Amylyx Pharmaceuticals is helping patients follow the clues to uncover the mystery of rare weight-loss surgery complication post-bariatric hypoglycemia (PBH) with the launch of a new patient education website.
Some 160,000 people in the U.S. live with PBH, according to Amylyx, with the condition typically setting in between one and three years after bariatric surgery. The disease can cause severe hypoglycemia and manifest in seizures, impaired cognition and loss of consciousness, which can result in disability. There are currently no drugs approved to treat the condition, which Amylyx is angling to change through its investigational GLP-1 avexitide.
Ahead of the drug’s expected phase 3 readout during the third quarter of this year, the company looks to help potential patients unravel the mystery of their symptoms with the new site, “Uncover PBH.”
The website is full of resources to help potential patients navigate their PBH journey, featuring detailed information on recognizing and understanding the disease, approaching a diagnosis and managing symptoms. Adorned with cards displaying symptoms and illustrations as “clues,” the site also features quotes and videos from people living with PBH, along with FAQs and downloadable discussion guides and trackers.
The education push grew out of Amylyx’s research into the patient community, which suggested a potential disconnect between experiencing symptoms and linking them to a diagnosis, as well as a need for doctors to have the “right tools” and information to help patients, co-CEO Josh Cohen explained in a recent interview.
In PBH, “there hasn’t been the same sort of central resources for people that one hopes exists in rare disease,” co-CEO Justin Klee added in the joint interview. Some signs and symptoms can be misattributed to other conditions, and many patients are bedbound by extreme fatigue, making it difficult for them to advocate for themselves or educate others. Amylyx hopes it can “be a very helpful partner.”
The company estimates some 8% of people who get bariatric surgery go on to develop PBH, but for those 8%, “it really can take over their lives,” Cohen noted.
“To have these symptoms and not know what’s causing them just makes it even worse,” Cohen explained, adding that some patients have relayed that just getting the diagnosis gives them “a sense of control over their lives.”
Beyond empowering patients and making it easier for them to explain the disease to physicians or family members, Amylyx’s PBH resources and awareness efforts could also prove valuable in medical emergencies. For example, if a PBH patient is hospitalized with severe hypoglycemia, physicians will often presume and treat for a diabetic episode, given the much larger awareness and understanding of diabetes compared to PBH.
In creating the website, the Amylyx team sought to be as authentic as possible, incorporating quotes and photos from real patients because “the people who are the most expert at any disease or condition are the people who live with it every day,” Klee said.
Although disease education websites can sometimes feel “very fearful” because of a condition’s “scary” manifestations, Amylyx aimed to make the site simple and approachable. That was especially important because patients often develop PBH after undergoing weight-loss surgery, a “life-changing treatment” intended to offer a “new lease on life,” Klee said. The playing cards featuring disease “clues” help distill complex information into simple imagery, the co-CEO explained.
“What we’ve heard from people is that they think we got it right,” Klee said, referring to the website. “Which makes us very proud.”
Klee and Cohen founded Amylyx in 2013 with an initial focus on amyotrophic lateral sclerosis (ALS). After commercializing its ALS med Relyvrio and famously voluntarily pulling it from the market in 2024 after a confirmatory trial failure, the company has maintained a dedication to diseases with high unmet needs, such as PBH and Wolfram syndrome.
“We only work in areas where there’s either nothing for people or substantially inadequate [options], and what we find is that there are so many gaps that exist,” Klee said. “For us, so much really starts with education, and so we do view it as our responsibility to try to educate broader communities about the condition, because that’s where everything starts.”