The 1921 discovery of insulin ushered in a new era in endocrinology. Canadian researchers transformed diabetes from certain death sentence to chronic illness, infusing hormone researchers and doctors with giddy optimism.
Doctors soon thought that every hormone ailment would be reversed. All that was needed was to mimic what the University of Toronto team did with insulin: isolate the active ingredient from the gland and give it to those in need. But this initial enthusiasm proved premature. While insulin from cows and pigs helped diabetics, other diseases weren’t treated so easily. Growth hormone gleaned from animals did not work in people — only human growth hormone did. And the claim one doctor made that goat testicle extracts would revive aging men proved to be hogwash.
The tale of insulin discovery includes a surgeon and a medical student, neither hormone experts, who — while their pessimistic laboratory director was out of town — isolated the lifesaving treatment. The real story, of course, is more complicated and has been retold by Michael Bliss in The Discovery of Insulin and in his biography of surgeon and Nobel laureate Frederick Banting.1
And yet there’s another side of the insulin narrative that has, until recently, been dangerously overlooked. Today, it’s not about the discovery of new treatments. Instead, it’s about cost and access.
Those with Type 1 diabetes suffer the most. In an act of self-sabotage, their immune cells attack insulin-producing cells in the pancreas. Without the ability to produce insulin, they require an external source of the hormone to survive. A week without insulin kills.
Type 2 diabetes, on the other hand, results from a dysfunctioning insulin system in which cells become desensitized to insulin. About two-thirds of those with Type 2 diabetes control their condition primarily through diet, exercise, and other medications. The rest must have insulin.
Expensive insulin was exactly what the Canadian discoverers hoped to avoid. They patented the hormone discovery to ensure quality control but sold it for a mere three dollars. In the early days, a University of Toronto committee controlled the market. They lowered the price of a vial from $2.40 in 1925 to $0.57 in 1941.2
As the original patents expired, though, the philosophy toward insulin began to change. On March 31, 1941, three insulin manufacturers — Eli Lilly & Company, Sharpe & Dohme, and E. R. Squibb — were indicted on charges of violating an anti-trust law by “unlawfully combin[ing] and conspir[ing] to bring about arbitrary, uniform and non-competitive prices for insulin and to prevent free and normal competition in its sale throughout the United States.”3
The lawsuit didn’t prevent subsequent price hikes. With new patents for more advanced formulas, the price of insulin has skyrocketed in recent years — from $40 a vial in 2002 to $130 a vial in 2013.4 Most people with Type 1 diabetes go through about one vial every one or two weeks — the amount varies by age and metabolic needs. For those with Type 2 on the hormone, the amount required depends not only on metabolic needs but also on the amount of insulin resistance.
There are so many people and organizations with vested interests that it’s hard to pinpoint who is the most to blame. There are, of course, the drug-makers. But there are also insurers, who decide which type of insulin gets covered.
A nurse who specializes in pediatric endocrinology told us that she battles with insurance companies to keep children on the same brand of insulin, rather than switching solely because one drug maker negotiated a better deal. In theory, one company’s insulin should work the same as the other. But the subtle molecular differences between one brand and another can produce different biological responses — meaning that a patient’s sugar may not react the same way.
Then there are the pharmacy benefit managers, for-profit companies that serve as middlemen to negotiate prices between the insurance companies and drug manufacturers. But they’ve been accused of pocketing the savings rather than passing them along to the patients. California, Nevada, and Vermont have passed “transparency” laws so that patients can follow the money flow from drug maker to drug buyer.5
And lastly, aside from rising insulin costs, America’s malfunctioning health care system can also limit access to insulin. Miscommunication between providers, pharmacists, and others can leave tragedies in its wake.
Four years ago on the afternoon of New Year’s Eve, 36-year-old Kevin Houdeshell died when his pharmacist didn’t sell him his monthly supply of insulin because they did not receive the prescription. Houdeshell, who lived on his own, went home, perhaps thinking he could get by eating less or extending the little medicine he had until he was able to contact the physician’s office.
His parents recalled in an interview that no one knows the details except that there was a phone system problem with his doctor’s office, and it was a holiday weekend. He was found a few days into the New Year by a colleague who worried when he didn’t show up for work.
Rather than sue for malpractice, Kevin’s family members have channeled their anger into activism. Thanks to their efforts, Ohio passed a law two years ago allowing pharmacists to give a 30-day supply of emergency drugs without a prescription if the physician is inaccessible. Since then, ten more states have passed similar laws.
The Houdeshells are part of a global network of parents, patients, nurses, doctors and lawyers have also been fighting for access and affordability. The American Diabetes Association launched a Make-Diabetes-Affordable Campaign in 2016 calling for transparency in pricing, making drugs affordable to those who need them, and demanding Congressional hearings regarding the price increase.6
Last year, a class-action lawsuit was filed in the State of Massachusetts against the three leading manufacturers of insulin: Sanofi, Novo Norodisk, and Eli Lilly. This litigation claims that these three companies have plotted to simultaneously increase their prices over the last two decades, despite negligible advances in the effectiveness of their drugs.7
Meanwhile something of a black market has sprung up. Laura Marston, a 36-year-old lawyer in Washington D.C. with diabetes, is an advocate of Insulin4all, a network among diabetics. “I’m like the Freakin’ Insulin Dallas Buyer’s Club,” she said referring to the 2013 film based on the true story of a patient with HIV in the 1980s who smuggles unapproved drugs into the U.S. for fellow patients. “I send insulin to lots of people and I get it to send to other people, or if they have a relative who dies, they send me the stash and I send it to people.”
The twentieth century has ushered in huge advances in endocrinology, many of them tangentially related to the optimism that spurred endocrine research. But these advances have come with a price — one that has not received the legislative attention it deserves.
In 1923, shortly after insulin came on the market, a New York Times article trumpeted the discovery but voiced concern about potential price hikes.8 Dr. Van Buren Thorne, the author, said the limited supplies (it wasn’t easy to glean enough insulin from animals for the thousands of children that needed it) could skyrocket the cost.
If scientists hadn’t developed a way to mass-produce insulin, Van Buren Thorne might consider the insulin prices we see today to be a typical byproduct of supply and demand. But in the intervening years, researchers have, in fact, discovered ways to make vast quantities of insulin. Supply is no longer a problem. Instead, the high price of insulin points to something far more sinister: drug makers and middlemen profiting off preventing Americans from accessing the hormone they need to live.
UPDATE: An earlier version of this story mistakenly referred to Laura Marston as a founder of Insulin4all.
Research for this article was supported by the Economic Hardship Reporting Project.
- Michael Bliss, The Discovery of Insulin (University of Chicago Press: 2007), Michael Bliss, Banting: A Biography (University of Toronto Press: 1993). Return to text.
- “The Insulin Monopoly,” JAMA 117, no. 2 (1941):112, doi:10.1001/jama.1941.02820280034009. Return to text.
- “Indicted in a Plot on Insulin Prices,” New York Times, March 31, 1941. Return to text.
- Hua X, Carvalho N, Tew M, Huang ES, Herman WH, Clarke P, “Expenditures and Prices of Antihyperglycemic Medications in the United States: 2002-2013,” JAMA 315 (2016): 1400–1402; Matthew P. Petersen, “Economic Costs of Diabetes in the U.S. in 2017,” American Diabetes Association, Diabetes Care 41, no. 5 (May 2018): 917-928. Return to text.
- The Coalition to Protect Patient Choice, “States Are Taking Action on Drug Prices. Here’s A Quick List,” June 6, 2017. Return to text.
- American Diabetes Association, “Issues Resolution and Launches Petition Calling for Access to Affordable Insulin,” November 17, 2016. Return to text.
- Class Action Complaint against Sanofi, Novo Norodisk, and Eli Lilly, United States District Court of Massachusetts. Filed 01/31/2017. Return to text.
- Van Buren Thorne, “Insulin, New Hope of Diabetics, Difficult and Costly to Produce: World Demand Exceeds All Available Sources of Supply, With 550,000 to 2,000,000 Sufferers in This Country — Not a Cure, But a Remedy That Must Be Taken for Life,” New York Times (July 8, 1932, p. XXII). Return to text.
It’s worrying to see a reference to American Diabetes Association, who accept millions from insulin makers (https://khn.org/patient-advocacy/#organization-131623888) and no mention of T1International’s advocacy efforts that are featured in two of your photos. All advocacy should not be lumped under the ADA umbrella and I fear that people might think the T1International actions relate to the ADA. We need more independent voices free from industry influence in order to achieve #insulin4all.