In the past five years, the price of insulin in the US has nearly doubled. Diabetics who do not have medical coverage or insurance have to pay around $1000 every month for the life-saving drug. Many resort to rationing their insulin intake, sometimes with tragic consequences…

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“Dear daughter, I am happy to have shared with you 22 years of your life. I am sad that time has come to an end so soon. No more needles, no more stressing over your health.”

Antroinette Worsham’s eyes fill with tears as she reads a tribute she wrote to her daughter.

Antavia died two years ago. She was a Type 1 diabetic and depended on daily doses of insulin to live. But she could no longer afford to pay for the life-saving hormone once she aged out of her juvenile medical assistance programme at 21.

Antavia was working two jobs but her pay and limited insurance were not enough to cover the cost of the insulin and other crucial supplies, like test strips. She was paying between $1,200 and $1,300 dollars for a 90-day supply of insulin. At times she got insulin from her sister Antanique, who also has Type 1 diabetes, at other times from her grandfather. But finally, she had to start the dangerous practice of rationing.

Antavia died on April 26, 2017, from diabetic ketoacidosis. She was 22.

“My son called me at about 11 o'clock and he said, 'Mommy, Antavia’s not moving.' I said shake her, wake her up, wake her up. Not one time did I think my child was deceased. I didn’t walk over to the house, I just sat on the curb waiting for them to bring her out on the stretcher. But instead I saw her come out in a black bag.”

The first thing you see when you walk into Antroinette’s apartment in Cincinnati, Ohio, is a shrine to her daughter: photographs of Antavia in her prom dress, with her mum and her siblings, and an urn containing her ashes.

Antroinette is worried that when her 18-year-old daughter Antanique ages out of her assistance programme she will also no longer be able to afford her medication.

Antanique Worsham injecting herself with insulin. Antanique Worsham injecting herself with insulin. Jessica Le Masurier

Six to seven million Americans depend on insulin to live. The price has risen so much in the last decade or so that one in four American diabetics are now rationing their insulin, according to a recent study by researchers at the Yale Diabetes Center. Very few of those patients are uninsured, and yet their out-of-pocket expenses are still prohibitively high. Without insurance, a month's supply of insulin costs around $1,000.

One of the types of insulin used by Antavia was Lantus, the leading drug for people with Type 1 diabetes in the United States, which is manufactured by French pharmaceutical company Sanofi.

Without insurance, one five-pen carton of Lantus costs about $280 in the United States. The exact same carton costs about €45 ($50.60) in most pharmacies in France.

The day Antavia died, she had an empty insulin pen by her bed.

After her daughter's death, Antroinette started an initiative called T1Diabetes Journey, to help other people who are struggling to deal with diabetes.

Insulin for all

When researchers in Toronto first discovered insulin in 1921, they sold the patent to the University of Toronto for $1: The hope was that insulin would be available to all. But that is no longer the case in the United States, where between 1996 and 2017 the average price of insulin went up by over 1,000 percent, according to the Union of Concerned Scientists.

Three manufacturers control the market for insulin in the United States: American company Eli Lilly, Danish firm Novo Nordisk, and French multinational Sanofi.

FRANCE 24 requested an interview with Sanofi but the request was rejected. Instead, we were told to read statements made by the company’s CEO Olivier Brandicourt on February 26 when he, along with the heads of other pharmaceutical companies, spoke before the Senate Committee on Finance.

Brandicourt denied that Sanofi’s prices are the problem. “Since 2012, the net price of Sanofi insulins has declined 25 percent, yet patient out-of-pocket costs have continued to rise,” Brandicourt testified. “If you take Lantus, our most-prescribed insulin, the net price has fallen by 30 percent since 2012, yet over the same period average out-of-pocket costs have risen approximately 60 percent for patients with commercial insurance and Medicare.”

Brandicourt essentially blamed middlemen known as Pharmaceutical Benefits Managers (or PBMs) and insurance companies for the higher prices that patients are facing. PBMs are those who bargain with pharmaceutical companies to get a price. In Europe, government agencies do such negotiations but in the US this role is privatised.

The problem with patents

Brandicourt is not telling the whole truth, according to Tahir Amin, the co-founder and co-executive director of I-MAK.org, a global nonprofit organisation that works to lower drug prices. Amin is an intellectual property lawyer who has spent years investigating how pharmaceutical companies use and abuse the US patent system to hike drug prices.

In his office in downtown Manhattan, Amin watches a video of Brandicourt, speaking in front of the Senate Committee on Finance, claiming that Sanofi is not to blame for the rising price of insulin and explains why that is not correct.

“Despite what Brandicourt is saying about their ability to make money on insulin going down, it’s actually not the case. If you look at the price increases since 2012 that we have found in our studies, that doesn’t match up.”

Tahir Amin, the co-founder and director of Intellectual Property at the Initiative for Medicines, Access & Knowledge (I-MAK), at his office in downtown Manhattan. Jessica Le Masurier

A study conducted by I-MAK reveals that Sanofi made more than $15 million every day selling Lantus in the United States and that the price of Lantus jumped 18 percent each year from 2012 to 2016. Amin says the pharmaceutical companies are trying to shift the blame.

“I think the pricing always starts with the companies, and whatever they are making in terms of the rebates they give, it doesn’t take away from the fact that they start with the price so high. It’s a classic blame game. In any real solution to the problem, we have to go upstream and start with the pharmaceutical companies. And what’s interesting to me is what Sanofi has been doing with its patents.”

Lantus is also extremely “over-patented”, according to Amin. He explains that although Sanofi’s primary patents on Lantus expired in 2015, the company has filed 70 secondary patent applications in the US since the drug was first approved and put on the market in 2000. If granted, these additional patents would give Sanofi monopoly protection for up to 37 more years.

“Sanofi is doing everything it can to preserve its exclusivity and monopoly and to prevent competition,” he says.

Pharmaceutical companies could lower their prices but there is little incentive for them to do so.

“The whole market here is not really a healthcare model, it’s an economic model – it’s, ‘Who can make the most out of the system?’ That’s what drives these exponential prices. In Europe you have competition for Lantus and the patents no longer prevent biosimilar versions, whereas there is no biosimilar version of Lantus in the United States. That’s been wrapped up in litigation,” says Amin.

"In Europe, fewer patent applications and more lenient biosimilar regulatory requirements have made way for competitors and that has helped drive down the price of insulin."

‘Your drug prices are homicide’

At a protest against the high price of insulin outside a Sanofi office in Boston, Massachusetts, activists chant, “Sanofi, you can’t hide. Your drug prices are homicide.”

The protest is organised by the Right Care Alliance, a grassroots group connected to the Lown Institute, a think tank calling for healthcare equity. Its president, cardiologist Vikas Saini, does not mince his words.

“We’re trying to remind everyone that there are three big manufacturers of insulin and the price is unacceptably high. People are dying. Sanofi is one of them, Eli Lilly is another and Novo Nordisk is the third. The three of them have carved up the market like a cartel.”

Members of the Right Care Alliance protest against the high price of insulin outside a Sanofi office in Boston, Massachusetts. Jessica Le Masurier

Antavia Lee-Worsham, Jesse Lutgen, Alec Smith, Micah Fischer, Meaghan Patterson Carter, Shane Patrick Boyle: According to the Right Care Alliance, at least six people have died over the last three years because they were rationing their insulin. The number may actually be much higher, according to Angela Lautner, who is part of the group #Insulin4all.

“In Kentucky, in the state that I live in, we have a culture that puts shame on people for saying that they can’t afford a medicine. So when people feel people feel shame that they can’t afford something and that they are rationing a hormone that they need to live, it says something about our country. We need those people at our capitols talking, we need people in the streets.”

Angela Lautner shows two vials of Humalog insulin, one bought in Canada, the other in the US. Jessica Le Masurier

On the front line of the insulin crisis

Mindi Patterson, from Dayton, Ohio, attended a protest with the Right Care Alliance back in the spring of 2018. Mindi’s two sons and her husband Rockwell have Type 1 diabetes and she was concerned about the rising price of insulin. She joined the parents of diabetics who had died from rationing their insulin when they took their children’s ashes to the same Sanofi office in Boston. Back then, Mindi could not have imagined that her family would also suffer such a loss.

Her sister-in-law, Meaghan Carter, went to sleep on the sofa on Christmas Day in 2018 and never woke up. She died in her sleep aged 48 from diabetic ketoacidosis because she was rationing her insulin.

“When Meaghan was diagnosed with Type 1 diabetes in 2000, she would’ve been able to purchase her insulin out of pocket for 30 dollars, without insurance, over the counter.” Mindi explains. “When Meaghan passed away, that same vial of insulin was 300 dollars, close to it. You can’t afford that. One vial only gets you a week and a half.”

Meaghan was a nurse. Mindi describes her as “educated, smart, funny … she took care of everyone else”. She had succeeded in managing her Type 1 diabetes for 18 years, but in June 2018 Meaghan lost one of her jobs and with it, her insurance. She had three other jobs but none of them gave her insurance. A direct deposit from her previous job was due in her account the day she died. Meaghan’s total income for 2018 was $14,000, about half of what she made the year before. Her insulin cost more than $800 a month, more than 60 percent of her annual income.

“She had all these nursing supplies – her stethoscope, her blood pressure cuff, and gauzes and bandages and scissors, and all of the things that nurses have …” says Mindi. “But not enough test strips and not the type of insulin she needed.”

Rockwell Patterson, Meaghan Patterson Carter, Mindi Patterson and her brother in Dayton, Ohio. Jessica Le Masurier

Mindi’s family is on the front line of America’s insulin crisis. Her two sons and husband are also Type 1 diabetics. Her husband Rockwell is disabled and cannot work, making Mindi the sole breadwinner. A retail clerk for Costco, Mindi’s insurance covers the whole family. But she’s terrified of losing her job and her insurance.

“Now, if it doesn’t change, am I gonna lose my whole family? And how soon? Should I be prepared for that now? Without me they’re not gonna make it. And I don’t have the money to help my kids when they are off of our insurance. There’s no way I can afford to pay for two people with Type 1.”

Mindi Patterson at the Patterson Knoll of Woodland Cemetery in Dayton, Ohio. Jessica Le Masurier

Diabetics in the US often have to make difficult choices – sometimes they cannot afford to cover their rent because they have to buy insulin. Angela Lautner even moved states to have a better insurance coverage plan for her insulin. She is a flight dispatcher, planning flight paths in Kentucky, but was training to become a pilot before her diabetes diagnosis cut her dream short. Pilots with diabetes are not allowed to fly commercially in the US. Still, Angela’s job at the airport enables her to make regular trips to Canada to stock up on extra insulin. “So this was 22 US dollars from Canada,” explains Angela holding up a vial of Humalog insulin. “I purchased this in Winnipeg at a grocery store pharmacy. At the same retail pharmacy here in Florence, Kentucky, that would’ve been over 300 dollars retail.”

Other diabetics who cannot afford a trip to Canada or Mexico resort to the black market. There are private Facebook groups in which people give away insulin to those in desperate situations.

Almost impossible to ‘follow the money’

In early March, US pharmaceutical company Eli Lilly announced that it would sell a cheaper generic version of its rapid-acting insulin Humalog. The company says the generic insulin will be half the price of Humalog, with a list price of $137.35 per vial or $265.20 for a pack of five pens. Eli Lilly touted this as a response to the insulin crisis, yet according to Dr. Saini, who leads the Right Care Alliance, it is nothing more than a public relations stunt. He says it will not change the reality for those most at risk.

“First of all, for those without insurance they can’t afford a 50 percent reduction. They need a 90 percent reduction. Secondly, Eli Lilly will continue to provide the brand name for those with insurance … What is that? What does that say? Well, it says that those of you with insurance will suck up more money and what it really means is that the people who have insurance won’t feel the pinch, and the bet being made by the company is that the noise won’t really rise up, or if insurance premiums rise they won't blame it on drug prices, they’ll blame it on the insurance companies.”

Dr Saini says that the backroom deals done between pharmaceutical giants, PBMs and insurance companies are too opaque. He is calling for total transparency.

Dr. Vikas Saini, President of the Lown Institute, at a protest outside a Sanofi office in Boston. Jessica Le Masurier

Insulin is just one of the most dramatic examples of the rising prices of prescription drugs in the US because people are dying as a consequence. In June 2018, the American Medical Association called on the government “to monitor insulin pricing and market competition and take enforcement actions as appropriate”.

Back in 2016, when Donald Trump was on the campaign trail, he made a lot of noise about high drug prices. His administration has promised to lower them but so far no concrete action has been taken.

Trump’s health and human services secretary is Alex Azar, the former CEO of Eli Lilly. He made $2 million in his final year at the pharmaceutical company and also received a $1.6 million severance package.

The US system for pricing drugs is notoriously complicated. In 2017 the National Academy of Medicine assembled an expert panel to study the issue. They concluded that it is next to impossible for outsiders to “follow the money”.

This lack of transparency has created a system in which pharmaceutical companies, pharmacy benefit managers and insurance companies reap the rewards of rising prices while patients foot the bill. For diabetics in the United States, who are forced to ration their insulin, this can mean paying with their lives.

Text by Jessica Le Masurier.

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