The diagnosis of type 1 diabetes (previously known as juvenile diabetes) used to be a death sentence. Literally. Prior to 1923, the onset of type 1 diabetes meant death anywhere within a few days to a few months as there was no cure and no treatment. One doctor discovered he could prolong the lives of children with the disease up to a year by putting them on a starvation diet. Yes, starving them. Wards of 50+ children lying in comas from diabetic ketoacidosis (DKA) were common. But the discovery of insulin in the ’20s, and then the refinement of it to its current standards in the 1980s (yes, you read that correctly – modern insulin was not available until the 1980s), has allowed countless millions to live long, fulfilling lives. Albeit with the inconvenience for most of finger pricks and needle sticks.
Maintaining Blood Glucose Levels
Typically, a type 1 pricks a finger between 7 and 9 times a day to test their Blood Glucose (BG) levels, and get a fast-acting insulin shot around 6 times a day in addition to their one or more long-acting insulin dose(s). If a type 1 doesn’t test their BG on a regular basis, they could go too high or too low. According to the Juvenile Diabetes Research Foundation, “Severely low blood-sugar levels can lead to hypoglycemic seizures, unconsciousness, coma, and death if left untreated. Regular high blood-sugar levels over time can lead to complications including blindness, heart disease, kidney failure, and amputation.
Breaking the Bank
The cost of insulin has gone up 200% in the past 4 years. Why? Unfortunately, nobody has a good answer to that. According to a report by the Health Care Cost Institute, the price of a 100 ml vial of insulin doubled between 2012 and 2016 and they continue to rise while pharmaceutical companies continue to show consistently huge profits. This drug has been around for almost 100 years, and the formula has changed very little in that time. There does not seem to be a good reason for the price other than “because they can.”
Imagine depending on this drug every single day of your life, but you don’t have insurance, or you have inadequate insurance. You now have to pay for insulin and all the necessary supplies that go with it out of pocket or with high deductibles because NOT having insulin is not an option. And while some manufacturers offer coupons and discounts to help people in financial hardship, these programs are often short-term.
“Insulin Belongs to the World…”
It should be noted the three original American insulin patents were sold to the University of Toronto for $1 each. The scientist who discovered insulin, a researcher at the University, wanted to be sure it would be affordable for everyone who relies on it. In 1923, when asked why he sold the patents so cheaply, Dr. Banting said, “Insulin belongs to the world, not to me.” It should be noted insulin is available over-the-counter in Canada, meaning you do not need a prescription for it. It is also significantly less expensive; for example, website PharmacyChecker.com noted in a blog post in 2017 that “The price in Canada for a three-month supply of Lantus Solostar (3 ml) is currently around $447.00 while the average retail price in the U.S. is a staggering $1,160.39.” Is it any wonder Americans are gassing up the car and driving north for their prescriptions?
It’s Not About Diet Choices
You may think a diabetic can simply change their eating habits to reduce their dependence on insulin. Stay away from sugar and carbohydrates. While this is may be true for many type 2 diabetics, type 1 is completely different. A person with type 1 has to have prescription insulin every day to stay alive. Their pancreas does not produce any insulin. None. Any glucose within the body is therefore not used properly by the cells to produce energy. This can lead to a condition known as Diabetic Ketoacidosis (DKA), which can lead to the kidneys shutting down, coma, and ultimately death.
Everyone Needs Insulin
So, let’s assume a type 1 goes on a starvation diet in an effort to help ration their insulin because it has become too costly. The liver believes the body is in starvation mode and therefore produces glucose. This actually happens for most people, and it’s called the “dawn effect” – you’ve been asleep for around 8 hours, not consuming any energy-producing foods, and your body needs a kick-start to get out of bed and begin the instinctual search for food, so hormones within the liver give you that little glucose boost. This happens in diabetics as well. However, they don’t have the insulin which helps cells convert that glucose into energy. So if they go for long periods of time without eating anything, their bodies are still producing sugars which are entering the bloodstream and damaging the kidneys which then have to work overtime to dilute the sugars.
Go to Bed Hoping to Wake Up
As you can imagine, the routine of these patients involves lots of other products besides just insulin. They have to purchase one-time-use items like syringes or insulin pen tips, blood testing supplies, and emergency glucose items. There have been reports of type 1s reusing syringes and pen tips. These are not items designed to be re-used and it is, therefore, dangerous to engage in this type of rationing. Many also do not follow their prescribed ratios, cutting back to dangerous levels in order to stretch a vial, or using expired insulin so none is “wasted”. A recent federal worker who had been furloughed during the recent government shutdown, and who is diabetic, told CNN’s Anderson Cooper ‘she resorted to rationing her insulin medication because “the thought of having more debt was scarier than the thought of dying” in her sleep.’
US Pharmaceutical companies need to provide a solid explanation for keeping this essential and life-saving medication priced out of reach for many of those struggling with a condition over which they had no choice. Type 1 diabetics have enough tough choices to make every day. Whether or not they pay for their medication or pay their other bills shouldn’t have to be one of them.