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Why I’m Being an Advocate for T1Ds

September 18, 2019

I’ve had type 1 diabetes for 36 1/2 years, and, for the majority of that time, it’s been a fairly invisible condition for me. For the past six years or so I’ve had a (somewhat) noticeable insulin pump on my waist, but, all in all, if you looked at me, you probably couldn’t tell I have diabetes.

But, over the last year or so, I’ve been active across social media spreading the word for change in the way people with diabetes are treated. Over the past few months, I’ve been reaching out and meeting with state politicians to push for legislation to control the companies that are taking advantage of me and my fellow T1Ds.

Why? Mainly, because I’m tired of being treated like nothing more than a commodity.

How am I a commodity, you ask? It’s about the profit I represent to all of the pharmaceutical companies, insurance companies, pharmacy benefit management (PBM) companies, medical device manufacturers, and every other company that’s marketing crap for diabetics’ consumption. (All low-carb, of course.)

Over the last 10 years, it’s gotten out of control, and I feel like if I don’t take a stand, if I don’t speak up for myself, if we’re actually reaching the tipping point I think we are where we have to say “Enough” but I don’t do my part, then I won’t have any right to complain in the future.

Over the last 10 years, the price of insulin has gone up over 300%, with prices rising to the point that uninsured diabetics can’t afford it. Even people with insurance are struggling. But why?

It’s unjust because, when insulin was first isolated by Dr. Frederick Banting and his team at the University of Toronto some 97 years ago, they sold their patents for $1 each, and, famously, said “insulin doesn’t belong to me, it belongs to the world.”

The insulin manufacturers today (Eli Lilly, Novo Nordisk, and Sanofi, who produce 95% of the world’s insulin) are conspiring with each other and the insurance companies (and PBMs) to keep that price rising. There have been no real improvements in the insulins of the past 10 years, but still the prices rise.

And it wasn’t cheap to begin with. Just 12 years ago a vial of insulin cost $86. Now that same vial is $351. A box of insulin pens (with five pens to a box) can go for $1,500. And it could take more than one vial or box per month.

And, in case it wasn’t clear, this treatment isn’t an option. Without insulin I will die.

But back to me as a commodity. I can’t survive without insulin and it’s delivery devices. And my survival depends on keeping my blood sugars balanced, so having an ability to know what they are is important, too.

Because of this, I have to buy insulin and delivery devices and testing devices, and I have to do it every month. These companies figured out that if the prices for their products go higher, then their profits will also rise. I’m worth tens of thousands of dollars to these companies each year.

Now multiply that by the 1.25 million type 1 diabetics in the U.S. and you’ll understand why these greedy fu*#ers are jacking their prices up.

I’ve met with my state representative, two state senators, and was part of a panel pointing out this problem for Pennsylvania’s Democratic Policy Committee to push for price-cap legislation. Because they can’t be trusted to do the decent thing themselves.

Bills are making their way through the state House and Senate, but this won’t be the end. Going forward, you’d better believe that I’ll be shouting from the rooftops when I feel like people with diabetes are being mistreated.

Because if we don’t stand up for ourselves, who will? I’m no longer willing to accept that I’m just a commodity. I’ve decided, instead, that I’m going to be a force for change.

2 Comments leave one →
  1. September 20, 2019 1:31 pm

    Bravo. Loved in particular: “I’m no longer willing to accept that I’m just a commodity”
    We shall overcome. #insulin4all

  2. Jodi Schaff permalink
    November 1, 2022 7:26 am

    Thank you for being so clear + advocate for this disease. My husband Randy is a type 1 diabetic for 54 years. This has turned into a business not a care.
    I also appreciate the clarity you express on how the world is not educated on diabetics.
    Type 1 + being in good health advocating is a big accomplishment.
    I also find when we speak to “future scrips” or whoever is a distributor there are coupons or offers but it’s finding the 1 person that cares. Thank you for caring
    jodi schaff

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