Second Opinion: Diabetes Patients Using Insulin Need To Object To Rising Drug Costs

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Editor’s Note: This article is a part of an Op-Ed series, “Second Opinion,” where patient experts share their take on current research, news, and trends in health and medicine. The views expressed in this article do not reflect the opinions or views of HealthCentral.com.

The type 1 diabetes community is in a state of justifiable outrage over the escalating price of insulin. Today a typical vial purchased at retail level costs between $200 and $250. With many of us needing multiple vials per month to survive, that cost is alarming. The question many of us ask is, who is responsible? Is it the manufacturers, the Pharmacy Benefit Managers (PBM), or the health plan designers who are to fault? How about patients? Are they to blame?

In my opinion, all four, and others as well, bear the responsibility. In the diabetes online community, we have focused our outrage on manufacturer’s profits, the impact of PBM rebates and discounts, and the problem of health plan design. But we seldom talk about our own responsibility. I know you are likely asking, what did we patients do? In my opinion, we took our eyes off the single most important factor in managing our diabetes: insulin. Instead, we focused on things like pumps, continuous glucose monitors, meters, and other technology.

To be clear, I love technology. Later in the summer of 2017, I will begin wearing the newest, greatest pump, and I am excited. It will be incredible to be on the leading edge of technology once again. But while I feel better about getting this newest, coolest pump, I must acknowledge that there are people who cannot afford insulin, people who are cutting their dosage with water, or just as bad, people who go without food or other medications so that they can afford insulin.

In all the years I have discussed the wonder of the latest technology, I have seldom, until recently, complained about the cost of insulin, and I am not alone. The type 1 diabetes community, as a whole, has not shared its outrage. We will spend hours comparing the merits of monitoring systems and pumps, yet we have failed to acknowledge that without insulin, none of these breakthroughs make a bit of difference.

I have written numerous times about complications and the importance of good control. I have discussed the best places to put my pump set. But I and others have failed the community by not focusing on the affordability of the one thing we must constantly have in order to live. Now this most obvious topic has caught up to us.

So how do we begin to make our voices heard? First and most importantly, we have to do what I am doing today, and accept our share of the responsibility. Then, we have to move forward: We have to make people understand how important insulin pricing is to us. We have to say it to insulin manufacturers, to the PBMs, and to health plan administrators. We cannot stop saying it: We need to afford this drug to survive.

I want faster acting insulin and I want better technology, but all the other stakeholders must understand that I need price restraint. And unless I am telling them that every day, in every way I can, I cannot expect them to know it.

So what must we do? I propose three action steps:

  1. Use medication rebate programs. They aren’t perfect, but if we use them, they may improve.
  2. Tell our employers and our representative in Congress how we’re affected by insulin costs.
  3. Educate others about insulin pricing, and encourage them to speak out as well.

In other words, we need to USE our voices to demand better treatment. Speak loudly, and often. When we do this, we as patients will be upholding our part of the bargain to gain control of escalating insulin prices.

Disclosure: Phillips attended an insulin summit sponsored by Eli Lilly and Company in 2017 and the company paid for his room, transportation, and meals.

See more helpful articles:

A Beginner’s Guide to Taking Insulin

Insulin & Pumps

8 Myths About Insulin