Until the beginning of the 20th century, a diagnosis of diabetes – which are actually a range of diseases – was disastrous.

“There are horror stories,” says John Winters, a writer and teacher who was diagnosed with type 1 diabetes as a young teenager. “People starved themselves,” often on doctor’s orders, but there was no cure or real cure. The prognosis was almost inevitably for early death.

But 100 years ago this month, a doctor, medical student, and University of Toronto researcher discovered they could isolate a hormone called insulin, produced in the pancreas, which allows the body to transform sugar. As the American Diabetes Association reports, the following year, a dying teenager in a Toronto hospital was injected with insulin. The result was almost miraculous as the doctors saw her blood sugar drop to near normal.

Within a few years, insulin – initially extracted from animals and, much later, mass-produced artificially – was saving the lives of patients who would otherwise have faced a bleak future – and greatly shortened.

Winters simply says of insulin, “That’s life.

But today, many of those patients who depend on this century-old scientific discovery to keep their condition under control face a new threat, a staggering increase in the cost of insulin doses and the resulting surge in their quota. insurance. According to the Diabetes Association, the average price of insulin almost tripled between 2002 and 2013 and then almost doubled from 2012 to 2016. This is a development that worries some and scandalizes others.

As described by the CDC, diabetes is a chronic disease that affects the way the body converts food into energy. “There are three main types of diabetes: type 1 diabetes, type 2 diabetes and gestational diabetes (diabetes during pregnancy)” which have independent causes. In addition to the 34.2 million Americans with diabetes, another 88 million are prediabetic or at risk of developing the disease. In diabetes, the body either fails to produce enough insulin or processes it, which means that the sugar cannot be used by cells for energy. When blood sugar, also known as glucose, stays at high levels, it can lead to a variety of complications, including heart, kidney, and vision problems.

Between 90% and 95% of people with diabetes have what is called type 2, a form of the disease that is often treated with changes in lifestyle, diet, exercise, and oral medications. According to the Mayo Clinic, insulin was once a last resort for type 2 patients, but can now be prescribed earlier to stem the progression of the disease.

“Before the discovery of insulin in 1921, the lifespan of young children with diabetes was only one to two years. Following the discovery of insulin, this rose to 20 to 30 years. Now people with childhood diabetes or type 1 diabetes have an almost normal lifespan, ”notes Dr. George King, scientific director of the Joslin Diabetes Center in Boston, in an email to the Sun Chronicle.

He points out, however, that in 20-30% of people with type 2 diabetes, insulin is still needed because their body has lost the ability to produce enough insulin to maintain or regulate their fuel for proper organ function. vital organs such as the liver, pancreas, heart, muscles, brain and other organs. Since there are over 30 million people in the United States with type 2, 20-30% equals 9 million people. “

For these patients, insulin is literally the difference between life and death.

Winters, 58, from Foxboro (and former Sun Chronicle editor) who now lives in Pawtucket, was diagnosed with type 1 diabetes at age 13. He spent a few days at Children’s Floating Hospital in Boston learning how to inject insulin.

Fearing that he would be teased, he did not tell his friends about his diagnosis and the two daily injections he needed to take. And as an older rebellious teenager, he says, he neglected part of that routine. “I didn’t take care of myself and complications happened. In 2002, I had a kidney transplant because I damaged my kidneys.

Today, Winters uses an insulin pump to keep his glucose levels stable. It alerts her if it is too high or too low. He also tests his blood 10 times a day and makes sure to manage his diet and exercise. He sees a specialist, an endocrinologist, every three months.

“It’s a lot of work to manage the disease, but it has to be done,” he says.

Winters’ wife Karen Callen, a native of Brockton and a former Norton resident, also suffers from type 1 diabetes.

For Eric Wuesthoff, 24, from North Attleboro, diabetes is always “in the background, and sometimes in the foreground.”

Diagnosed with type 1 at the age of 12, he also uses an insulin pump to control his blood sugar.

“When I was first diagnosed, I was self-administering 4-6 injections per day. With my insulin pump, I only have to change my infusion every few days. I get insulin continuously throughout the day as well as higher doses before eating. I have to track how many carbs I am consuming to properly calculate my insulin dose, ”he said in an email response to questions from The Sun Chronicle.

As with Winters, “Simply put, insulin kept me alive …” he writes. “I am very grateful to live in a time and place with a health care infrastructure where I can access insulin in my daily life. Combined with tools like my insulin pump, it means I can live a relatively unencumbered day-to-day life.

A graduate of UMass-Amherst, who will soon be starting graduate studies at Rice University, Wuesthoff is an environmentalist and points out that he has done “a lot of fieldwork in remote places, including in countries of the South where there is less access to insulin and emergency medical care. To do this kind of work, I had to closely monitor the condition of my body, make contingency plans in case of emergency and argue with my insurance company to get enough supplies for long trips.

Even with his illness, Wuesthoff knows how lucky he is that a century ago two Canadian doctors worked on a breakthrough. But he is also concerned.

“I can live from day to day much like my able-bodied friends thanks to insulin,” he said. “The discovery and distribution of insulin has been a lifeline for me and millions of people with diabetes like me and people shouldn’t have to risk their lives by rationing this drug because they can’t afford it. that the drug companies are asking for. “

The rising cost of insulin, he says, is “exasperating.” He writes: “It is a drug that improves the lives of millions of people every day; in my case, I couldn’t survive without it. That a pharmaceutical company could raise the prices of something so crucial is inexcusable, the government’s inadequate response to this growing crisis is also so frustrating. “

Winters notes that when he was first diagnosed, the cost of a vial of insulin was around $ 11. Now he says even with good insurance he has a $ 75 copay for a three month supply. “Without insurance, I would pay over $ 570 per month for my insulin. “

Wuesthoff shares these concerns.

“My worry about paying for my insulin, even with health insurance coverage, almost always comes to mind. People with diabetes who cannot afford the insulin they need will often ration it, sometimes resulting in hospitalization or death.

Insulin producers blamed the high costs on insurance companies and their policies as well as the cost of innovation. Government regulators, however, cite the business practices of the drug companies that sell it and cited a lack of incentives to lower the prices of a 100-year-old drug. Meanwhile, several states have capped insulin costs in recent years as new generic versions begin to hit the market.

“The cost of insulin, like other prescription drugs, is very high and the price of insulin is much higher in the United States than in any other country like Canada,” wrote King of the Joslin Center. .

He points out that since people with diabetes take many other drugs and devices needed to deliver their drugs and insulin, the cost of the drugs can easily reach over $ 1,000 per month.

“Since insulin, and even the ‘new’ insulins are over 20 years old, their cost should not go up but should go down. It is difficult to explain why the cost of insulin is two to three times higher in this country than in any other country in the world, ”he wrote.

Even with readily available insulin, people with diabetes face a range of health risks. It is still the seventh leading cause of death in the United States, according to the CDC.

According to US News and World Report, about 40% of COVID-19 deaths in the United States were in diabetics, a “really quite worrying” statistic that should prompt people with the disease to get vaccinated, Dr. Robert Gabbay, Chief. American Diabetes Association scientific and medical officer.

For Winters, that meant extra precautions.

“I haven’t been anywhere” during the worst of the pandemic, he says. In addition to the immunosuppressive drugs he needs because of his kidney transplant, “the vaccine probably didn’t work very well on me. I’ll be wearing masks for the next decade, ”he joked.

But he’s still grateful to be living today and not a century ago. He said he was not aware of the 100th anniversary of the discovery of insulin until recently. “I thought I needed to memorize the names of these three people,” said Dr. Frederick Banting, medical student Charles Best and Professor John Macleod. “Without them, I wouldn’t have seen my 15th birthday.”