Update: December 22, 2021: Wow! More than 600 of you responded to this call for input, making for a CADTH patient input submission that reflects diversity of perspectives and experiences from across the country (and beyond!). You can read our submission here, and an abridged version of it will be posted on CADTH’s website. November […]
Archive for the ‘Advocacy’ Category
-
MAKE YOUR VOICES HEARD: YOUR INPUT IS NEEDED FOR REVIEW OF NEW ALS THERAPY
-
The Time is Now: All ALS Therapies should be granted priority review
Health Canada recently began its review of AMX0035 to assess the therapy’s safety, efficacy, and quality. This process began in August when Health Canada accepted the manufacturer’s New Drug Submission (NDS). There are two timelines under which Health Canada conducts drug reviews: Standard Review, which is almost a one-year process (300 days) Priority Review, which […]
-
Knowing the issues that matter to the ALS Community: ALS Election Commitments
The 2021 federal election is wrapping up in less than a week! With Election Day scheduled for Monday, September 20, 2021, now more than ever, it’s important to know the issues that matter to you before you cast your vote. ALS Canada reached out to each major political party to get more details about how […]
-
How new drugs become approved and accessible to Canadians
Earlier this year, manufacturer Amylyx announced that it plans to pursue Health Canada approval for its AMX0035 therapy. We’ve updated the blog post we first published back in 2018 about how new drugs become accessible in Canada to help orient you to the steps involved, their purpose, the milestones along the way and the timelines […]
-
Provide your input into shaping a national strategy for rare disease drugs
ALS may not be considered rare by all. But the community of approximately 3,000 Canadians living with the disease today is small enough to face unique challenges, with access to therapies – from clinical trial to reimbursement – being a significant one. As the Government of Canada considers how best to create a national strategy […]
-
June 2020 PMPRB Draft Guidelines
Updated August 5, 2020 BACKGROUND: In December 2017, the federal government proposed amendments to the Patented Medicines Regulations. These guidelines govern how the Patented Medicine Prices Review Board (PMPRB) sets the price at which companies sell their drug to distributors across the country. The PMPRB Amended Regulations were published in August 2018 in the Canada […]
-
Together we are stronger: The ALS community takes to Ottawa
In early March, members of the ALS community joined ALS Canada in Ottawa for two days of advocacy training and meetings with politicians and other government officials. From people living with ALS and their caregivers and family members to researchers, clinicians and volunteers, our delegation of 35 people made the following asks of the federal […]
-
Access to Therapies: Radicava (edaravone) Update
Updated March 10, 2021 Updated October 5, 2020 Updated May 28, 2020 Originally posted October 22, 2019 In October 2018, Health Canada approved Radicava (edaravone) for use in Canada. As edaravone continues to move through the drug access pathway to become available to Canadians, there will continue to be important updates for those in our […]
-
COVID-19 Update: A message from our CEO
Dear ALS Community, ALS doesn’t stop. Neither will we. We understand what a challenging time this may be for people affected by ALS. The COVID-19 pandemic amplifies the many unknowns and the concerns that come with the realities of the disease. We want you to know we are here for you. Our Regional Managers are reaching […]
-
Radicava (edaravone): Take Action for Access
In October 2018, a new ALS treatment called Radicava was approved by Health Canada. It’s one of only two treatment options available to people living with this terminal disease. Today, over a year later, Radicava is still not available to Canadians through public drug plans. We want to change that. Join us in advocating for […]
-
Understanding the Issues: 2019 Federal Election Health Commitments
With the 2019 federal election campaign underway, are you curious about what the parties are saying about the issues that could affect Canada’s ALS community? ALS Canada asked each of the major parties what they would do, if elected, to help people and families affected by ALS. Specifically, we asked them about how they would […]
-
Because Of You: ALS Canada’s 2018 Annual Report
Every day, more than 3,000 people and families throughout Ontario and Canada live with the realities of ALS, a devastating disease that takes away dreams, abilities, and lives. But for all ALS takes, it cannot take away our shared desire for a future without this disease. We rely on you – our generous donors – […]
-
It’s about time to change the reality of ALS
ALS is always about time. How much time do I have? How much time until I can’t hug my children? How much time until I can no longer walk, or eat, or breathe? It’s about time we change that. It’s about time we stop ALS from shattering dreams, from devastating lives. It’s about time to […]
-
Augie’s Quest and ALS Research in Canada
For the second year in a row, Orangetheory Fitness is giving its members (and the community) a way for you to make an impact while getting in a good workout. It’s a win-win! On May 1, 2019, Orangetheory Fitness is launching a campaign throughout Canadian studios to benefit the ALS Canada Research Program. Their inaugural […]
-
ALS Research Matters
The realities of living with ALS – a challenging and terminal disease – led Carol Skinner and Eddy Lefrançois, two Canadians affected by ALS, to start a letter-writing campaign. The campaign encouraged fellow Canadians to contact their elected federal representative to ask for sustainable and direct ALS research funding. Over 2,300 Canadians joined Carol and […]
-
Health Canada has approved Radicava (edaravone), a second ALS treatment for Canadians
Highlights: On October 4, Health Canada approved Radicava (edaravone) for the treatment of ALS. Health Canada’s terminology for this approval is called a Notice of Compliance, or NOC. The approval follows a 180-day priority review of the drug. Approval from Health Canada means that Radicava (edaravone) can be marketed and sold in Canada. Other considerations, […]
-
Radicava (edaravone): Make your voice heard
Updated July 18, 2018 The Canadian Agency for Drugs and Technologies in Health (CADTH) recently posted an open call for patient input on Radicava (edaravone). This is an additional step along the approval and affordability pathway for the drug, which is currently being reviewed by Health Canada. In response to CADTH’s call for patient input, […]
-
How new drugs become approved and available to Canadians
With the news that manufacturer MT Pharma is pursuing the regulatory channels necessary to bring the drug edaravone to Canada, the ALS community in this country finds itself facing the possibility of a second treatment option nearly 20 years after riluzole was approved. But how does any new drug become approved in Canada – and […]
-
MPs give ALS a voice in Parliament
In 2016, a group of parliamentarians and senators from all major political parties united to bring awareness to the challenges facing Canadians living with ALS. Chaired by Francis Drouin, MP for Glengarry-Prescott-Russell, the creation of the ALS Caucus on Parliament Hill was a significant achievement, and ALS Canada is proud to have played a role […]
-
Government of Canada has announced the activation of the extension of the Compassionate Care Benefit (CCB) from six to 26 weeks
We are pleased to advise you that the Government of Canada has announced the activation of the extension of the Compassionate Care Benefit (CCB) from six to 26 weeks. Effective January 3, 2016, caregivers can now claim up to $13,624 in benefits, where previously it was $3,144. We hope this announcement will now relieve some […]