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Why Bernie Sanders went insulin shopping in Canada with a mom of 8

How did the cost of a common drug become a moral issue that is front and center at the Democratic presidential debate?

Democratic presidential candidate Sen. Bernie Sanders, I-Vt., holds an insulin vial as he addresses the media outside the Olde Walkersville Pharmacy, Sunday, July 28, 2019, in Windsor, Ontario. Sanders accompanied about a dozen people who purchased the dr
Democratic presidential candidate Sen. Bernie Sanders, I-Vt., holds an insulin vial as he addresses the media outside the Olde Walkersville Pharmacy, Sunday, July 28, 2019, in Windsor, Ontario. Sanders accompanied about a dozen people who purchased the drug in Canada because it's cheaper than in the United States.
Carlos Osorio, Associated Press

SALT LAKE CITY — A vial of insulin costs $32 in Canada and $340 in the U.S., and for some people with diabetes, a vial lasts about five days.

That's why some American moms were going to Canada to buy insulin long before before presidential candidate and Vermont Sen. Bernie Sanders accompanied them on Sunday — and why the cost of health care stands to loom large in this week's presidential debates.

In Detroit for Tuesday's debate, the Sanders campaign chartered a bus that took about a dozen people to a pharmacy in Ontario. It was only about a 20-minute trip, but on the other side of the Detroit-Windsor Tunnel, the price of insulin fell to about one-tenth of what people pay in the U.S., Kathleen Gray of the Detroit Free Press reported.

For parents like Rachel Lockwood, a mother of eight in Greenville, Michigan, making the trip is necessary. Three of Lockwood's children — ages 16, 12 and 7 — have Type 1 diabetes and need insulin to survive, the Free Press reported.

"Because our youngest was just diagnosed five months ago, we had been sharing the insulin between the two children, but when we had a third diagnosed with Type 1, we couldn't stretch it anymore," Lockwood said.

For Sanders, the cost of insulin is emblematic of a system in which pharmaceutical companies reap excessive profits at the expense of the sick. One study found that it costs drug manufacturers between $2.28 and $3.42 to produce a vial of insulin. Yet, according to the nonprofit Health Care Cost Institute, Americans with Type 1 diabetes spent, on average, about $5,700 on insulin in 2016, up from $2,864 in 2012.

Another indicator of insulin's spiraling cost comes from Medicare Part D, which spent $13.3 billion on insulin in 2017, compared to $1.4 billion in 2007, according to the Kaiser Family Foundation. While the number of people needing insulin also increased during those years, the costs were disproportionate: The number of people needing insulin rose 86% while the cost of insulin increased 840%.

How much a person spends on insulin, of course, depends largely on whether he or she has insurance, the amount of the deductible and what kind of plan it is. Some insurance companies and pharmacies, to include Cigna-owned Express Scripts, have recently offered discounts and caps on insulin prices.

But even with insurance, many people with diabetes are reporting that they're struggling to keep up with the cost, and some are using less than prescribed because they can't afford more.

Buying insulin in Canada, however, isn't an option for all Americans with diabetes, and in some cases, it's illegal. Moreover, some Canadians are grumbling about "pharmaceutical tourists" and saying they can't meet the needs of their own citizens if they're selling drugs to their neighbors from the south.

Meanwhile, Sanders heads into Tuesday night's debate with Massachusetts Sen. Elizabeth Warren with stories to tell about the struggles of families who have seen the cost of insulin more than double in recent years.

And the cost of insulin isn't just an issue for people with diabetes, because the price affects taxpayers, as well. Bram Sable-Smith of NPR reported in March about a Denver woman whose insulin cost her $8.50 because taxpayers paid $280.51 of the prescription in the form of Medicare and Social Security disability benefits.

"When it's taxpayer money paying for medication for someone like me, it makes it a national issue, not just a diabetic issue," Erin Gilmer, the Denver woman, said.

How insulin works

According to American Diabetes Association, more than 30 million Americans have diabetes, which occurs when blood sugar levels are too high.

Normally, the pancreas secretes insulin, which helps regulate glucose in the bloodstream, but in people with Type 1 diabetes, the pancreas no longer makes insulin.

Type 1 diabetes usually occurs in children and young adults, although it does occur in adulthood, according to the National Institutes of Health. Once diagnosed, people with Type 1 diabetes have to take synthetic insulin for the rest of their life, either using a needle and syringe, an insulin pump or an insulin pen.

Some people with Type 2 diabetes also need synthetic insulin, but it's primarily a treatment for Type 1, which more than 1 million Americans have, including about 18,000 under the age of 18.

Before insulin was discovered, "the life expectancy of children with diabetes mellitus was short and the prognosis for the adult onset diabetes was very poor," wrote Celeste Quianzone and Dr. Issam Cheikh in their academic paper "History of Insulin."

It was a Canadian, Frederick Banting, who discovered insulin in 1923, but he did not want credit, believing that doctors shouldn't profit for anything that would save lives, Julia Belluz reportedfor Vox.

"Banting’s co-inventors, James Collip and Charles Best, sold the insulin patent to the University of Toronto for a mere $1. They wanted everyone who needed their medication to be able to afford it," Belluz wrote in May, after Colorado became the first state to pass a law saying that people wouldn't have to pay more than a $100 copay per month, no matter how much insulin they use.

Because Colorado's law doesn't limit what drug manufacturers can charge for insulin, insurance companies will likely assume the cost, according to Anna Staver reporting for the Denver Post.

The cap only applies to people with health insurance, however, and Elizabeth Pfiester, executive director of the patient group T1International, said in Vox, "Any measure that helps only a portion of the population through opaque deals between the players responsible for this crisis is not a solution."

Desperate measures

The outrage over insulin pricing is not only because of Banting's belief that "it belongs to the world," but because of the relatively low cost to produce it.

"Anyone with Type 1 diabetes should be able to buy insulin for under $100 per year, including the long-acting forms," Andrew Hill, a co-author of the study and senior visiting research fellow at the University of Liverpool, told Business Insider.

"Pharmaceutical companies cannot justify charging governments $532 per person per year in the U.K. and $1,251 in the U.S., let alone similar amounts in low- and middle-income countries," Hill said.

For their part, the manufacturers blame the vagaries of "health systems" in various countries and note that they have programs to help people obtain the drugs they need. Eli Lilly and Co., for example, announced in March that it was releasing a generic version of its insulin for half-price: $137.35 per vial.

Dr. Irl Hirsch, a professor of medicine at the University of Washington School of Medicine, wrote in 2018 for STAT that after adjusting for inflation, insulin should cost about $16.50 per vial today.

Hirsch, who was diagnosed with Type 1 diabetes at age 6, has said that pharmacy benefit managers share some of the blame, but he says the main reason for the cost is that the U.S. doesn't have price controls.

"Other developed nations do not allow this. Outside of the U.S., insulin prices are negotiated by the government, not by private payers as happens here," he wrote.

The inflated prices have led some people to risk their lives in order to save money, KSL.com reported earlier this year.

In a report originating with CNN, Utah high school senior Dillon Hooley said that he secretly cut back on his insulin use by one-third when he learned that his parents were having problems paying for it.

They had to pay the first $5,000 before they met the deductible, and even then, had to pay $800 a month, compared to $60 a month they'd been paying under a previous insurance plan.

The change caused Hooley's blood-sugar levels, which are supposed to be between 130 and 150, to jump to 300, Elizabeth Cohen and John Bonifield reported. When his parents found out, his father changed jobs to get a better insurance plan. They now pay $160 a month.

Others have reportedly died because they couldn't afford insulin.

In Minnesota, Nicole Smith-Holt, a mother of four, became an activist for affordable insulin after her 26-year-old son died because he couldn't afford the $1,300 prescription.

As reported on PBS NewsHour, Alec Holt lost health insurance through his parents when he turned 26 and his employer didn't offer health insurance. His mother tried to help him find one, but she said, "The lowest plan that we found was $450 a month with a $7,600 deductible. That’s really not affordable."

After his girlfriend found Alec unresponsive, the cause of death was determined to be diabetic ketoacidosis, which happens when acid accumulates in the bloodstream.

"DKA can occur when diabetics ration their insulin. A study found 1 in 4 do so because of cost," the PBS report said.

Canada isn't the answer

Whatever the solution to insulin prices in America, it shouldn't include Canada, some Canadians said as Sanders was making the trip to the Ontario pharmacy.

As reported by The Star, a daily newspaper in Toronto, 15 groups representing patients, health professionals, hospitals and pharmacists complained about "pharmaceutical tourists" in a letter to Health Minister Ginette Petitpas Taylor.

“The Canadian medicine supply is not sufficient to support both Canadian and U.S. consumers. The supply simply does not, and will not, exist within Canada to meet such demands," the letter said.

Moreover, buying drugs in Canada is officially illegal, although the U.S. generally looks the other way when it involves small amounts of drugs that are legal here.

According to the official policy of the Food and Drug Administration, if the person buying the drug can prove that it's for their own personal use and can provide the name of the prescribing doctor, he or she can typically obtain and bring home a three-month's supply.

But getting to Canada from Detroit or Minneapolis is one thing; getting there from Salt Lake City or Richmond, Virginia, is quite another.

This is why, if you're playing Debate Bingo this week, hope for a card that says "Price of insulin mentioned." The topic will likely be front and center throughout the campaign since two-thirds of Americans believe health care costs are the biggest issue facing the country today, according to Pew Research Center.