In the United States, three pharmaceutical groups control virtually the entire insulin market. Faced with steadily rising prices and a lack of care, many patients are choosing to ration their insulin. According to one NGO, this behaviour has already cost the lives of at least six people in three years.
“My darling daughter. I’m happy to have shared 22 years with you. I’m so sad to have lost you so soon.” With foggy eyes, Antroinette Worsham reads these few lines written for her daughter.
Antavia died two years ago. A type 1 diabetic, she depended on daily doses of insulin to survive. This treatment became unavailable when she reached the age of 21 and left the children’s health insurance program.
With the limited health coverage she could afford, the young woman had to pay $1,200 to $1,300 out of her own pocket for 90 days of medication. “She could not afford to pay for her insulin. She first used some of her sister’s and her grandfather’s,” Antroinette recalls. Then Antavia started to reduce the doses of insulin she was injecting herself. Until April 26, 2017, the day she died. She was 22 years old.
“My son called me around 11 o’clock and said: ‘Mom, Antavia isn’t moving’. I said: “But wake her up, wake her up!” At no time did I think she could be dead. I couldn’t go in the house. I sat on the side of the road. I thought they were going to take her to the hospital, but instead I saw her body coming out in a body bag.”
In Cincinnati, Antroinette’s apartment is full of pictures of her daughter, candles and the urn containing Antavia’s ashes. It’s hard for her little sister to ignore. A type 1 diabetic too, and at the age of 18, Antanique will soon be out of the insurance program that now allows her to buy her treatment.
Six to seven million Americans depend on insulin to live. The price of insulin has risen steadily, to the point where one in four diabetics is rationing it, according to a recent Yale University study.
A type 1 diabetic too, Antanique will soon leave the insurance program that allows him to buy his treatment today. Jessica Le Masurier
Insulin for everyone
In 1921, when Canadian researchers discovered insulin, they sold the patent for one dollar to the University of Toronto. Their goal was to make the drug available to all patients. A century later in the United States, that ideal is a long way off. The average price of insulin has skyrocketed in recent years: more than 1,000% between 1996 and 2017, according to the Union of Concerned Scientists.
Today, without insurance, five vials of Lantus, Sanofi’s flagship drug, cost $280. In France, they are invoiced for less than 50 euros, fully reimbursed by Social Security.
In the United States, three pharmaceutical groups control 99% of the insulin market: Eli Lilly of the United States, Novo Nordisk of Denmark and Sanofi of France. Labs are regularly accused of raising their prices with complete opacity. A situation that exasperates certain elected representatives, Democrats and Republicans alike.
On February 26, the CEOs of the three groups were heard by the Senate Finance Committee in Washington. Olivier Brandicourt, the boss of Sanofi, came from Paris to explain himself. “Since 2012, the net price of Sanofi’s insulins has fallen by 25%,” he told the bipartisan commission. According to him, the price increases are due to the many intermediaries between drug manufacturers and patients, such as insurance companies or pharmacy negotiators. In Europe, governments set prices, but in the United States, manufacturers and intermediaries have free rein.
Sanofi “doesn’t tell the whole truth.”
Tahir Amin is the co-founder and co-chair of I-MAK.org, a non-profit organization whose goal is to bring down drug prices. He has been investigating laboratory practices for years. According to I-MAK.org, the price of Lantus has increased by 18% each year between 2012 and 2016, contrary to what Olivier Brandicourt claims. And Sanofi would earn 15 million dollars every day from its insulin sales.
According to I-MAK.org, Sanofi protects its patents to slow the arrival of new competing products. “Sanofi does everything possible to preserve its monopoly and prevent any competition,” explains Tahir Amin.
In Boston, demonstrations in front of Sanofi’s premises regularly bring together patients and their families. At the beginning of March, dozens of them marched under the windows of the French laboratory: “Sanofi, you can’t hide! Your prices are murderous!” Among the activists were members of the Lown Institute, an apolitical think tank. “We’re trying to remind everyone that there are three insulin producers who keep the price of insulin extremely high. These labs have shared the market like a cartel,” says Vikas Saini, a doctor and president of the organization.
Rationing Insulin for Survival
Antavia, Jesse, Alec, Micah, Meaghan, Shane: According to the NGO Right Care Alliance, at least six people have died in the last three years due to insulin rationing. And the number of victims may be higher, according to Angela Lautner, a type 1 diabetic and member of the #InsulinForAll group: “In Kentucky, the state I live in, there is a culture of shame. You can’t say you can’t afford your medication. And so people shut up and ration when they need that hormone to live. It means something about our country. We need our politicians, the people on Capitol Hill, to talk. We also need people to take to the streets.”
In Dayton, a small industrial town in Ohio, Mindi Patterson is not recovering from the death of her sister-in-law. Meaghan was about to turn 48. Last Christmas, she went to bed and never woke up.
“When Meaghan was diagnosed with type 1 diabetes in 2000, she had to put about $30 out of her pocket,” Mindi explains. When she died, the same insulin cost $300. It was impossible!”
Meaghan was a nurse. “She was funny, smart. She was always taking care of people,” according to her sister-in-law. In June 2018, Meaghan lost one of her health insurance policies. Coverage from her three other jobs did not allow her to care for herself. In 2018, the nurse earned $14,000 and her insulin was costing her $800 a month, or 60 per cent of her income.
Diabetes, Mindi Patterson knows all about. In addition to her sister-in-law, her two sons and her husband Rockwell have it. Recognized handicapped, Rockwell does not work and the financial weight of the family rests entirely on Mindi. For the moment, her health insurance takes care of hers but she is afraid of the future. Her sons will soon turn 21 and will no longer qualify for her coverage.
“If this doesn’t change, am I going to lose my family? And when? Should I prepare now? Without me, they won’t make it. And I don’t have the financial means to help my children when they get out of my insurance. I’ll never be able to pay for two Type 1s. That’s gotta change. I need a change now.”
Angela lautner found another way to get supplies when she needs them. Working in an airport, she travels regularly to Canada. There, she buys insulin much cheaper than at her local pharmacy. “This bottle cost me 22 US dollars. I bought it in Canada at a Winnipeg pharmacy,” she explains. The same drug, bought here in Kentucky, costs over $300.”
Need 90% price reduction
At the beginning of March, the American laboratory Eli Lilly announced the release of a generic insulin, sold at 50% less than its flagship drug, Humalog, at $137 per bottle. Eli Lilly claims to be acting in the interests of patients, but according to Dr. Saini, this is just a publicity stunt: “Patients without insurance will not be able to buy this drug either, even 50% cheaper. They need a 90% discount. Then Eli Lilly will continue to charge the full price to those with insurance. What the hell does that mean? What’s going to happen is that the patients with insurance won’t see any change. In fact, the bet is that if there are price hikes, people will go after their insurance companies and not the drug companies.”
The opacity with which drug prices are set makes the highest level of government react. Donald Trump regularly challenges drug companies and middlemen, accusing them of raking in “absolute wealth” at the expense of American taxpayers. Yet, since he has been in the White House, prices have continued to rise.