One in 12 Canadians is living with a rare disease.
A three-year, over $32 million agreement was signed today between the provincial and federal governments, that will make it more manageable for some.
For most people suffering from these diseases, the cost of treatment is unaffordable. This agreement will help make their treatments more affordable.
New Brunswick Health Minister John Dornan says four drugs were identified under the National Strategy for Drugs for Rare Diseases:
- 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; and,
- Welireg, for the treatment of treatment of von Hippel-Lindau (VHL) disease.
“Three are oncology drugs for rare cancers, as well as a fourth drug for a rare kidney disease. These drugs are very expensive. There are other drugs that are also very expensive, maybe not quite as much or maybe more. We have to start somewhere. We had to start somewhere. These are cancer drugs that we don’t easily have access to, “Dornan says.
In addition, New Brunswick is committing through this agreement to work with Canada and other provinces and territories on developing and implementing a plan for improving screening and diagnostics for rare diseases.
“The only way we get to the health system we deserve is one step at a time. This is an important step and it is an important step, but it’s not the full journey. We building one step at a time. Not only does this improve health outcomes, but it saves money,” says federal Health Minister Mark Holland.
The names of others will be published online on a drug-by-drug basis following price negotiations by the Pan-Canadian Pharmaceutical Alliance.
The announcement is part of the National Strategy for Drugs for Rare Diseases, which has committed up to $1.4 billion for bilateral agreements with provinces and territories to help patients with rare diseases have access to treatments as early as possible, for a better quality of life.
