Ottawa is spending $1.5 billion over three years to treat rare diseases

(Ottawa) Ottawa announces that it will spend up to $1.5 billion over the next three years to improve access to “effective and affordable” drugs for the treatment of rare diseases.

Posted at 7:29 p.m.

Jacob Serebrin

The Canadian Press

Federal Health Minister Jean-Yves Duclos announced Wednesday that up to $1.4 billion of this envelope will be used to help provinces and territories, “through bilateral agreements,” expand drug coverage. new and existing ones that treat rare diseases. And $33 million will go to Indigenous Services Canada to support eligible First Nations and Inuit patients with rare diseases.

Mr. Duclos wants to increase coverage of existing drugs and create a list of new and emerging treatments that would be subsidized relatively evenly across the country, eliminating the need for people to travel outside their home province. origin for treatment.

“The national strategy will increase and harmonize coverage of existing drugs; it will add coverage with emerging and new drugs; it will accelerate the ability to make important diagnoses, especially for children,” he told reporters in Montreal.

Although there are no cures for the majority of rare diseases, those that do exist are often expensive – ranging from $100,000 to $2 million a year – and coverage can vary from province to province, a reminded Mr. Duclos.

“Canadians need better access to affordable prescription drugs; for some, paying for essential medication is an impossible choice between managing their health care situation and paying day-to-day bills,” said Minister Duclos, adding that he had heard “heartbreaking stories” from families who considered moving to another part of the country for treatment.

Some 9,600 people might benefit from the new funding, including 4,500 children, says Mr. Duclos. About one in 12 people has a rare disease, according to Health Canada.

Treatments for rare diseases represent regarding 10% of the total cost of drugs in Canada, adds Mr. Duclos. “The cost of drugs for rare diseases is also rising very rapidly. Over the past 10 years, it has increased by an average of 32%. So we see where we are going,” he explains.

The president of the Regroupement québécois des Maladies Orphanes (RQMO), Gail Ouellette, says the announcement will give people hope that they will be able to access treatments no matter where they live in Canada.

During the press conference, Mr. Ouellette said that people with rare diseases face many obstacles in the health care system, including the time required to obtain a diagnosis and the high costs of treatment.

“But one of the worst things for these people is to know that a drug exists for their condition, but not to have access to it, to know that it is authorized by Health Canada itself, and that people like them have access elsewhere in the world or in other provinces, but not them,” she says.

Among the founders of the RQMO were people with ataxia, a condition that causes loss of muscle control; Morquio syndrome, a genetic condition that affects the growth of a child’s bones and organs; and Fabry disease, a genetic condition that can lead to heart and kidney problems.

Durhane Wong-Rieger, CEO of the Canadian Organization for Rare Disorders, said at the press conference that the announcement recognizes the importance of early access to effective and promising drugs for patients “but also the need for early diagnosis and treatment, preferably before patients are seriously affected”.

The new funding includes $20 million over three years to gather evidence on drug safety and effectiveness, while an additional $32 million will be used over five years to fund rare disease research and establish a trials network clinics.

M^me Wong-Rieger said she’s thrilled to see the funding for research, as only regarding 5% of rare diseases have effective treatment.