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Those Pesky Facts About Insulin Costs

May 26, 2018

Guest Post by David Kliff, Editor, Diabetic Investor

The so-called “high” cost of insulin continues to get lots of attention. But as I’ve noted before, little perspective has been given to this debate and far too many facts are missing. Yes, I know facts are pesky things, but they are facts nonetheless. Allow me for a moment to provide some examples.

This past Wednesday, Aimee Picchi wrote a piece for CBS Money Watch entitled “The rising cost of insulin: ‘Horror stories every day.’ ” In the piece she writes:

“But no generic version of the drug exists, and three manufacturers — Eli Lilly, Sanofi and Novo Nordisk — control 99 percent of the market. Adding to the complication is the tangled relationship between insurance companies, pharmacy benefit managers, and drugmakers.”

This statement is completely inaccurate as Lilly sells Basaglar, a biosimilar version of Lantus, while Sanofi has Amedlog, a biosimilar version of Humalog and Novolog. Basaglar, as I have noted, is decimating the long-acting insulin market, and if Sanofi got their act together, Amedlog could do the same thing to the short-acting market.

As has become standard for these types of articles, Ms. Picchi found someone impacted; she writes, “One patient who was affected by the price spike was Alec Smith, who struggled to afford insulin after he aged out of his mother’s health insurance plan. The then 26-year-old’s employer didn’t offer insurance, so he considered getting a health plan with a $7,600 deductible, his mother, Nicole Smith-Holt, told CBS MoneyWatch.”

Instead, “He made the decision he would go without insurance” and pay out of pocket, she said. “We estimated [the insulin] would be $1,000, but when he went to the pharmacy, they told him it would be $1,300, so he went home without insulin.

Smith-Holt said she believed her son planned to buy the insulin, manufactured by Eli Lilly, when he received his next paycheck, and hoped he could ration his remaining supply. Instead, he died on June 27, 2017, of diabetic ketoacidosis, a complication resulting from diabetes that can be treated with insulin. It was a little over a month after he had left his mother’s insurance plan.”

Now this is obviously a terrible situation and my heart goes out to Alec’s mother. But as terrible as this incident was, it proves what I’ve said before, in that some patients are either A) under financial stress, B) have crappy insurance, or C) choose to risk going without insurance. Note that Alec’s mom states, “He made the decision he would go without insurance.”

What the article does not state was whether Alec, once learning that his insulin would cost so much, considered the following:

  1. Contacting Lilly to see if he qualified for financial assistance
  2. Rather than filling his entire prescription, take fewer vials until he could afford more.
  3. Investigated other sources to get his insulin or other programs that may offer financial assistance
  4. Asked Mom to help pay for the insulin

Listen, I know that none of these options are pleasant, BUT Alec did have options. There are times when having diabetes just sucks, I get that. However, we live in an age where information is at our fingertips and Alec was not without options. I did some quick surfing on the net and found several programs that may have helped Alec.

Let’s be clear here, I feel for Alec’s Mom and believe no patient should be placed in a situation where it is a choice between paying rent, eating, or getting the medication that keeps them alive. However, the patient does bear some responsibility when they are placed in these situations to do a little research. There are options available IF the patient is willing to do some work.

I should also note that I do not believe that access to insulin is a right, that a patient should get special treatment just because they use insulin to manage their diabetes. By this way of thinking, AIDS patients should be extended the same privilege. And what about cancer patients?

Yes, I know the healthcare system is a mess and needs to be fixed. Yes, it really sucks when patients cannot afford the medications they need. But blaming the insulin companies, trying to place the death of someone like Alec on their doorstep, is just wrong. Lilly did not kill Alec. Alec made a choice to go without insurance. He did have options that may have been available to him; to imply that Lilly killed him is just wrong.

What burns my cookies is that the same people who want price controls or medications given away for free are the same people who complain that the insulins we have aren’t good enough, that the insulin companies should be developing better insulins. It costs millions if not billions to develop new drugs. Lilly alone last year spent over $5 BILLION on R&D. Is Lilly not entitled to get a return on their investment?

As Ms. Picchi correctly notes in her piece, it is not the insulin companies alone who play a role in the cost of insulin. However, like so many, she specifically targets Lilly, Novo Nordisk, and Sanofi as if they ultimately control what the patient pays. We have seen this before and will see it again as everyone likes to dump on big bad pharma.

I am not defending the insulin companies, although I feel they have done a poor job of explaining themselves. My belief is simple:

  1. This so-called problem impacts a small percentage of patients.
  2. There are solutions and programs available provided the patients does a little investigative work.
  3. Price controls and/or government intervention will make things worse and not better.

My solution is also simple as there are several well-funded non-profits whose focus is type 1 diabetes. It is these non-profits that should be targeted by the diabetes blogging community to set up some sort of fund that can assist patients who cannot afford the insulin they need. Listen, there are some very smart people at these non-profits who could develop the criteria on who does and does not get assistance. I’m also pretty sure the insulin companies would work with these non-profits given the PR benefits.

This may not be an ideal solution but it sure beats anything the government would come up with and likely would be done quicker as well.

This whole issue has generated lots of hot air and pontificating; what it hasn’t done is what I just did: offer a simple solution that can be implemented painlessly and quickly. No, it’s not perfect, but it sure beats just sitting around and bitching.