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More than 1 in 10 Americans are taking a GLP-1 drug for weight loss. That's according to a recent Gallup poll. These drugs are prescribed for a growing number of conditions, and they come with a range of side effects, including some that lawsuits allege are life-altering. How common is this? Well, it's hard to know, as NPR's Yuki Noguchi reports.
YUKI NOGUCHI, BYLINE: Todd Engel operated heavy machinery around warehouses and highways in suburban Maryland for four decades.
TODD ENGEL: Various types of forklifts, rubber tire loaders, rollers.
NOGUCHI: In early 2023, his doctor put him on Ozempic, a GLP-1 for diabetes. That winter, on New Year's Eve, Engel woke up feeling as if a patch covered his right eye.
T ENGEL: I couldn't see anything. It was all dark. It was black.
NOGUCHI: Engel and his wife, Shelley, were told it was optic neuropathy, NAION for short, a tiny blockage of blood flow to his eye. The doctor listed all known causes. Shelley Engel asked specifically about Ozempic.
SHELLEY ENGEL: We even said to the doctor, do you think that this could cause it? Do you know? And he's like, we have heard nothing.
NOGUCHI: A month later, a medical journal did publish research showing higher rates of NAION among diabetic patients taking Ozempic, but neither Engel nor his doctor were aware. So Engel kept taking weekly shots until his left eye went black just as the other had the year prior. Engel mourns all he's lost - the ability to work or walk the beach unaided.
T ENGEL: Being able to play any kind of ball with my grandchildren - I can't do these things anymore. I will never, never be able to see my wife's beautiful face every day.
NOGUCHI: Engel is suing the maker of Ozempic, Novo Nordisk, in part because there was no warning about NAION. The issue before the court is whether the GLP-1 drugs caused the harm, and that requires information about the frequency of such side effects broken down by things like patient demographics and co-occurring conditions. But there's a dearth of such reliable data.
Spokespeople for Novo Nordisk say NAION and other serious conditions are exceedingly rare in clinical trials. It continues to collect and share data with the Food and Drug Administration, which has not requested warning label changes. But Attorney Jonathan Orent says drugmakers ought to update warnings to doctors and patients, as they have in Europe, even if the conditions are rare.
JONATHAN ORENT: You're never going to have the population size to detect rarer events in a clinical trial. You're also never going to have the diversity of your real-world population.
NOGUCHI: Orent is a lead attorney on the two major national lawsuits of consolidated cases alleging harms from GLP-1 drugs, including 247 plaintiffs with NAION, and more than 4,000 with other serious digestive conditions like pancreatitis or gallstones.
ORENT: These warnings would have made a difference in the lives of real people.
NOGUCHI: Novo Nordisk says the cases are without merit. The FDA has a database tracking side effects reported by doctors, patients or drug companies, but they're voluntary, and the agency doesn't verify them. NPR found about 2,000 pancreatitis and a thousand optic neuropathy cases linked to GLP-1s since 2024 out of nearly 190,000 incidents reported over that time. The boom in online sales, where GLP-1s are so heavily marketed adds to the challenge. Pharmacist Robert Miller at the West (ph) Texas Poison Control Center says that's driving more people to seek advice about side effects from centers like his instead of their doctors.
ROBERT MILLER: How often do you get drugs on Instagram? So that's definitely a new thing. So is there even a physician who's motivated to report for side effects or someone the patient feels they can report those side effects to?
NOGUCHI: Hearings are ongoing in the lawsuits where plaintiffs like the Engels are seeking damages from drugmakers. But Shelley Engel also wants more side effect warnings, which she says might have helped her husband avoid blindness.
S ENGEL: Todd was, like, an outgoing, vivacious kind of guy. And now, when we go out, he sits a lot of times quietly.
NOGUCHI: And needs escorting to the bathroom.
S ENGEL: Like, it's humiliating.
NOGUCHI: And she just wishes it could have been prevented.
Yuki Noguchi, NPR News. Transcript provided by NPR, Copyright NPR.
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