The high cost of insulin - a case study

The Corona Virus is getting plenty of media attention these days, and rightly so. However, life goes on and all the ailments that were present before Corona are still present now. Instead of rehashing old points about COVID this column is dedicated to a different subject—the high cost of insulin.

To illustrate a few points, I will be using a patient of mine as a case study. This is done with her permission. This person (we will refer to her as “M”) has type 1 diabetes. This is also known as insulin dependent diabetes, because without insulin a type 1 cannot survive. People become type 1 diabetic when their pancreas stops working. It has nothing to do with diet, or exercise, or being overweight. It is simply a combination of genetics and poor luck.

“M” controls her blood sugars using an insulin pump. This piece of equipment is a small computer that delivers insulin to a patient, approximating what a healthy pancreas would do. This pump needs to be refilled with insulin a few times a month. As a primary care doctor part of my job is to write the prescription for the insulin.

This month I sent the prescription to Walgreens and the patient was surprised to find the cost to pick it up was $304. Remember, this is a life sustaining prescription that the patient will need every month for the rest of her life.  As a doctor I know that this is not a fair price for this medication. I was able to contact the pharmacy and pull a few strings and recommend that the pharmacist apply a coupon to reduce the cost to $68, something the pharmacist should have been able to work with the patient on without my intervention.

Episodes like this happen every day in pharmacies across the country. It is such a problem that Maine joined several other states in passing legislation to put a cap on out of pocket insulin costs. LD 2096 caps the monthly insulin expense for diabetics at $35. The problem here is that the law only applies to people with “state regulated commercial insurance.” Unfortunately, “M” is one of the many Americans who is currently un-insured.

The other day we ran into another medical systems problem. “M” needs an endocrinologist—or diabetes specialist—to manage her insulin pump. Most type 1 diabetics are co-managing this way with a specialist and a primary care doctor. Despite her clear need it was difficult to find a specialist willing to help us. There is at least one private practice locally that refuses to take any un-insured patients (even those willing to pay for the service with their hard-earned money). Mercy apparently has a policy where they don’t accept “outside referrals,” meaning that they will only help patients with a primary care doctor who works for their system. We finally found an office willing to help on our third try. 

I have spent hours helping to coordinate care for “M” for things that should be built into our system. Delays in care lead to patient harms. We know that patients just like her are forced to ration medication because the cost is unaffordable. Although progressive laws like LD 2096 are a step in the right direction, they often leave out those who are most vulnerable to high costs—the uninsured.

We need to do a better job as a health system to make affordability the norm, not the exception. We need to increase the cooperation among health systems so people are not excluded based on who they work for. And we need to support patients with chronic disease, so they don’t face the additional stress of navigating an un-necessarily complicated health system on top of taking care of themselves. We owe this to our patients and the people who are doing their best to take care of them.