GLP-1s are prescribed for a growing number of conditions and come with a range of side effects, including those that lawsuits say are life-altering or fatal. Is this common? It’s hard to know.
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More than one in ten Americans take a GLP-1 drug for weight loss. This is according to a recent Gallup poll. These drugs are prescribed for a growing number of conditions and cause a range of side effects, including some that lawsuits allege are life-altering. Is this common? Well, that’s hard to know, as NPR’s Yuki Noguchi reports.
YUKI NOGUCHI, BYLINE: Todd Engel operated heavy machinery around the warehouses and highways of suburban Maryland for four decades.
TODD ENGEL: Different types of forklifts, rubber wheel 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 like an eyepatch was covering his right eye.
T ENGEL: I didn’t see anything. Everything was dark. It was black.
NOGUCHI: Engel and his wife, Shelley, learned it was optic neuropathy, NAION for short, a small blockage of blood flow to his eye. The doctor listed all the known causes. Shelley Engel asked specifically about Ozempic.
SHELLEY ENGEL: We even said to the doctor, do you think that could be the cause? Do you know? And he says we haven’t heard anything.
NOGUCHI: A month later, a medical journal published research showing higher rates of NAION in diabetic patients taking Ozempic, but neither Engel nor his doctor knew about it. So Engel continued to take weekly injections until his left eye turned black, just like the other the year before. Engel mourns everything he has lost: the ability to work or walk on the beach without help.
T ENGEL: Being able to play any type of ball with my grandchildren – I can’t do those things anymore. I will never, ever be able to see my wife’s beautiful face every day.
NOGUCHI: Engel is suing Ozempic’s maker, Novo Nordisk, in part because there was no warning about NAION. The question before the court is whether the GLP-1 drugs caused the harm, and that requires information on the frequency of these side effects, broken down by things like patient demographics and co-occurring conditions. But there is a shortage of such reliable data.
Novo Nordisk spokespeople say NAION and other serious conditions are extremely rare in clinical trials. It continues to collect and share data with the Food and Drug Administration, which has not requested changes to warning labels. But lawyer Jonathan Orent says drugmakers should update their warnings to doctors and patients, as they have done in Europe, even if the conditions are rare.
JONATHAN ORENT: You’ll never have the population size to detect rarer events in a clinical trial. You’ll also never have the diversity of your actual population.
NOGUCHI: Orent is a lead attorney in two major nationwide prosecutions of consolidated cases alleging harm from GLP-1 drugs, including 247 plaintiffs with NAION and more than 4,000 with other serious digestive problems 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 baseless. The FDA has a database that tracks side effects reported by doctors, patients or pharmaceutical companies, but they are voluntary and the agency does not verify them. NPR has found about 2,000 cases of pancreatitis and a thousand cases of optic neuropathy linked to GLP-1 since 2024, out of nearly 190,000 incidents reported during that period. Adding to the challenge is the rise of online sales, where GLP-1s are so widely marketed. Pharmacist Robert Miller of the West(ph) Texas Poison Control Center says that leads more people to seek advice about side effects from centers like his rather than their doctors.
ROBERT MILLER: How often do you use drugs on Instagram? So this is definitely something new. So, is there a doctor motivated to report side effects or someone the patient feels they can report side effects to?
NOGUCHI: Hearings are underway in lawsuits in which plaintiffs like Engels are seeking damages from drugmakers. But Shelley Engel also wants more warnings about side effects, which she says could have helped her husband avoid blindness.
S ENGEL: Todd was, like, an outgoing, lively guy. And now when we go out, he often just sits there quietly.
NOGUCHI: And needs to be escorted to the bathroom.
S ENGEL: Like, it’s humiliating.
NOGUCHI: And she just wishes this could have been avoided.
Yuki Noguchi, NPR News.
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