KI thought she finally made it.
After years of dieting, exercise routines, failed obesity treatments and being overweight shamed, the 49-year-old Missouri teacher found a drug that helped her lose 25 pounds in three months. “It was life-changing,” she says.
In addition to losing weight, Kay experienced other changes that seemed almost miraculous. She soon noticed that the painful spasms of her fibroids disappeared and the swelling in her legs disappeared. “I could go for a walk again,” Kay told me. She even stopped taking Wellbutrin. “It was about much more than just weight loss.”
Then everything was taken away. The new diabetes drug Mounjaro was behind Kay’s weight loss, but when the manufacturer, Eli Lilly, changed the coupon terms, her transformation became prohibitive — and unsustainable. If Kay wanted to keep losing weight, live pain-free, and avoid a dreaded diabetes diagnosis, she’d have to pay $1,000 each month — more than the mortgage on her house, and far more than the $25 a month she’d paid with the original savings program from Eli Lilly. Mounjaro, the name brand for tirzepatide, belongs to a new class of nutrient-stimulated hormone therapies that has changed the way type 2 diabetes (T2D) is treated. While similar therapies target a hormone called GLP-1, Lilly’s Mounjaro is the first to target a second hormone, GIP. Together, these hormones reduce appetite and delay gastric emptying, helping a person feel fuller for longer. In a 2022 study of tirzepatide, participants saw an average weight reduction of 22.5 percent. In a separate study, Novo-Nordisk’s celebrity-endorsed Ozempic, which focuses only on GLP-1, showed an average weight reduction of 16.9 percent.
This critical side effect of Mounjaro — rapid weight loss that rivals bariatric surgery — has made the drug a hot flashpoint among diabetic patients, obese patients desperate to avoid a T2D diagnosis, people seeking to improve their physical and mental health through weight loss. , insurance companies and Eli Lilly.
The conflict, exacerbated by a shortage of Mounjaro and two of his GLP-1 predecessors, Ozempic and Trulicity, has intensified on social media. Diabetic patients believe that obese people are stealing their drug, as it is currently only approved for the treatment of T2D (although FDA approval for the treatment of obesity may come this summer). Obese people are angry that obesity is not recognized as a disease. And users who can’t afford it say they’ve been let down by Big Pharma.
“I felt like a normal person for the first time in a long time,” says Jordan Goodwin, a 30-year-old from Dallas who has polycystic ovary syndrome, or PCOS. Goodwin lost 30 pounds with Mounjaro in three months before her coupon unexpectedly stopped working and the drug became unaffordable. Now it’s all back – I’m insatiable. Should I let myself get diabetes so I can get the medication that works?”
This is why Lilly’s decision to change coupon terms hit patients so hard. “Not only did patients probably not know there was a time limit in the first place, but they kind of moved the ball, so to speak,” said Michelle Mello, a professor of law and health policy at Stanford University. “They moved a goalpost up to create the dependence and then pulled the rug even faster.”
Under that rug is a big bill: Even if Mounjaro is approved for the treatment of obesity, it will cost about $13,000 a year. “Surprisingly, it’s not more cost-effective” than Ozempic, “even though it does provide more weight loss,” said Dr. David Rind, the Chief Medical Officer of the Institute for Clinical and Economic Review.
As Kay and Jordan’s weight slowly creeps back up, they are reluctant participants in the phenomenon of “yo-yo dieting,” or weight swings, defined as losing and gaining weight repeatedly over a lifetime. Studies show that cycling with weights adds stress to cardiovascular systems and affects psychological well-being. Weight cyclists are at risk for fluctuations in blood pressure, heart rate and unstable levels of glucose, lipids and insulin, among other negative consequences.
Even people with diabetes, who are Mounjaro’s only approved beneficiaries for now, are finding the drug out of reach because of supply shortages, insurance denials and out-of-pocket costs.
“In both populations, both people lose,” says Dr. Holly Lofton, the director of the weight management program at NYU Langone Health. “They lose it because they don’t have enough glucose control and they have an increase in their fat cell size, which means they have more inflammation. Even if their diabetes stays in remission, that can still wreak havoc when they gain weight again.”
What was a panacea for many is now largely unattainable.
“If they started people on something that would be dangerous to quit, is that really the appropriate thing to do?” asked Carl Coleman, a professor at the Seton Hall Center for Health and Pharmaceutical Law and Policy. “Is it appropriate to encourage people who otherwise couldn’t take it without a plan [without] making it possible for them to continue using it?”
When Eli Lilly Mounjaro debuted in May 2022, it did so with a coupon that allowed anyone with commercial insurance to get Mounjaro for just $25 a month until July 2023, even if their commercial insurer didn’t cover it. The huge demand – fueled in part by social media success stories, the low cost and by telehealth companies more than willing than traditional GPs to prescribe Mounjaro off-label – overtook supply. In November, Eli Lilly then changed the terms of the coupon without warning, resulting in mass confusion and vicious encounters both online and in pharmacies nationwide.
“The manufacturer never made any kind of announcement that there was a change to the terms and conditions,” said Sara, a Walmart pharmacist in Alabama. “I actually had to poke around online forums to find out what was going on.”
What Sara discovered was that Eli Lilly’s “new” coupon required patients to attest to a
T2D diagnosis. The new discount price was increased from $25 to $500, but only for those whose insurance covered Mounjaro. Otherwise, the panacea would cost about $1,000 a month.
“Lilly’s tirzepatide savings program is only intended for commercially insured adult patients in the US who have a diagnosis of type 2 diabetes and are prescribed on-label tirzepatide,” said a spokesperson for Eli Lilly. “We have reinforced this intended use through the addition of a patient attestation highlighting a type 2 diabetes requirement on the savings program page, as well as recent changes to the program terms and conditions in November 2022 and starting again in January 2023.”
Customers erupted when their coupons abruptly stopped working and begged Sara to find a way to keep the old discount price. She absorbed the patients’ frustration with Lilly and their insurers: “Don’t they want to prevent me from developing diabetes?” they would ask, over and over.
“Patients felt like we made up the whole deficit,” says Matt, an Indianapolis pharmacist who works at a major pharmacy chain. “A woman said, ‘You’re denying me my medicine. You don’t want me to have it.’ And then she threatened to sue us.”
In the gladiatorial pits of Reddit and Facebook, obese and diabetic patients cross swords over who is more entitled to Mounjaro.
“I don’t like the anger that much of the weight-loss community exhibits toward diabetics,” said Lauren Rogers, a diabetic from Wheeling, West Virginia. “They say, ‘We deserve to lose weight and Mounjaro isn’t going to help you control your blood sugar,’ and ‘Just go on another diabetes medication.’ It’s really painful.”
Diabetics blame obese people for causing Mounjaro supply problems, while those who are obese want it recognized as a disease and not a moral failure. They resent being told that they do not deserve such medication, citing Mounjaro as a preventative medicine. Obesity reduces the quality and length of life and is associated with diseases such as diabetes, heart disease and some cancers.
“Obesity is not a choice. Obesity is a complex, chronic, neurometabolic disease with a distinct pathophysiology,” said Dr. Ania Jastreboff, an endocrinologist and physician-scientist in obesity medicine at Yale University and lead author of a paper demonstrating the superior efficacy of tirzepatide against obesity.
When someone takes an anti-obesity drug like Mounjaro, the amount of fat the body wants to keep is re-regulated, usually to a lower weight. “When you take the medication off, that defended fat mass goes back up and the weight comes back,” Jastreboff said. “To maintain the newly re-regulated defended fat mass and weight reduction, you must continue to take the medication.”
“We are working to ensure that people with type 2 diabetes can continue to fill their prescriptions normally,” said an Eli Lilly spokesperson. “We remain committed to ensuring that people with type 2 diabetes taking tirzepatide (Mounjaro) get their medications.”
Due to shortages, Rogers had to stop taking Mounjaro for three weeks. “I was devastated and full of despair,” said the 58-year-old. “I gained a few pounds, but I was surprised how bad I felt when my [blood glucose] numbers got out of hand again. It was a wake up call for me to realize how sick diabetes makes you.
Amid all the complaints, Mounjaro looks like a gold mine. “We are modeling global revenue of $4.7 billion by 2024,” said Geoff Meacham, an analyst at Bank of America. Colin Bristow, an analyst at UBS, predicted that Mounjaro will be the best-selling drug of all time. “Our current estimate for Mounjaro sales is about $30 billion by the end of the decade,” he said.
“Mounjaro is a game changer and that’s no exaggeration,” says Paul Ford, a 53-year-old former firefighter who’s lost 30 pounds and says he no longer needs a CPAP machine to sleep. “I feel so much better. I haven’t felt this way in years. If I had felt this way when I was a firefighter, I would have continued longer.”
Mounjaro could well become one of the most lucrative drugs ever, with the potential to radically change tens of millions of lives for the better. But for many of the drug’s early adopters, Mounjaro’s promise has prepared them for another round of weight gain, comorbidities and despair.
“It’s almost worse when you know it’s there, just out of reach,” Kay said. “Lilly could have come up with some solutions for people who had already started on the drug.” For now, she lives in uncertainty, with no guarantee that she will regain access to the medication.