Skyrocketing cost of insulin causes some desperate diabetics to ration

Caroline Yang At first, it seemed like the stomach flu. Weeks before his 24th birthday in May 2015, Alec Raeshawn Smith was overcome by troubling symptoms. His body ached, his stomach hurt and he wasn’t sleeping well. Laine Lu, a co-worker at his restaurant job, urged him to see a doctor. "This is not normal," she recalls telling him. "Go get checked out."

His mother, Nicole Smith-Holt, worried too. He called her when he decided to go to a health clinic near Minneapolis. He said, "Seriously, Mom, I think something is really wrong with me."

The diagnosis was surprising: Type 1 diabetes. Alec’s blood sugar levels were nearly twice the healthy limit. His family didn’t have a history of diabetes, and lanky, 6-foot-3 Alec looked like the picture of health. At 23, he seemed too old for Type 1 diabetes, once known as juvenile diabetes because it often strikes children. But as Alec discovered, Type 1 diabetes is an autoimmune response that can appear at any age. It is not preventable, and there is no known cure.

At the clinic, a nurse practitioner discussed the potential complications of the chronic disease, including blindness, nerve damage, and kidney and heart problems, according to medical records. Alec came home with prescriptions for two kinds of insulin: One was long-acting; the other gave him short bursts before meals. He wrote on Facebook: "Today a lot has changed. . . . I would never wish this upon anybody. So whoever reads this take care of yourself."

Even for his older sister, Brittany Smith, who is a nurse, the learning curve about Type 1 diabetes was steep. "I didn’t really have a handle on it," she says. Most of her diabetic patients had the far more common Type 2. Both types involve an imbalance of insulin, a hormone that helps regulate blood glucose levels. For Type 1 diabetics, the body produces little to no insulin. In Type 2, generally, the body has become resistant to insulin’s effects. Not all Type 2 diabetics take insulin, but all Type 1 diabetics do. Alec would need a steady supply for the rest of his life.

What had been a carefree 20-something existence was now dominated by insulin injections, timing of doses and taking a blood sample four times a day to measure glucose levels. "I know he’d get frustrated," Nicole says. Within three months, though, Alec had gotten his blood sugar under control. He maintained healthy levels as that first year wore on. He began dating Laine and worked as a manager at the restaurant where they’d met. Eventually, he moved out of his parents’ home and into his own apartment on a tree-lined street near downtown Minneapolis.

In 2017, as his 26th birthday neared, his mother had a new worry: He would no longer be covered by her health insurance through her job in the financial aid department of a community college. Nicole paid about $100 per biweekly paycheck for a family plan, and it had not cost extra to include Alec. With it, she says, he initially had been paying about $200 to $300 a month out-of-pocket for his diabetic supplies and prescriptions, an amount he could just afford. The restaurant did not offer insurance, and his $35,000 salary put him above the income limit for Medicaid in Minnesota.

His mother helped him look for a health plan on the marketplace set up by the Affordable Care Act, but his options were expensive. To keep going to the same doctors, she says, he was looking at paying about $450 monthly, in addition to a high deductible of more than $7,000, which would mean months of paying out-of-pocket for most of his medical care. He opted to go without insurance, forgoing that expense to focus on paying for his insulin and supplies until he could find a better option.

What Alec soon learned was just how much his insulin would end up costing: more than $1,000 a month. The price of insulin – once modest – has skyrocketed in recent years, making the lifesaving medication a significant, even burdensome, expense, especially for the uninsured and underinsured. The costs are so heavy that they have driven some patients to ration their supplies of the drug in a dangerous gamble with life-threatening consequences.

At the time Alec discussed skipping insurance coverage, he told his mother, "It can’t be that bad." Within a month of going off her policy, he would be dead.

Insulin, in its various manufactured forms, has been used to treat diabetes for almost a century, since Canadian researchers isolated the hormone in a lab in 1921. Before their discovery, what we now know as Type 1 diabetes was fatal. Even after being put on starvation diets, patients often lived no more than a few years. The researchers who transformed diabetes treatment won the Nobel Prize, and they sold their patent to the University of Toronto for a total of $3. "Above all, these were discoverers who were trying to do a great humanitarian thing, and they hoped their discovery was a kind of gift to humanity," historian Michael Bliss told The Washington Post in 2016.

Soon, though, insulin became a commercial enterprise. By 1923, the American pharmaceutical company Eli Lilly was manufacturing enough insulin for diabetics across North America. For decades, manufacturers improved formulas, first using animal parts, then producing human insulin using bacteria and recombinant DNA. The 1990s saw the advent of insulin analogs, synthetic drugs made to better mimic the body’s own insulin production.

Today, critics argue that the price of insulin has far outpaced any innovations. In the past decade alone, U.S. insulin list prices have tripled, according to an analysis of data from IBM Watson Health. In 1996, when Eli Lilly debuted its Humalog brand of insulin, the list price of a 10-milliliter vial was $21. The price of the same vial is now $275. Those costs can be compounded by the multiple vials that diabetics may require to survive each month. "It’s a very big problem," says Robert Gabbay, chief medical officer at the Joslin Diabetes Center in Boston. "It’s a tragic barrier to care."

The global insulin market is dominated by three companies: Eli Lilly, the French company Sanofi and the Danish firm Novo Nordisk. All three have raised list prices to similar levels. According to IBM Watson Health data, Sanofi’s popular insulin brand Lantus was $35 a vial when it was introduced in 2001; it’s now $270. Novo Nordisk’s Novolog was priced at $40 in 2001, and as of July 2018, it’s $289.

In Washington, the soaring price of insulin has provoked bipartisan concern. Members of Congress are trying to parse the factors that have caused the spike. In November, a congressional caucus released a report on insulin, urging legislation aimed at lowering prices through increased competition and pricing transparency, among other recommendations. In June, the American Medical Association called on the government "to monitor insulin pricing and market competition and take enforcement actions as appropriate." Insulin, in some ways, serves as a proxy for the rising prices across the U.S. prescription drug market. On the campaign trail in 2016, Donald Trump railed against high drug prices, and his administration has vowed to lower them, releasing a flurry of proposals in the past year.

In the meantime, a portion of the more than 7 million diabetic Americans who take insulin are stuck with debilitating costs. Though most don’t pay the full list price for insulin because of insurance coverage and other rebates, some do, especially those who are uninsured, underinsured or facing a coverage gap through Medicare. "The most vulnerable patients are subsidizing the system," William Cefalu, the chief scientific, medical and mission officer of the American Diabetes Association, told a Senate committee in May.

At the same hearing, a father from Maine told senators that a 90-day prescription for just one of his son’s insulins would cost him $1,489.46. That’s with his high-deductible insurance. He testified that he has taken to buying the same three-month supply from a Canadian pharmacy for about $300 plus $50 in shipping. (It’s technically illegal to import medication from other countries, but the Food and Drug Administration generally doesn’t prosecute individuals if it’s a short-term supply for personal use.) He is not alone in his dilemma: The website GoFundMe has thousands of posts with people pleading for help to pay for insulin.

Patients who struggle to afford insulin sometimes ration their supply to make it last longer – a dangerous practice that can create disabling or deadly complications. "It’s very shortsighted to skimp on insulin," says Kasia Lipska, an endocrinologist and diabetes researcher at Yale School of Medicine. "In the long term, it’s going to cost us much more." Poor glycemic control can lead to blindness, kidney failure, amputation, heart disease and stroke. In the short term, patients who stop taking enough insulin can lapse into diabetic ketoacidosis, a condition where blood sugars get too high and the body’s blood becomes acidic. It can become fatal in just hours or a few days.

At the Yale Diabetes Center, Lipska and […]

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