Tammy Moore
CEO, ALS Society of Canada
Equitable, affordable, and timely access to approved ALS therapies is an urgent issue for people living with ALS.
The ALS community measures time not by months or years, but by loss — loss of function and loss of life.
Amyotrophic lateral sclerosis or ALS (also known as Lou Gehrig’s disease or motor neuron disease), a fatal neurodegenerative disease, results in progressive paralysis and, eventually, loss of the ability to move, speak, and breathe. Any person has a 1 in 300 chance of receiving a diagnosis in their lifetime. There is no cure, and few treatment options exist for most people.
Given how quickly ALS can progress, access to treatments as soon as possible is critical. Long drug access processes — some taking more than three years — further complicate this, meaning that in the time it takes for someone to get access, we will have lost thousands of people to this devastating disease.
To change this reality, the ALS Society of Canada advocates for equitable, affordable, and timely access to approved therapies by amplifying the voices of the ALS community and influencing policy changes.
Together, we urge the federal, provincial, and territorial governments to improve access to therapies by:
- Creating an environment that makes Canada a country of choice for industry to bring new therapies from research and development to clinical trials, through to new drug submissions;
- Streamlining and increasing transparency of regulatory processes and timelines; and
- Asking governments to collaborate to address the health care and funding inconsistencies across Canada resulting in inequitable access to therapies.
With time as a precious resource for people living with ALS, they simply can’t wait. We must act now.
To learn more, visit als.ca or call 1-800-267-4257.
