Feds, Alberta government agree to $162 million deal on rare disease drugs

The Canadian government said it and the Alberta government have reached a $162 million bilateral agreement to improve access to select drugs for rare diseases and to enhance access to existing ones, early access, and screening. Health Minister Mark Holland called this deal “a first step in funding for access for three different drugs as mentioned under the National Strategy for Rare Diseases and a co-ordinated national approach.” “Folks, we can’t afford the status quo,” said Holland at a Thursday press conference. “We know about 70% of chronic disease and illness is avoidable.” Holland said the Canadian and Alberta governments have reached agreements on working together with primary care and aging with dignity and is now doing one on drugs for rare diseases. He called on people to imagine a circumstance where they or a loved one receives a diagnosis for a rare disease. As he and Alberta Health Minister Adriana LaGrange have travelled across their jurisdictions and talked to people in that circumstance, he said it is a heavy load to metabolize. He said people should imagine having a conversation about the cost of medication and the financial hardship it could cause. While people have to deal with the difficulty from diagnoses, he said the financial stress they will face is unfair. He pointed out this agreement “is such an important step in making sure that the folks who are diagnosed with a rare disease get access to the medication that they need and that we have the right screening and treatment tools overall.” He noted 1 in 12 people suffer from a rare disease. When it comes to most people filling emergency rooms, hospitals, and healthcare facilities, he said they do not need to be there. He said the Canadian and Alberta governments have an opportunity to transform the healthcare system. Of course, he said transforming the healthcare system matters because of social justice and improving health outcomes. However, he said it can save costs and ensure it only focuses on what it has to. This would mean transforming the system into a prevention-based one rather than an illness-based one. He said Canada should measure its success by how long people live in good health. Right now, he said it is second in the G7 for this metric. Holland concluded by saying that transforming the healthcare system is a matter of productivity, cost avoidance, and an issue regardless of political stripe people can get behind. He said he was excited to work on this transformation with LaGrange. LaGrange started off the press conference by saying the first new drugs the Alberta government will be providing through the agreement are Poteligeo to treat Sezary syndrome, Oxlumo to treat hyperoxaluria Type One, and Epkinly for some types of lymphoma. “Along with the federal government and our provincial and territorial counterparts, we have worked together to compile a list of new and emerging rare disease drugs,” said LaGrange. “The list known as the Common Set is the result of more than a year of development to determine a small set of new drugs that will be cost shared and covered in a consistent way right across the country.” She said these three drugs have been approved for use in Alberta and were seen as a good fit under this agreement. By making this list, she said it will help inform future new drug approvals and increase benefits for all rare disease patients. Holland followed up by saying this agreement is a huge deal. “If you’re a patient with one of these rare conditions, having the support to get the medication you need is game changing,” he said. “You have to acknowledge there are things that don’t work about our health system and a lot of things that are phenomenal.” He spoke with Canadian residents Katie and Andrew, who had one of their children diagnosed with a rare illness and received free healthcare. Andrew said his sister lives in the United States, went through a similar situation, and experienced financial hardship over it. The Canadian government said in May it had obtained a bilateral agreement with the Alberta government to spend $627 million over the next five years to what it says will help Albertans age with dignity..Feds reach $627 million deal with Alberta government on seniors’ care .This funding built on the $1 billion bilateral agreement the Canadian government announced in December as part of a primary care plan. “Every Canadian deserves access to safe and high-quality healthcare at every stage of their lives,” said Holland.

Feds, Alberta government agree to $162 million deal on rare disease drugs

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