PotassiumI thought she finally made it.
After years of dieting, exercising, failed obesity treatments and the stigma of being overweight, the 49-year-old teacher from Missouri found a drug that helped her lose 25 pounds in three months. “It's life-changing,” she said.
In addition to losing weight, Kai has undergone other almost unthinkable changes. She quickly noticed that the cramping pain from the fibroids was gone, as was the swelling in her legs. “I can go for a walk again,” Kay told me. She even stopped taking Wellbutrin. “It's not just weight loss.”
Then it was all taken away. New diabetes drug Mounjaro was behind Kay's weight loss, but when manufacturer Eli Lilly changed the terms of her coupons, her switch became unbearable — and unsustainable. If Kay wants to keep losing weight, live pain-free, and avoid the dreaded diabetes diagnosis, she'll have to pay $1,000 a month—more than the mortgage on her house and far more than her $25 monthly expenses. Has been paying with Eli Lilly's original savings plan. Mounjaro is the brand name for tirzepatide, a novel nutrient-stimulating hormone therapy that is changing the way type 2 diabetes (T2D) is treated. While similar therapies target a hormone called GLP-1, Eli Lilly's Mounjaro is the first to target a second hormone, GIP. These hormones work together to reduce appetite and delay gastric emptying, making a person feel full for longer. In a 2022 study of tirzepatide, participants lost an average of 22.5% of their body weight. In another study, Novo-Nordisk Celebrity Endorsed Ozempic targeting only GLP-1 showed an average weight loss of 16.9%.
Such severe side effects of Mounjaro — rapid weight loss comparable to bariatric surgery — have made the drug a hotspot among diabetics, obese patients desperate to avoid a T2D diagnosis, people looking to lose weight to improve their physical and mental health, insurance companies and Eli Lilly.
The conflict has intensified on social media over shortages of Mounjaro and its two GLP-1 predecessors, Ozempic and Trulicity. Diabetics think obese people are stealing their drug because it's currently only approved to treat T2D (although the FDA could approve obesity as soon as this summer.) Obese people are outraged that obesity isn't being recognized as a disease . Users who can't afford it say they've been dumped by Big Pharma.
“For the first time in a long time, I feel like a normal person,” said Jordan Goodwin, a 30-year-old polycystic ovary syndrome (PCOS) patient from Dallas. Goodwin lost 30 pounds in three months on Mounjaro before her coupon unexpectedly expired and the drug became unaffordable. “Now it's all back – I can't get enough. Should I get myself diabetic so I can get medication that works?”
That's why Eli Lilly's decision to change the terms of its coupons hit patients so hard. “Patients may not only be unaware that there is a time limit in the first place, but they could say they moved the ball,” said Michelle Mello, a professor of law and health policy at Stanford University. “They move up a goalpost to create a dependency, and then Pull out the rug faster.”
Under that rug is a huge bill: Even if Mounjaro were approved to treat obesity, it would cost about $13,000 a year. “Surprisingly, it wasn't more cost-effective than Ozempic,” “despite it resulted in more weight loss,” said Dr. David Rind, chief medical officer at the Institute for Clinical and Economic Review.
As Kay and Jordan slowly regained their weight, they were reluctant to participate in “yo-yo dieting,” or the phenomenon of weight cycling, defined as repeated weight loss and weight gain over a lifetime. Research shows that weight cycling increases the stress on the cardiovascular system and affects mental health. Weight cyclers are at risk for blood pressure fluctuations, heart rate fluctuations, unstable glucose, lipid and insulin levels, and other negative consequences.
Even diabetics, who are currently Mounjaro's only approved beneficiaries, are finding the drug inaccessible due to supply shortages, insurance denials and out-of-pocket costs.
“In both populations, two people are failing,” says Dr. Holly Lofton, director of the weight management program at NYU Langone Health. “They're failing because they don't have enough blood sugar control and they have increased fat cell volume, which means they have increased inflammation. Even if their diabetes stays in remission, it could still be doing them harm if they gain weight.”
For many people, this wonder drug is now all but unavailable.
“If they get people to start doing something that would be dangerous to stop, is that really an 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 those who cannot receive without a plan? [without] Make it possible for them to continue taking it? “
When Eli Lilly launched Mounjaro in May 2022, it used a coupon that would allow anyone with business insurance to buy Mounjaro for as little as $25 per month until July 2023, even if their business insurance Company does not cover. Huge demand — thanks in part to social media success stories, low costs, and telehealth companies more willing to prescribe Mounjaro off-label than traditional primary care physicians — has caught up to supply. In November, and without warning, Lilly then changed the terms of the coupon, leading to massive confusion and vitriolic encounters online and in pharmacies across the country.
“There was never an announcement of any kind from the manufacturer that there was a change in terms and conditions,” said Sarah, a Walmart pharmacist in Alabama. “I basically had to poke around online forums to figure out what was going on.”
Sara discovers Lilly's ‘new' coupon requires patient proof
T2D diagnosis. The new discount is up from $25 to $500, but only for those with Mounjaro insurance. Otherwise, this miracle drug will cost about $1,000 a month.
“The Lilly tirzepatide savings program is available only to commercially insured adult patients in the U.S. who have been diagnosed with type 2 diabetes and have prescribed tirzepatide within its marketing authorization (“on label”),” Eli Lilly Lilly's spokesman said. “We have strengthened this intended use by adding a patient certificate emphasizing the type 2 diabetes requirement on the savings plan page, and most recently, starting to change the terms and conditions of the plan again in November 2022 and January 2023.”
When their coupon suddenly expires, customers explode, begging Sara to find a way to keep the old coupon price. She understands patients' frustration with Eli Lilly and its insurers: “Don't they want to keep me diabetes-free?” they'll ask again and again.
“Patients feel like we fabricated the whole shortage,” said Matt, a pharmacist from Indianapolis, who works for a large retail pharmacy chain. “One woman said, ‘You won't let me take my medicine. You don't want me to have it.' And then she threatened to sue us.”
In the arena of Reddit and Facebook, obese patients and diabetics argue over who has more right to use Mounjaro.
“I don't like the outrage that a lot of the weight loss community is showing toward people with diabetes,” says Lauren Rogers, a diabetic from Wheeling, West Virginia. “They said, ‘We should lose weight, and Mounjaro won't help you control your blood sugar,' and ‘keep on some other diabetes drug.' It was really painful.”
Diabetics blame those who are obese for Mounjaro's supply problems, while those who suffer from obesity want to see it as a disease rather than some sort of moral failure. They hate hearing they don't deserve the drug and call Mounjaro a preventive drug. Obesity reduces quality of life and longevity, and has been linked to conditions such as diabetes, heart disease and certain cancers.
“Obesity is not a choice. Obesity is a complex, chronic, neurometabolic disease with well-defined pathophysiology,” said Dr. Ania Jastreboff, an endocrinologist and obesity medicine physician and scientist at Yale University, author of a paper showing Lead author of a paper on the superior efficacy of tirzepatide in obesity.
When someone takes an anti-obesity drug like Mounjaro, the amount of fat the body wants to keep is reregulated, often resulting in weight loss. “When you stop taking the drug, the protected fat mass re-gains and the weight comes back,” Jastreboff said. “In order to continue to maintain the new reregulated defensive fat mass and the weight loss, you have to keep taking the drug.”
“We are working hard to ensure that people with type 2 diabetes can continue to take their prescribed medicines as usual,” a Lilly spokesman said. “We remain committed to ensuring that people with type 2 diabetes who take tirzepatide (Mounjaro) get their medicine.”
Rogers had to stop taking Mounjaro for three weeks because of the shortage. “I was devastated and full of despair,” the 58-year-old said. “I put on a few more pounds, but to my surprise, when my [blood glucose] The numbers are out of control again. This was a wake-up call for me to realize that diabetes can make you sick. “
Amid all the complaints, Mounjaro looks like a gold mine. “We're modeling for 2024 where global sales will be $4.7 billion,” said Bank of America analyst Geoff Meacham. UBS analyst Colin Bristow predicts Mounjaro will become the best-selling drug of all time. “Our current Mounjaro sales estimate is about $30 billion by the end of the decade,” he said.
“Mounjaro is a game changer, that's not an exaggeration,” said Paul Ford, a 53-year-old former firefighter who lost 30 pounds and said he no longer needs to sleep on a CPAP machine. “I feel better. I haven't felt this way in years. If I had this feeling when I was a firefighter, I would last longer.”
Mounjaro is likely to become one of the most profitable drugs of all time, with the potential to fundamentally improve the lives of tens of millions of people. But for many of the drug's early adopters, Mounjaro's promise sent them into yet another round of weight gain, comorbidities and hopelessness.
“Knowing it's there but being out of reach is almost worse,” Kay said. “Lilly could have worked out some solutions for people who have already started using the drug.” Currently, she lives in uncertainty, with no guarantee that she will be able to get the drug again.
