Amylyx launches PBH education site ahead of avexitide phase 3 results

USA— Amylyx Pharmaceuticals has launched a new patient education website to help people recognize and understand post-bariatric hypoglycemia (PBH), a rare complication that can develop after weight-loss surgery.

An estimated 160,000 people in the U.S. live with PBH, according to Amylyx, with symptoms typically emerging one to three years after bariatric surgery.

The condition can cause severe hypoglycemia, potentially leading to seizures, impaired cognition and loss of consciousness.

No drugs are currently approved specifically to treat PBH.

Amylyx hopes to address this unmet need with investigational GLP-1 receptor agonist avexitide, which is undergoing clinical development.

 The company expects to report phase 3 results during the third quarter of this year.

Ahead of the readout, Amylyx has launched “Uncover PBH,” a website designed to help patients identify possible symptoms, understand the condition, seek a diagnosis and manage their symptoms.

The site uses cards featuring symptoms and illustrations as “clues” to explain PBH in accessible terms.

It also includes videos and accounts from people living with the condition, frequently asked questions, downloadable discussion guides and symptom trackers.

Addressing gaps in diagnosis

Amylyx developed the education initiative after researching the PBH patient community.

The research indicated that people may experience symptoms without recognizing that they could be linked to PBH.

It also highlighted the need for physicians to have better tools and information to identify and explain the condition.

“People who are the most expert at any disease or condition are the people who live with it every day,” said Amylyx co-CEO Justin Klee, explaining the company’s decision to incorporate patients’ experiences, photographs and comments into the website.

Co-CEO Josh Cohen said some patients struggle to connect their symptoms with a diagnosis, while others experience extreme fatigue that can leave them unable to advocate for themselves or educate family members and healthcare professionals.

Amylyx estimates that about 8% of people who undergo bariatric surgery develop PBH.

For those affected, the condition can significantly disrupt daily life, Cohen said.

A diagnosis can also provide patients with greater control and help them explain their symptoms to physicians and relatives.

The resources could be particularly useful during medical emergencies.

When a patient with PBH experiences severe hypoglycemia and requires hospitalization, physicians may initially suspect diabetes because they are more familiar with diabetic hypoglycemia than PBH.

Making complex information accessible

Amylyx designed the website to be approachable rather than frightening, despite the potentially serious consequences of PBH.

Klee said this was important because patients develop the condition after undergoing weight-loss surgery, which is often intended to provide a major improvement in quality of life.

The company used playing-card-style “clues” to simplify complex information and make the material easier to understand.

Klee and Cohen founded Amylyx in 2013, initially focusing on amyotrophic lateral sclerosis (ALS).

After commercializing Relyvrio for ALS and voluntarily withdrawing it from the market in 2024 following failure of a confirmatory trial, the company shifted its focus toward diseases with high unmet needs, including PBH and Wolfram syndrome.

“For us, so much really starts with education,” Klee said, emphasizing the company’s efforts to improve awareness of conditions where treatment options remain limited.