Province looking to improve access to medicine for rare diseases

By ANNA SMITH Local Journalism Initiative on December 6, 2024.

asmith@medicinehatnews.com

The Government of Alberta is starting a process to make treatments more accessible for those who have rare diseases and conditions.

Hundreds of rare diseases currently exist across Canada, impacting the lives of many Albertans. However, only a small percentage of those conditions have treatments available, often leaving Albertans with rare diseases with limited or unaffordable options.

Recognizing the importance of providing the most effective, accessible drug treatments possible, the province is expanding its comprehensive rare disease coverage, which includes more than 100 drugs. Alberta’s government has also entered into a bilateral agreement with the federal government under the National Strategy for Drugs for Rare Diseases.

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

Under the agreement, Alberta will receive approximately $54 million annually for three years for new and emerging rare disease drugs and proven drugs, as well as diagnostics and screening.

The first new drugs that will be provided are Poteligeo, for the treatment of Sézary syndrome, Oxlumo for the treatment of hyperoxaluria type 1 and Epkinly for the treatment of large B-cell lymphoma.

These conditions are very rare, with approximately 30 Albertans will be eligible for these drugs annually.

As part of the agreement, up to 10 per cent of the funding will be used to improve screening and diagnostics for rare diseases in Alberta, including through the Alberta Newborn Screening Program.

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