Eosinophilic esophagitis is a rare, lifelong disease causing severe digestive issues. Advocates urge action for medication coverage.
Imagine eating a cactus and feeling its spines painfully pierce your throat with every swallow. This is life with eosinophilic esophagitis, or EoE, where having a meal is just as excruciating. Sometimes, you choke on food or feel as if it’s stuck in your throat. You may also experience sharp, ongoing esophageal and stomach pains, chronic chest pain, heartburn, acid reflux, bloating, regurgitation, vomiting, fatigue, isolation, and anxiety.
Often beginning in childhood, EoE is a rare, lifelong disorder defined by excessive eosinophils (a type of white blood cell) in the esophagus, leading to inflammation. Left untreated, those affected frequently end up in the ER seeking help to breathe and receive nourishment.
Initial treatment involves a severely restrictive food elimination diet. It also requires regular invasive and uncomfortable endoscopies and biopsies.
There are only two medications approved to treat EoE: Jorveza™ (budesonide orodispersible tablet), which received the first Health Canada approval in 2019 under priority review due to the high unmet need, and Dupixent® (dupilumab), in 2023. Jorveza™ was the first drug launched globally for EoE, and more than 15 OECD countries already cover it.
Fighting for medication coverage
Despite this, stubborn public payers collectively, under the pan-Canadian Pharmaceutical Alliance (pCPA), refuse to cover this novel product, despite the low cost of Jorveza™ ($3,413 annually per patient before price reduction negotiations) and EoE being a rare disorder. In a letter to the Gastrointestinal Society on December 16, 2024, the pCPA’s acting CEO said, “The price proposed by the manufacturer [a small Canadian company] and the value of the drug were too far apart.” Our national health technology assessment body, Canada’s Drug Agency, has already recommended that the provinces cover this medication. So, what’s the holdup when there are no other clinically proven medications covered in Canada? The pCPA’s price reduction demands are unreasonable.
As a result, physicians often resort to concocting a complex mixture of off-label products (not approved for EoE) to reduce symptoms. These products come with side effects and do not address the root cause of inflammation. Dilation, which involves painful stretching of the esophagus, is another treatment.
Advocating for investment in effective treatments
“Without treatment, children and adults living with this incurable disease can experience permanent damage, malnutrition, and poor growth. This causes grief for the whole family. For once, a targeted, rare disease medication is available at an affordable price, allowing these individuals to have a simple meal without choking,” says Gail Attara, CEO of the Gastrointestinal Society. “Governments must invest in effective treatments to prevent future healthcare costs and truly care for the person. Lives depend on it. The federal commitment to the National Strategy for Drugs for Rare Disease has been gathering dust since March 22nd, 2023, including its goal to ensure uniform coverage. Public plan decision-makers have failed these vulnerable individuals. Shockingly, not even one public plan in Canada funds this low-cost, essential treatment. It’s time for real action.”
The Gastrointestinal Society is committed to improving the lives of people with gastrointestinal and liver conditions, including obesity, supporting research, advocating for patient access to healthcare, and promoting health.
Learn about EoE: badgut.org/eoe-patient-journey-video/.
