441-02584 (Health)

WHEREAS:

• Pulmonary Arterial Hypertension (PAH) patients need timely access to new therapies to help delay the progression of the disease, extend lives, and improve the quality of life of patients;

• In Canada, wait times are much longer to get access to new medicines compared to several European countries and the US;

• The federal government promised $1.4 billion to the provinces under the National Strategy for Rare Disease Drugs to help improve access to these medicines; and

• Today, five years after the funding was initially announced (in Budget 2019), not one cent has been spent to help patients access rare disease medicines.

THEREFORE:

We, the undersigned, citizens of Canada, call upon the Government of Canada to:

• That the federal government allocate this funding now to the provinces so that new treatments can be made available quickly to Canadians living with a rare disease, including those with PAH; and

• That the federal government takes a holistic approach to rare diseases that includes early detection and prevention, timely and equitable access to evidence-based care, enhanced community support (including for community-based patient organizations), and the promotion of innovative research by implementing a comprehensive Rare Disease Strategy.