(ID 327033419 © Yuri Arcurs | Dreamstime.com)

By rdnewsNOW Staff

$162M JOINT INVESTMENT

Governments of Canada and Alberta partner to improve access to rare disease medication and screening

Dec 5, 2024 | 1:20 PM

The Governments of Canada and Alberta have announced a bilateral agreement investing over $162 million in an effort to improve access to new drugs for rare diseases and support enhanced access to existing drugs, early diagnosis and screening.

Under the National Strategy for Drugs and Rare Diseases agreement, Alberta will receive approximately $54 million annually for three years to fund access to new and emerging rare disease drugs and proven drugs, as well as diagnostics and screening.

“Having access to both innovative new drugs and proven long-standing drugs is an important way to support Albertans living with rare diseases,” said Alberta’s minister of health Adriana LaGrange. “This funding will improve Albertans’ access to potentially life-changing treatments using the province’s existing programs.”

The first new drugs to be provided in Alberta will be Poteligeo for the treatment of Sézary syndrome, a type of cancer that affects the skin and blood; Oxlumo for the treatment of hyperoxaluria type 1, which can lead to kidney stones and kidney damage; and Epkinly for the treatment of large B-cell lymphoma, which would affect several organs including the spleen, liver or bone marrow.

Alberta government officials report that Sézary syndrome affects about one in 10 million people annually; primary hyperoxalurias type 1 affects less than three people per one million; and B-cell lymphoma affects about seven in 10,000 people annually. About 30 Albertans are expected to be eligible for these drugs annually once they are added.

As a part of the agreement, up to 10 per cent of the funding will be used to improve screening and diagnostics for rare diseases in the province, including through the Alberta Newborn Screening Program. This program was recently expanded to include four new conditions, bringing the total number of conditions screened for to 22.

Representatives of Alberta say this earlier expansion of the Alberta Newborn Screening Program made it one of the most comprehensive in Canada and made the province the first in Canada to screen for congenital cytomegalovirus, argininosuccinic aciduria, guanidinoacetate methyltransferase deficiency and mucopolysaccharidosis type 1.

From 2023-2024, Alberta spent $130 million on rare disease drugs. The Government of Canada says one in 12 Canadians live with a rare disease, which often requires unaffordable treatment.

“Reaching this agreement is another step toward building a stronger public health system for Albertans. By investing in drugs for rare diseases, this agreement will improve affordability and access to medications, early diagnosis, and screening, so that people in Alberta with rare diseases have the best health outcomes possible,” commented Canada’s minister of health Mark Holland.