KI thought she finally made it.
After years of dieting, exercising routines, failed obesity treatments and the shame of being overweight, 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 quickly noticed that the painful spasms of her fibroids disappeared and the swelling in her legs went away. “I could go walking again,” Kay told me. She even stopped taking Wellbutrin. “It was about a lot more than just losing weight.”
Then everything was taken away. New diabetes drug Mounjaro was behind Kay’s weight loss, but when manufacturer Eli Lilly changed its coupon terms, her transformation became priceless — and unsustainable. If Kay wanted to continue to lose weight, live pain-free, and avoid a dreaded diabetes diagnosis, she’d have to shell out $1,000 a month — more than the mortgage on her house and well over the $25 a month she has with Eli had paid for Lilly’s original savings program. Mounjaro, the brand name for tirzepatide, belongs to a new class of nutrient-stimulated hormone-based therapies that have transformed 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 decrease appetite and delay gastric emptying, making a person feel full 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 targets only 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 heated flashpoint between patients with diabetes, obese patients desperate to avoid a T2D diagnosis, people improving their physical and mental health through weight loss want, done. insurance companies and Eli Lilly.
The conflict, exacerbated by the lack of Mounjaro and two of its GLP-1 predecessors, Ozempic and Trulicity, has been exacerbated on social media. Diabetes patients think those with obesity are stealing their drug since it’s currently only approved for treating T2D (although FDA approval for treating obesity could come as soon as 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 really long time,” says Jordan Goodwin, a 30-year-old from Dallas who suffers from polycystic ovary syndrome, or PCOS. Goodwin lost 30 pounds on 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 allow myself to get diabetes so I can get the drug that works?”
This is why Lilly’s decision to change the coupon terms hit patients so hard. “Not only were patients probably unaware that there was a time limit at all, they kind of got the ball rolling,” said Michelle Mello, professor of law and public health at Stanford University. “They moved up a goalpost to create the dependency and then pulled the ground out even faster.”
Beneath that rug lies a hefty bill: Even if Mounjaro is approved for treating obesity, it costs about $13,000 a year. “Surprisingly, it’s not less expensive” than Ozempic, “although it does result in more weight loss,” said Dr. David Rind, Chief Medical Officer of the Institute for Clinical and Economic Review.
As Kay and Jordan’s weight slowly regains weight, they involuntarily engage in the phenomenon of “yo-yo dieting,” or weight cycling, defined as repeatedly losing and gaining weight throughout life. Studies show that cycling with weights puts additional strain on the cardiovascular system and affects mental well-being. Cyclists are at risk of fluctuations in blood pressure, heart rate and unstable levels of glucose, lipids and insulin, among other negative consequences.
Even people with diabetes, who are currently the only approved beneficiaries of Mounjaro, are finding the drug out of reach due to supply shortages, insurance denials and cost of ownership.
“In both populations, both people are losing,” says Dr. Holly Lofton, director of weight management programs at NYU Langone Health. “They lose because they have inadequate glucose control and their fat cell size increases, which means they have increased inflammation. Even if their diabetes stays in remission, if they regain weight, it could still hurt them.”
What was a miracle cure for many is mostly inaccessible today.
“If you start people doing something that would be dangerous to stop, is that really appropriate?” 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 could not take it without a plan (without) enabling them to continue taking it?”
When Eli Lilly Mounjaro debuted in May 2022, he did so with a coupon that would allow anyone with commercial insurance to purchase Mounjaro for just $25 a month through July 2023, even if their commercial insurer didn’t cover it. Massive demand — fueled in part by social media success stories, low cost, and telemedicine companies more than willing to prescribe Mounjaro off-label — caught up with supply. Then, in November, without warning, Eli Lilly changed the terms of the coupon, causing mass confusion and caustic encounters both online and in pharmacies across the country.
“The manufacturer has never announced a change in terms of business,” says Sara, a Walmart pharmacist in Alabama. “I basically had to sniff online forums to find out what was going on.”
What Sara found was that Eli Lilly’s “new” coupon required patients to: a
T2D diagnosis. The new discount price has increased from $25 to $500, but only for those whose insurance covers Mounjaro. Otherwise, the miracle cure would cost around $1,000 a month.
“Lilly’s Tirzepatide savings program is intended only for commercially insured U.S. adult patients who have been diagnosed with type 2 diabetes and have been prescribed tirzepatide on-label,” a spokesman said by Eli Lilly. “We have reinforced this intended use with 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’s terms and conditions in November 2022 and again from January 2023.”
Customers erupted when their coupons suddenly stopped working, asking Sara to find a way to get the old coupon price. She took on patients’ frustration with Lilly and her insurers, “Aren’t they trying to prevent me from getting diabetes?” they would ask over and over again.
“Patients felt like we made the whole deficiency thing up,” says Matt, an Indianapolis-based pharmacist who works at a major retail pharmacy chain. “One woman said, ‘You’re refusing me my medication. You don’t want me to have it.’ And then she threatened to sue us.”
In the gladiator pits of Reddit and Facebook, patients with obesity and diabetics are crossing swords over who is more entitled to mounjaro.
“I don’t like the anger that much of the weight loss community is showing towards 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 take another diabetes medication.’ It’s really painful.”
Diabetics blame those with obesity for causing mounjaro supply problems, while those suffering from obesity want it to be recognized as a disease and not a moral failure. They resent hearing that they do not deserve such medicines and cite mounjaro as a preventive medicine. Obesity reduces the quality and length of life and is linked to diseases such as diabetes, heart disease and some cancers.
“Obesity is not a choice. Obesity is a complex, chronic, neurometabolic disease with a clear pathophysiology,” said Dr. Ania Jastreboff, endocrinologist and doctor of obesity medicine at Yale University and lead author of a study demonstrating the superior effectiveness of tirzepatide against obesity.
When someone takes an anti-obesity drug like Mounjaro, the amount of fat the body wants to retain is re-regulated, usually at a lower weight. “When you take the drug off, that defended fat mass goes back up and the weight is regained,” Jastreboff said. “In order to continue to maintain the newly regulated defended fat mass and weight reduction, you must continue to take the drug.”
“We are working to ensure that people with type 2 diabetes can continue to fill their prescription as usual,” said an Eli Lilly spokesman. “We remain committed to ensuring that people with type 2 diabetes who are taking tirzepatid (Mounjaro) receive their medication.”
Due to shortages, Rogers had to stop taking Mounjaro for three weeks. “I was a wreck and full of desperation,” said the 58-year-old. “I put on some pounds again, but I was surprised at how bad I felt when my (blood sugar) levels got out of control again. It was a wake-up call for me to realize how sick diabetes can be.”
Amidst all the complaints, Mounjaro looks like a gold mine. “We’re projecting $4.7 billion in global revenue in 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’s sales is around $30 billion by the end of the decade,” he said.
“Mounjaro is changing everything, and that’s no exaggeration,” said Paul Ford, a 53-year-old former firefighter who has 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 as a firefighter, I would have stuck with it longer.”
Mounjaro could very well prove to be one of the most lucrative drugs of all time, with the potential to radically change the lives of millions of people for the better. But for many of the drug’s early adopters, Mounjaro’s promise has set them up for another round of weight gain, comorbidities and despair.
“It’s almost worse knowing it’s there but just out of reach,” Kay said. “Lilly could have provided some solutions for people who have already started the drug.” For now, she lives in uncertainty with no guarantee that she would be able to access the medication again.