4 drugs for rare diseases to be covered under N.B. deal with federal government

Drug coverage for four drugs used to treat some rare diseases was announced in Fredericton on Wednesday under a $32-million deal signed by the federal and provincial governments.

Under the agreement, New Brunswick will get $10.8 million a year for the next three years, said provincial Health Minister John Dornan.

"As an endocrinologist, I have seen first hand how devastating it can be for patients with a diagnosis of a rare disease," said at the Stan Cassidy Centre for Rehabilitation.

"Too often, their diagnosis might mean that they have more limited treatment options, whether this be because of the complexity of their disease, limited research or barriers to medication. Cost is one of those barriers to drugs to treat rare diseases."

According to the Canadian Organization for Rare Disorders, about one in 12 Canadians is affected by a rare disease, defined as one found in fewer than one in 2,000 people. The group's website says there are 7,000 known rare diseases in Canada. 

The agreement between New Brunswick and Ottawa includes coverage for four drugs — two lymphoma drugs and two drugs for rare genetic conditions. 

Individual provinces have been signing agreements with the federal government under a $1.4 billion rare disease drug program. Each province can elect to make certain drugs, chosen from a federal list of common drugs, available to  its residents. 

WATCH | 'It could happen to anyone,' federal health minister says of rare diseases:

N.B. getting $32 million for rare disease drugs

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Federal Health Minister Mark Holland joined N.B. Health Minister John Dornan in Fredericton Wednesday to announce new funding for drugs to treat rare diseases, and infrastructure to screen those diseases.

New Brunswick chose Poteligeo, often used for mycosis fungoides or Sézary syndrome — two types of cutaneous T-cell lymphoma; Oxlumo, often used for primary hyperoxaluria type 1 — a genetic condition that causes high oxalate levels in urine; Epkinly, often used for relapsed or refractory diffuse large B-cell lymphoma; and Welireg, often used for Von Hippel-Lindau disease — a genetic disorder that causes tumour and cysts to grow in certain parts of the body.

The announcement in New Brunswick came one day after an open letter was published by the Canadian Organization for Rare Disorders renewing its call for a rare disease strategy.

The letter criticizes the national strategy for drugs for rare diseases because it doesn't require provinces to cover more than the elected common drugs.

"There is high probability that the $1.4 billion will result in very little net sustainable benefit for persons living with rare disease and their families, unless governments take a different course of action now," the letter read.

The Canadian Journal of Health Technologies has listed prices for the four drugs chosen by New Brunswick. The journal says: 

• Poteligeo is expected to cost about $35,258 in the first treatment cycle.

• Oxlumo is expected to cost about $1,743,495 for adults in the first year, and $581,132 for pediatric patients.

• Epkinly is expected to cost about $14,320 for the first cycle.

• Welireg is expected to cost about  $17,920 per 28 days.

Dornan said these four drugs are only the start.

"These four that are identified today are expensive drugs that we will be able to use very soon, but there's lots of others there that will demand similar attention," he said. 

The letter from the Canadian Organization for Rare Disorders said a national rare disease strategy would ensure funding from the drug specific strategy "has optimal sustainable impact."

Federal Health Minister Mark Holland, who was in Fredericton for the announcement Wednesday, said the government is taking it one step at a time.

"I think part of the reason that we're not seeing change fast enough is because there's often this binary question of, you know, 'do nothing or do it all,'" Holland said. "So as a result, we end up in this kind of purgatory state where things get frozen.

"So the approach that I tried to take over the last year and a half as health minister is, you know, frankly, to hold the pain of going in and meeting with people who deserve help and aren't getting it yet, and accept that the only way that we get to the health system that we deserve is one step at a time."

The agreement between New Brunswick and Ottawa was officially signed on Dec. 19 and went into effect on that day.

Pharmacare deal still in works, not signed yet

Holland spoke to Information Morning Fredericton about efforts to get pharmacare off the ground.

Last fall, the federal pharmacare legislation was passed, laying the groundwork for Ottawa to begin covering the cost of contraceptive and diabetes drugs and devices and Holland is still working to sign agreements with provinces and territories.

But so far, only a memorandum of understanding has been reached with British Columbia. 

Holland said are not a quick process, but in New Brunswick, Dornan and Premier Susan Holt are "working as fast as they can."

"When you bring these things in, you have to make sure that you're going to be able to get drugs to people, that we have the agreements, that you know how the money's going to flow, how it's going to be operationalized," said Holland.

"My ambition here isn't for, you know, for a short time to have these drugs flow. My ambition is for this to be something that we do right, so that it sets the foundation forever."