Out of Pocket Expenses (OoPEs) for T1D

Rationing insulin, anyone? "It is not a choice. It is literally life or death."

Apr 22, 2025

Diabetes costs a lot.

I am reminded by this fact every time I visit the pharmacy to buy what I need to survive.

Should people with T1D be expected to pay for their treatment? Should they have to foot the bill for insulin—a substance they need to survive—and pay for blood sugar monitoring equipment? What about the pump or continuous glucose monitors (CGMs)?

Out of Pocket Highs & Lows

According to research done by T1International’s global network back in 20221, out of pocket expenses (OoPEs) were the highest in four countries:

The United States
Panama
Canada
India

and the lowest in:

The United Kingdom
Germany
Sweden.

Having partial healthcare coverage meant the highest OoPEs, followed by people with no healthcare coverage at all. For over 50% of study participants, the COVID-19 pandemic “negatively impacted access and/or affordability of insulin and/or supplies.”

Rationing Insulin

Across the globe, some 19.5% reported insulin rationing and 36.6% reported rationing glucose monitoring supplies. This was tied to limiting life choices and mental health impacts when analyzing open-ended responses qualitatively.

What did people with diabetes say?

Well, that’s why Time in Range exists! I’m so glad you asked!

Affordable access to insulin and diabetes supplies, of course. For all.

This is actually a win-win situation for governments, as it results in cost-saving potential:

“Make CGM access available for everyone! It will save you money in healthcare hospital visits for people with T1D.” (person with T1D, partial healthcare coverage, Canada)

Sacrificing Basic Needs

It was common for some participants to sacrifice other basic needs because of high diabetes-related OoPEs:

“Stop making me choose between buying diabetes supplies and food.” (person with T1D, partial healthcare coverage, US)

All this inequality and inability to afford treatment can lead to fear, stress and anxiety:

“There is also the emotional cost of the stress of worrying if supplies will last or arrive in time.” (person with T1D, partial healthcare coverage, US)

The Burden of Insurance

Insurance is seen in the US by many participants as extremely expensive and burdensome:

“40% of my monthly paycheck goes towards insurance and I still have copays and [out-of-pocket] costs.” (person with T1D, partial healthcare coverage, US)
“Why do I have to plead, negotiate, yell, follow up, and chase down the drugs and supplies [I] need to stay alive every month?” (person with T1D, partial healthcare coverage, US)

Human Rights

Is access and provision of insulin a human right? I would argue it is. According to some participants:

“Insulin is a basic human right. I know I’m privileged, and I have never known the pain of rationing, but I will keep fighting for our right to live as long as it takes.” (person with T1D, partial healthcare coverage, US)
“It is not a choice. It is literally life or death.” (person with T1D, partial healthcare coverage, Canada)
“… no one with diabetes should ever have to choose between taking their life saving medication, feeding their families or paying rent.” (person with T1D, partial healthcare coverage, Canada)

All in all, the study highlighted the very real burden that people with T1D face without healthcare coverage—if there is a financial burden, there is an associated rationing of insulin and glucose monitoring supplies.

Surprisingly, Canada, unlike other countries with universal healthcare, still lacks universal pharmacare, which leads to higher medication costs for individuals and rationing of supplies. As well, the US is one of the richest countries in the world, yet US participants report the highest monthly OoPEs.

In other words, we still have a long way to go.

Thank you for reading this vital post! You can share this with someone who has diabetes and maybe they’ll subscribe to Time in Range!

By the way, I’m editing the book. Now if I could only find a publisher …

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