Ottawa, N.B. announce $32M to improve access to drugs for rare diseases

New Brunswick and Ottawa are spending $32 million on medication for rare diseases.

The federal and New Brunswick governments are spending more than $30 million to improve access to medications for New Brunswickers with rare diseases.

One in 12 people in Canada live with a rare disease, according to a news release from the Government of Canada. For most people living with these diseases, the cost of treatment is unaffordable.

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“Individuals diagnosed with a rare disease face numerous challenges when seeking diagnoses and treatment,” said John Dornan, New Brunswick’s minister of health.

“With this additional funding, we can provide New Brunswickers with improved access to new and existing drugs for rare diseases.”

The bilateral agreement announced Wednesday will see $32 million allocated to improving access to selected new drugs for rare diseases. Part of the agreement also supports enhanced access to existing drugs, early diagnosis and screening.

Phase 1 of the agreement is to provide funding for the following four drugs:

• Poteligeo for the treatment of mycosis fungoides or Sézary syndrome
• Oxlumo for the treatment of hyperoxaluria type 1
• Epkinly for relapsed or refractory diffuse large B-cell lymphoma
• Welireg for the treatment of von Hippel-Lindau (VHL) disease

Other drugs on the common list will be published online on a drug-by-drug basis following the pan-Canadian Pharmaceutical Alliance price negotiations for each drug.

New Brunswick is also committing to working with Canada and other provinces and territories on developing and implementing a plan for improving screening and diagnostics for rare diseases.

Innovative treatments for rare diseases can cost anywhere from $100,000 to more than $4 million each year.

For more New Brunswick news, visit our dedicated provincial page.