New National Strategy Improves Access to Affordable and Effective Drugs for Rare Diseases

On March 22, the Honourable Jean-Yves Duclos, Minister of Health, announced a new strategy to improve access to affordable and effective drugs for Canadians with rare diseases. The new measures will increase access to, and the affordability of, effective drugs for rare diseases, marked by an investment of up to $1.5 billion across three years.

It is highly welcome news for those living with a rare disease, including Paroxysmal Nocturnal Haemoglobinuria (PNH), and their support systems. In Canada, one out of every 12 people has a rare disease, and the effects of these diagnoses are felt not only among patients but also among their caregivers, families, and more.

According to the Minister of Health, the new strategy will positively impact patient access to improved screening and diagnostics, regardless of the patient’s condition or location. The associated funding will enable access to treatments as early as possible for better quality of life.

Innovative treatments for rare diseases often come with astronomical price tags, costing anywhere from $100,000 to more than $2 million each year. The newly announced funding will help Canadians access these treatments and share some of the financial burden.

The Canadian Association of PNH Patients will continue to follow the new national strategy and provide updates as possible. To learn more about PNH, seek support, or access additional resources, please connect with us and check out our guide on better living with PNH.