Rare disease drugs a go as Alberta moves on dental and PharmaCare

Article content

Alberta can administer the federal dental plan if it wishes, and a Pharmacare deal is near, said federal Health Minister Mark Holland in a joint announcement Thursday with Alberta Health Minister Adriana LaGrange.

Article content

Article content

The most immediate news was inking a $162-million deal to bring three drugs online to treat Albertans with rare illnesses.

Alberta spent more than $130 million on more than 100 drugs in 2023-24 to treat “hundreds to thousands” of Albertans ill with rare diseases.

Article content

An estimated one in 12 Albertans suffers from a rare disease.

“It’s an incredibly heavy load to metabolize,” said Holland.

“And imagine, on top of that, that you have to have a conversation about the cost of your medication, having to face a cost that is going to cripple your family. You have to sell your home or put your family in a precarious situation, maybe not be able to send one of your children to school. The stress of having to deal with that financially on top of a difficult diagnosis simply is unfair,” he said.

Thursday’s bilateral agreement with the federal government under the National Strategy for Drugs for Rare Diseases will provide $54 million annually for three years for new and emerging rare disease drugs and proven drugs, as well as diagnostics and screening.

In March 2023, the Government of Canada announced the strategy, with up to $1.4 billion available over three years to provinces and territories through bilateral agreements.

Holland touted LaGrange as an excellent partner for forming agreements between the provincial and federal governments.

Article content

Article content

“First, we had an agreement on working together dealing with primary care, where we’ve seen huge progress in Alberta in terms of the number of physicians and nurses. We’ve been able to work together on that, on aging with dignity, and now on drugs for rare diseases,” Holland said.

The first three drugs added to the new list are Poteligeo, which treats Sézary syndrome, a cancer affecting the skin and blood that affects one in 10 million people annually.

Oxlumo can treat hyperoxaluria type 1, which affects fewer than three in one million and can lead to kidney stones and kidney damage. Epkinly treats large B-cell lymphoma, affecting organs like the spleen, liver or bone marrow for seven in 100,000 people each year.

With the addition of these drugs to the list, approximately 30 Albertans will be eligible for the three drugs annually, the UCP government news release said.

Dental and PharmaCare still in the works

Still in the works are the federal dental plan and PharmaCare.

Alberta and Ottawa are working to reach an agreement on Pharmaare, LaGrange said, citing other recent agreements as signs of ability to agree.

Article content

“There’s a lot of behind the scenes work that has to happen,” she said.

In regards to the administration of the PharmaCare program, every province is different in terms of what it might need and its formulary, Holland said.

“When we announced the memorandum of understanding with British Columbia, as an example, they were able to take some of the money that they were saving through this program and partnership to help us announce something that was unexpected, which was menopause replacement therapy for women,” he said.

Ottawa is OK with Alberta wading into administering dental care, Holland said.

“I know Alberta has an interest in managing the dental care program. I have no problem with that whatsoever, but we agree on the idea that people need to be connected to care,” Holland said, citing a visit to Gander, N.L., where oral cancer was detected in dental care patients.

“Those are oral cancers that would not have otherwise been identified, and you can imagine what would have happened to those folks if they hadn’t been identified,” he said.

He touted other working agreements forged between the Alberta Health Ministry and the federal health agency.

Article content

“Adriana and I had a great conversation today on this. We continue to talk about how essential it is for us to work together. I’m so committed to that, because Canada has an incredible advantage, and we shouldn’t lose sight of that,” he said.

[email protected]

Bookmark our website and support our journalism: Don’t miss the news you need to know — add EdmontonJournal.com and EdmontonSun.com to your bookmarks and sign up for our newsletters.

You can also support our journalism by becoming a digital subscriber. Subscribers gain unlimited access to The Edmonton Journal, Edmonton Sun, National Post and 13 other Canadian news sites. The Edmonton Journal | The Edmonton Sun

Article content