Amid compounding crackdown, US patients struggle as weight-loss drug discounts fall short

Deadline for halting sales of compounded Wegovy passed on ThursdayPatients stockpile copies, take other stepsExperts warn against self-adjusted doses at homeBy Sriparna Roy May 23 (Reuters) - After years of easily available, cheap copies of Eli Lilly's and Novo Nordisk's highly effective weight-loss drugs, some U.S. patients say they are unwilling to pay more and are pursuing alternatives to get around the regulatory deadline for compounding pharmacies to stop making them.The U.S. Food and Drug Administration has cracked down on compounded drugs, which were readily available while the patented ones were in shortage, and many are worried they will lose access to the treatments that have given them hope and changed their lives, according to interviews with 10 patients."I do not have the money to be spending $350, and that's the entry-level dose," said Amanda Bonello, a 36-year-old based in Iowa, referring to the price that Lilly charges for the 2.5 mg dose."It would not be easy thinking about the Christmas presents that would be missed that year and other opportunities that my family could potentially have." The branded drugs cost more than $1,000 per month though both Lilly LLY.N and Novo NOVOb.CO charge less for purchases on their websites - as low as $349 - and at some pharmacies. On Thursday, Novo introduced a one-month price of $199, coinciding with the deadline for halting sales of compounded versions. Health insurance can cover much of that cost, but most Americans are not covered for these drugs. The average price on telehealth sites for compounded drugs is about $200.For two years, patients have turned to compounded versions, in which pharmacies mix the drug ingredients, while Wegovy and Zepbound were hard to get. The FDA set a May 22 deadline for large compounding facilities to stop producing versions of Novo's drugs, having already done so for Lilly's.Patients told Reuters they have turned to stockpiling the compounded drugs or prescription hopping, a practice in which they go from one provider to another to collect these drugs, or source the drugs from countries like Canada.Patients are saving the stocked up drugs in their refrigerators, and some are tailoring the dose to make them last longer, even beyond their expiration date."It's been a roller coaster, and it's been so stressful that so many people have just stuck their heads in the sand while others have been stockpiling to prepare," said Bonello, who started building up a one-year stockpile in October 2024.A Novo Nordisk spokesperson said the company would continue to develop solutions to make Wegovy more accessible, pointing to its direct-to-consumer website as an example. "Unfortunately, today people living with obesity continue to fight stigma and bias within a complex healthcare system that still denies coverage to medically-prescribed and effective treatments," the spokesperson said. "We recognize that affordability challenges are real for many patients and not all situations are the same," the spokesperson said in an emailed statement. Eli Lilly did not respond to a Reuters request for comment on this story.LIMITED OPTIONSThree patients told Reuters they would consider buying the brand-name drugs from the manufacturer's websites, if they were more affordable, but without insurance coverage it meant they still had to sacrifice elsewhere."They are still kind of leaps and bounds from where the price of compound is, and they just still don't quite fit into my budget at this time," said 32-year-old Zach Niemiec, who is based in Colorado, and works in the nutrition industry.Telehealth companies that sell compounded weight-loss drugs are still trying to figure out how to stay in the market. Noom, for instance, is pushing a new regimen it says would fall under a personalized dosage exception. Veronica Johnson, a Chicago-based obesity medicine physician at Northwestern Medicine, advised against the at-home adjustments patients are making."The stockpiling and trying to do your own dosing if you're not under, and even if you are under, the medical expertise of someone, puts a lot more harm to potential issues going forward," said Johnson.