at the hospital and it took so long that they sent me to collections. I was frustrated and not getting straight answers and I had no idea what I was doing. So I tweeted in anger at the hospital and they responded and put me in touch with an ombudsman. I had to Google “ombudsman” to find out even what they did. They fixed my problem within 2 business days. I didn’t know that this help was available to me, because no one tells you how to do this. You typically have to figure it out on your own.

I definitely don’t want to minimize the monetary cost of this disease. One of the biggest challenges facing people with diabetes today is the cost of medication. It’s not just sky high insulin prices, the other medications that some of us take have high price tags too. However, it’s important to recognize that managing the “administrative” side of diabetes costs us a lot of time, energy and stress as well.

Check out other posts on today’s topic here.