toles500

Me: Why is your blood sugar so high?

Patient: Couldn’t afford the insulin

Me: But you have insurance and it is on your insurances formulary. I thought you told me it cost you $30 a vial

Patient: Yeah, this time it costs me $150. And ya know, I gotta eat….

A couple of years ago I was fixated for a while on the cost of insulin. Mostly, I fixated on why it was so expensive. From 2012 to 2016 the price of insulin doubled and to have Type 1 Diabetes meant someone (the patient, the insurance company, the government) had to pay on average $18,500 a year. In other words, without insurance they have to budget to buy a new car every year, with no trade-in.

Having Type 1 Diabetes is basically like having a birth defect. The prospective patient is at risk to losing the ability to manufacture insulin from birth with exposure to a certain virus being the trigger for this to actually occur. The only treatment for folks who acquire Type 1 Diabetes is insulin replacement therapy. Without it, they die. Well, we are pretty sure they do. Since insulin was discovered in the 1920s it has been unethical to withhold insulin as a medical experiment from Type 1 diabetics. Prior to that, by literally starving the patient to death, you could buy them up to a year. Since the 1920s, we have had insulin. The discoverers sold the patent for a dollar a piece so that humanity could benefit.

Type 1 diabetes is a great disease (as diseases go) for a doctor to treat. The body has a deficiency. Replacement is relatively straightforward. If the patient is cooperative with regime (checks blood sugar regularly, administers insulin to keep sugar down) he or she can expect to live into their 8th decade. The dad of my best friend growing up was a Type 1 diabetic and he survived his into his 70s with diabetes only to die in Katrina. Though special diets may help and exercise may help, what is required is insulin. Without it, ingested sugars and fats convert to ketoacids instead of energy for the body and then death happens. Almost always when someone with Type 1 diabetes has ketoacids in their blood they are either insulin deficient (“well, doc, I meant to take my insulin this morning but…”) or have another illness that has increased their insulin requirements.

Which brings us to the cost of insulin. The prices, it seems, keep going up. For us non-diabetics it would be like charging us for air. Not only that, but charging us extra after exercise for the extra oxygen we extract. Why is it going up? To find out I spent a lot of time reading about our really crappy system of pharmacy distribution and payment systems. Remember the corner pharmacist? Now he is a pharmacy benefits manager. They control the prices the pharmacies have to pay for drug prior to distribution and control what the patient pays (the money they make off of this is called “the spread.” They make drug companies give rebates to get medications on the formulary that they rarely share with patients. They overcharge patients for medications and pocket the difference. They make pharmacists sign contracts that forbid them to tell the patient that the $40 lisinopril prescription is available for $4 at Walmart. They make consumers use coupons to artificially inflate the prices even more.

As much as I wanted to blame this new middleperson arrangement for the rising prices (and it can be blamed for the fluctuating prices), PBMs are not the cause. The insurers try to convince us that it isn’t them but a lack of personal responsibility. Drug companies try to say that cutting edge medicines are expensive and Americans deserve only the best.  Neither of these are true. As was reported in Vox:

Luo, the paper’s lead author, doesn’t find the “cost of innovation” argument very convincing. In his research, he’s come across many examples of the same insulin products that have been continuously available for years without improvements, and yet their price tags have gone up at a much higher rate than inflation.

“The list price of these products are already out of reach for most Americans living with diabetes — in some cases over $300 a vial,” he said. “It is also strange to see Humulin still priced at over $150 a vial considering this product was first sold in the US in 1982.”

In other words, drug companies are flat out raising prices. Why are they are doing it? Because they can. There are only 3 companies that make insulin, the products are not generic (small improvements patented every 10 years to keep a new patent), and oddly the prices are the same across all the companies.

So what can we do to stop it? As a physician, there are a couple of things I can do. There are “human” insulins that is relatively cheap (NPH and Regular, alone and in combination) that I can write for my Type 2 diabetic patients. In theory this would, over time, drive the price down if we all did it. I can (and do) only use formulary medications whenever possible, even though it means switching several times a year at times. As a patient, consider using cheaper “human” insulin if you have Type 2 diabetes. Talk to your doctor about making the switch. Join in the protests over the cost of insulin. Let policymakers know that access to life sustaining hormones should be a right. To paraphrase Martin Niemoller, first they come for your hormones….