The Human Cost of Unaffordable Insulin and Diabetes Supplies

On a recent sunny afternoon in Southeast Michigan, I witnessed ugly proof of the extreme circumstances many in our Diabetes Community are being forced into thanks to the escalating cost of diabetes medications and supplies.

It all happened in a parking lot outside my endocrinologist’s office in Metro Detroit on a weekend, when he was actually hosting more than 100 patients and their families for a “Patient Appreciation Day.” It was a simple summertime gesture, allowing us all to step outside the clinical setting and casually interact with the healthcare staff, other patients, and about a dozen diabetes vendors.

I had marked this on my calendar weeks before, and was excited to attend the first such event any of my doctors have ever hosted.

No co-pays were required at the entrance, and there was free food and cold drinks, along with a raffle offering multiple prizes.

Even though this was meant to pull us all away from the typical doctor’s office setting, there was still plenty of talk about healthcare and diabetes management – and that black cloud of restricted access and skyrocketing costs hovered overhead, even as the sun shone down on all of us.

The recent EpiPen outrage was a hot topic, and my doctor noted how that mirrored what's happening around insulin prices, which is reflected in recent headlines:

We talked about how the D-Community online has created hashtag initiatives to voice their frustration -- #PatientsOverProfit, #MyLifeIsNotForProfit, and so on. We discussed how nothing has really changed on this front since the last time our D-Community was up in arms over this last Spring. He and I agreed on the obvious, that change is necessary, and we briefly mentioned the big #DiabetesAccessMatters advocacy movement, before he ventured off to talk with others about more casual themes.

Because darn it, this Patient Appreciation event was supposed to be an escape from all that!

But as it turns out, those problems are inescapable... as I witnessed right there and then.

Paying It Forward

Suddenly, I noticed that an older woman was approaching my endo, asking for a few minutes of his time. Even from a distance you could tell she was nearly in tears.

After just a moment, my doctor called out my name and waved for me to come over. I joined them, politely introduced myself, and nervously listened after my doctor told her, “Tell him what you just told me.”

The tears welled up in her eyes again as she described how she was unable to afford her insulin. As a type 2 for several years who’s on Medicare, she talked about the $700 cost of just a single month’s supply of fast-acting insulin – on top of the equally high cost of her long-acting basal insulin.

Being on Medicare, she had been turned away from any financial assistance programs the insulin-makers have in place. She was clearly just completely lost, unsure of what to do. She was on her last insulin pen and didn’t know how she would survive once that ran out.

“Hold on, stay here,” I said, holding up my finger for emphasis. “I’m not leaving, I’ll be right back!”

It was a crazy yet fortunate coincidence that just 20 minutes earlier, I had given a Frio case full of insulin to the nurse practitioner. It contained four unopened, unexpired bottles of fast-acting insulin that I intended to donate to the doctor's office so they could distribute it to patients in need.

This came about because last year my high-deductible insurance plan put me in a similar bind -- I wasn’t able to afford the $700+ it was going to cost me for one month’s supply (three bottles of fast-acting insulin). When I vented in frustration to a friend, he offered to help me out by giving me several unopened insulin vials.

Between samples from my doctor's office and that D-peep’s effort last year, as well as my own personal trips to Canada to buy actual affordable insulin(!), it either saved my life or saved me from a potential bankruptcy brought on by insanely high medication prices.

When my insurance coverage changed more recently, my new insurer forced me to switch to a competing brand of insulin (despite what my doctor had prescribed). Ugh, Non-Medical Switching that just compounds these access and affordability woes! I complied, in the interest of doing my part to contain costs. As a result, the other insulin went unused for the past few months.

I know how lucky I had been to find that help, and how lucky I am now that I can afford my insulin. That's why I wanted to Pay It Forward by giving the extra insulin to my doctor's office to pass on to a patient in need.

And there she was... the lady in the parking lot, who took the Frio case gratefully, cried, and gave me a hug.

I shared my story of where this insulin had come from, and how important I felt it was to #PayItForward.

I found it reassuring to have our endo standing right there, making sure that all was OK with this “off the books” insulin hand-off. That way, I could be sure I wasn't passing on a dangerous medication to someone without any frame of reference.

We all shook our heads about the entire situation -- the sad state of affairs we’re forced to deal with.

As it turns out, a week or so later, I found myself switching insulin once again, and having leftovers of my original long-acting insulin stocked up in the fridge, the same brand this woman in need used. So once again I was able to pass on the surplus -- an extra box of insulin pens I wasn't going to use. Again, the timing just worked out to pay it forward.

Sidestepping a Broken Healthcare System

Patients donating and sharing prescription meds is not a new phenom. It’s been happening for years in reaction to the spiraling costs that put disease care essentials beyond affordability for so many of us.

I shudder to think about a Black Market for medications that are life-sustaining, and how some folks could try to exploit that underground economy.

Meanwhile, many patients are scraping to get hold of samples from doctors' offices, turning to friends and family with crowdfunding campaigns, and relying on D-meetups and supply exchanges via Facebook and other social media to get their hands on the essentials they need. I've even heard of PWDs meeting up after-hours in dark parking lots to exchange syringes and supplies when an emergency pump failure happens and the patients in question have no backup supplies on hand because they couldn't afford them.

You name it, that’s the reality.

It’s outrageous, especially in such a wealthy country, and shows just how messed up our system is. Those who make this life-sustaining medication are not doing their job in ensuring access, but instead allowing it to become just another source of big corporate profits.

Yes, Big Insulin, I’m talking about you – Lilly, Novo, and Sanofi. But despite pleas for you to do something about it, there are no signs of change. You offer assistance programs that seem pretty on their face, but in reality they are limited to "those eligible" and they don't offer the real long-term substance for people who need it the most.

It’s also on you, Health Insurance Companies and formulary-setting Pharmacy Benefit Managers. You all pull the strings in such a way that hurts us, cutting off access to the very medication that keeps us alive.

You claim to be doing good, but in the end people with diabetes who need insulin to stay alive can't afford it, and we're left out in the cold because you simply can't find a way to reduce these medical costs for us.

People in extreme circumstances resort to extreme measures, like this poor senior lady practically begging for insulin in a parking lot.

If you Powers That Be don't start recognizing the human cost of your actions, we promise that will eventually come back to haunt your bottom line.

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Originally published at DiabetesMine in September 2016

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