Edward Gillen, 59, woke up one May morning last year and noticed a speck in his eye.
The Massachusetts dad of four and beloved softball coach was just about the retire. Meanwhile, his sight was getting worse by the day. He desperately tried to nail down the cause quickly, but his vision loss deteriorated even faster.
“It was Memorial Day weekend, and by June 1st, I was blind,” Gillen told the The U.S. Sun. After undergoing MRIs, CT scans and an exam from a neuro-opthalmologist, he got an answer.
Doctors told him his vision loss was nonarteritic anterior ischemic optic neuropathy (NAION), linked to the Ozempic he’d been on for about a year to treat his diabetes.
“You don’t accept it. You don’t believe it. You’re just, ‘What the heck is going on?’” Gillen said. He’s trying to relearn all aspects of daily life as a blind person. “Cooking, plating food, eating food, trying to sit at the table. You can’t go outside.”
Now, he’s joining more than 200 other lawsuits against GLP-1 makers, alleging the drug caused NAION, a sudden and irreversible vision loss.
“I knew there were some [side effects]. Because you hear it on the commercials, you hear an advertiser, your doctor tells you them,” Gillen told Boston 25 News. “But not this. Not this.”
Do GLP-1s cause NAION?
Like Gillen, people with NAION usually notice they’re losing vision after waking up. It’s painless and sudden, and more commonly only affects one eye.
Experts compare the condition to a “stroke” where blood flow to the optic nerve is blocked, starving and killing the fibers of the nerve. It’s still a rare condition that scientists don’t fully understand.
This kind of damage to the nerve is generally irreversible. There is no treatment available.
We are just learning about GLP-1’s potential connection to this condition. A 2024 study found that taking semaglutide, sold as Ozempic, Wegovy and Rybelsus, was associated with an increased risk of NAION. A July study confirmed this association, though authors emphasized risk is low.
In May, the North American Neuro-Ophthalmology Society and the American Academy of Ophthalmology concluded “the overall magnitude of the risk of NAION remains low.”
“While many report a small possible increased risk of NAION in patients taking GLP-1 RAs such as semaglutide, some studies report no correlation,” they wrote.
Part of the difficulty with teasing out whether GLP-1s are to blame is that the people taking the meds are often at a much higher risk of NAION before taking the drug. Risk factors for NAION include diabetes, obesity, hypertension, elevated cholesterol, heart disease and sleep apnea.
Hundreds plaintiffs sue over vision loss
There are over 200 lawsuits alleging that GLP-1 drugs caused NAION now pending in federal court. Plaintiffs are suing Novo Nordisk, which makes Ozempic, Wegovy, Rybelsus and Saxenda; and Eli Lilly, which makes Trulicity, Mounjaro and Zepbound.
Plaintiffs say that manufacturers should’ve known about the risk and didn’t adequately warn them, and that the drugs are defectively dangerous.
“Novo believes the personal injury lawsuits filed in the U.S. are without merit and we are defending them in court,” Liz Skrbkova, the head of US media and stakeholder relations at Novo, said in a statement to the U.S. Sun.
She added that patient safety is a “top priority” for the company and that semaglutide, the drug Gillen took, has a “well-established safety profile,” supported by “robust clinical development programs, with exposure from post-marketing use of over 58 million patient-years across oral and injectable formulations in obesity and type 2 diabetes.”
Meanwhile, Gillen’s community is raising money for Coach BlindEd Foundation, which aims to “support individuals who are blind or visually impaired, raise awareness about vision loss, and help fund critical research.”
