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Today, insulin is often scarce in low-income countries , or too expensive for many people to afford in the United States. Without insulin, people with type 1 diabetes suffer a condition called Diabetic Ketoacidosis (DKA). If left untreated, people die quickly and usually alone. The tragic loss of life from DKA can be prevented.  If insulin became freely accessible and affordable, lives could be saved.  Insulin insecurity has become the new plight of people with type 1 diabetes.  Insulin insecurity is also grossly inhumane in our modern world.

Thanks to social media, especially Twitter and the hashtag #insulin4all, politicians, the media, researchers, opinion leaders, doctors, and more all have their eyes on the insulin crisis. Drug makers Sanofi, Eli Lilly, and Novo Nordisk are huge global enterprises, who control the vast majority of the $27 billion global insulin market. Together, they have raised insulin prices by 600 percent over the past 15 years.

What may not be as clear to the public is that type 1 diabetes is the less prevalent type of diabetes. In the US, 30 million people live with type 2 diabetes which can be prevented or reversed when detected early. About 1.25 million people live with type 1 diabetes in the US. It is a life-long condition dependent exclusively on insulin for survival. Type 1 diabetes also differs in that there is no known cause and there is no cure.

It’s obvious when people get confused:  “Just eat less!”, one troller says.  “How hard can it be?”,  says another. “Why should your insulin be free? Go on a diet!”, and so on. One doctor wrote on her twitter feed that a patient’s lack of  compliance must have been responsible for his early death, not insulin affordability.  “He could have called his doctor.” Misrepresentations are harmful, insensitive and ignorant.

It’s important for all people to become more aware of death by DKA and the problem with rationing.  Rationing doesn’t work, and the tragic loss of life should not be tolerated today, 98 years after the discovery of insulin.

What happens to people with type 1 diabetes when they can’t access insulin at all?

Without injectable insulin, DKA occurs in type 1 diabetes and it only takes a few hours, especially in children. When blood glucose (BG) is too high for too long, the body starts breaking down fat at a rate that is much too fast. The liver processes the fat into a fuel called ketones, and causes the blood to become acidic, which is toxic. BGs are harder to normalize with routine insulin injections during DKA. Hospitalization becomes essential for survival. Symptoms include sunken eyes, rapid breathing, headache, muscle aches, severe dehydration, weak peripheral pulses, nausea, stomach pain and cramping, vomiting, semi or unconsciousness, cerebral edema, coma and death.  DKA is a horrendously painful way to die.

It has been well documented that lack of health insurance and lower incomes are associated with higher rates of DKA.  It is also important to point out that the American Diabetes Association Guidelines state that a primary cause of DKA includes “psychosocial reasons for insulin omission” and “these reasons need to be identified.” While this may be the cause in a few cases, today in the age of insulin insecurity, we cannot allow any advocacy organization or other to blame the person with diabetes for mental instability, or noncompliance rather than what is really happening: financial constraints and lack of access. It is unjust, and indefensible. Perhaps the ADA will consider updating their guidelines to include high cost of insulin and rationing as cause of DKA and early mortality.

High BGs starve the body which is why people lose weight. Cells are not being fed the glucose needed. Not eating food doesn’t change the problem.

Why doesn’t rationing insulin work?

In a clinical study, researchers found that roughly 30% of people with diabetes ration insulin or every 1 in 4. Studies over the last 20 years have shown that the high prices are associated with rationing. Rationing insulin increases life-threatening diabetes-related complications, such as DKA, but also increases risks for blindness (retinopathy), kidney failure, and neuropathies such as loss of feeling in the feet and hands.

Living with higher than normal but what may appear to be manageable blood glucose is not sustainable. (>9% HbA1c) Eventually things fall apart. It’s not hard to imagine a person rationing food alongside insulin. “I just won’t eat.” Again, without adequate insulin, this is a failed attempt at survival without medication. Starving was a strategy utilized before the discovery of insulin and no one survived. This horrible rational is undone by the fact that high BGs starve the body which is why people lose weight. Cells are not being fed the glucose needed. Not eating food doesn’t change the problem. Sustained high blood glucose leads to infections, and ketones in the blood or DKA. Even without food, background insulin is essential to manage glucose output from the liver, counter-regulatory hormones, stress and other factors.

For the freedom of people with diabetes

In 1923, insulin discoverers — Banting, Best, and Collip — were awarded the American patents for insulin which they sold to the University of Toronto for $1.00 each. These scientists saw a world where people dependent upon insulin would never have to worry about survival. The University of Toronto allowed Eli Lilly to produce insulin in exchange for a one year distribution monopoly. (Two cents a unit!)

Today people with type 1 diabetes in many countries are not only fighting for their lives with a very difficult condition, but also must contend with extreme and unreasonable costs for what should be affordable insulin. This has led directly to rationing and early death from DKA. DKA is a preventable complication of type 1 diabetes. Insulin is the cure for DKA. It is with hope that continued pressure on insulin manufacturers from the diabetes community and all stakeholders will provide a resolution to this terrible, inhumane situation.


Elizabeth Snouffer is Editor of Diabetes Voice. She nearly lost her life to DKA that was diagnosed with type 1 diabetes and a blood glucose value greater than 1600 mg/dL (89 mmol/L) 42 years ago.

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  • Sean Ressegger

    August 11, 2020 at 8:17 am

    Agreed. I’m a type one in the US and I’ve had to deal with these issues at times in the past as has my sister whose also a type one. Now thankfully medi-cal is covering my insulin but that’s actually led to a new problem. I was originally on Apidra insulin which is a rapid insulin, and it was chosen for me by my Dr as it’s what fits me best and I thrived on it. But now medical will only cover Admelog insulin which is only a fast insulin and as such is not a good match for me and causes nothing but issues, as after meals my blood glucose surges before it kicks in and wears off before the Admelog does. So first my blood glucose goes way up then few hours later crashes and this is multiple times a day. But I’ve been unable to get anyone with medical to listen.

  • graham

    October 1, 2019 at 11:20 pm

    As a newly diagnosed type 1, I was shocked to hear that insulin affordability in the first world is even an issue!! Here in Ireland, insulin and associated medicines are absolutely free once diagnosed. This is what we pay taxes for!! This is what a humane society is.