Equitable, Timely and Affordable Access to Therapies

We believe the entire drug access pathway must be streamlined and made more transparent and inclusive to address the needs of people living with ALS. This includes research and development, clinical trials, the process for new drug submission and approval, and public funding decisions.

The ALS community measures time not by months or years, but by loss – loss of function and loss of life. During a 180-day expedited timeline for Health Canada to review priority drugs, for example, 500 Canadians will die of ALS. Equitable, timely and affordable access to tomorrow’s therapies shouldn’t be a luxury – it should be a given.

Legislature Day May 4, 2023

Request for Expediated Access to Health Canada Approved Drugs for ALS

People living with ALS do not have the luxury of time.  When a drug has been approved for the treatment of ALS, it should not take 18-24 months to receive approval from the BC Medical Plan.  Health Canada approved Radicava infusion therapy in 2018. It was not approved for coverage with the BC Medical plan until summer of 2020.  Health Canada’s approval of the oral suspension of  Radicava under a priority review pathway underscores the importance of equitable and expedited access to effective treatments.  However, at this stage in the drug access process, the drug has not been approved by public programs. 

“The move worldwide now is to consider a “cocktail of therapies” for ALS. This approach has proven so very beneficial in cancer therapy. Even though any given component may not itself be of great benefit the combination may well be much more than just 1+1 =2. So, it is important to approve all available drugs with potential benefit quickly.” – Dr Andrew Eisen

We would like to see BC take the lead and approve this drug and others as they are approved by Health Canada.

Investment to support access for rare diseases. The ALS Society of British Columbia has written to Jean-Yves Duclos, Minister of Health Canada to request a seat on the stakeholder implementation advisory group to support the implementation of the strategy for rare diseases.