Canada and Nova Scotia Sign $39 Million Agreement to Improve Access to Rare Disease Drugs
The Government of Canada and Nova Scotia have signed a bilateral agreement investing over $39 million to enhance access to drugs for rare diseases. The deal funds six specific medications and supports screening initiatives under the National Strategy for Drugs for Rare Diseases.
On March 20, 2025, the Government of Canada and Nova Scotia signed a bilateral agreement committing more than $39 million to improve access to drugs for rare diseases. This initiative is part of the broader National Strategy for Drugs for Rare Diseases, which was supported by a federal investment of up to $1.5 billion announced in March 2023.
The new agreement specifically funds six drugs: Poteligeo, Oxlumo, Epkinly, Welireg, Yescarta, and Koselugo. These treatments address various rare conditions, with annual costs ranging from $100,000 to more than $4 million for innovative therapies. For example, in Nova Scotia, the first treatment cost for Poteligeo is $35,000, while subsequent cycles are $17,000. The first adult treatment for Oxlumo costs $1.7 million, and the pediatric version costs $500,000. Other notable costs include $18,000 per 28-day cycle for Welireg, $485,000 for a single infusion of Yescarta, $268,678 annually per patient for Koselugo, and $14,000 for the first 28-day cycle of Epkinly.
In addition to funding these medications, Nova Scotia has committed to working with the federal government and other provinces to develop plans for improving screening and diagnostics for rare diseases. One in twelve people in Canada live with a rare disease, making early diagnosis and affordable treatment critical.
A significant development within this strategy is that Epkinly became the first drug to receive a time-limited reimbursement recommendation from Canada's Drug Agency (CDA-AMC). This mechanism aims to create earlier patient access to promising new drugs. The agreement seeks to reduce financial barriers for patients requiring expensive rare disease treatments and enhance early diagnosis capabilities across the province.