Engaging with elected officials is a cornerstone of effective advocacy. Whether you are living with ALS, a caregiver, or someone who wants to see a better reality for people affected by this devastating disease, your voice matters. This blog post breaks it down to the basics and how you can take action and drive change.  

What is advocacy and why does it matter?

Advocacy is about taking action in support of a cause, policy, or idea. It is a strategic and consistent effort to create change, whereby awareness and support are built over time. It involves raising voices, sharing lived experiences, and building momentum to address unmet needs. 

A key part of effective advocacy is building positive relationships and trust with decision-makers with the goal of showing them why your issue matters and how their support can make a difference.  

For the ALS community, advocacy is essential in bringing attention to a disease that is often not well understood, ensuring that the voices of people affected by ALS are heard in the rooms where decisions are made. It drives the changes needed to improve access to therapies, care, investments in research, and pushes for policies that reflect the realities of people living with ALS.  

What impact does advocacy have?

There are many examples of tangible results from advocacy efforts of the ALS community – both in Canada and around the world. 

In the fall of 2024, the Government of Ontario funded the Ontario Provincial ALS Program after two and a half years of sustained advocacy by ALS Canada in partnership with Sunnybrook Health Sciences Centre, the five regional ALS clinics in Ontario, and the ALS community. People living with ALS, caregivers, and loved ones engaged with elected officials, reached out with emails of support, requested meetings, and shared their personal stories to show why this investment was urgently needed. The success of the Provincial Program is a great example demonstrating that advocacy requires a sustained effort and builds awareness and support incrementally. 

Public reimbursement of Radicava (edaravone) in all provinces and territories across Canada was also made possible through community advocacy. As the first therapy to be approved by Health Canada in nearly 20 years, its public reimbursement was driven by the advocacy of more than 3,000 Canadians who sent letters and met with their provincial elected officials urging them to ensure timely and equitable access to the treatment.  

How to know which level of government to reach out to?

In Canada, responsibilities are divided between federal, provincial, and territorial governments. Each level has a different role in shaping policies, funding initiatives, and delivering services. Knowing who does what is key to making sure your advocacy efforts reach the right people. 

For the ALS community, this matters when pushing for issues like access to therapies, home and community care, clinical trials, assistive devices, and research funding. Depending on the issue, you may need to engage with your provincial representative, your Member of Parliament (federal) or both.  

Provincial and territorial governments

The provincial and territorial governments are primarily responsible for delivering health care services. This includes: 

  • Managing and funding hospitals, clinics, long-term care facilities, and home care programs 
  • Providing coverage for medications through public drug plans  
  • Funding mobility aids, communication devices, and other medical equipment 

If you want to advocate for improved access to care (e.g. in a long-term care or hospital setting), home care support, assistive devices, or medications under provincial drug plans, reach out to your elected official in provincial government.  

Find your Member of Provincial Parliament (MPP) if you are in Ontario, Member of National Assembly (MNA) in Quebec, or Member of Legislative Assembly (MLA) in all other provinces and territories: 

Federal government

The federal government sets national health policy, regulates drugs and medical devices, and provides healthcare services to First Nations, Inuit, Métis, and Indigenous populations. It is also responsible for: 

  • Drug approval process through Health Canada 
  • Funding health research 
  • National social assistance programs (i.e., Disability Tax Credit, Employment Insurance benefits) 
  • Transfer payments to provinces for healthcare delivery 

If you want to advocate for ALS research funding to identify treatments, improvement to social assistance programs, or increased clinical trial capacity, reach out to your Member of Parliament.  

You can find your Member of Parliament here. 

Ways to engage with your elected officials

There are several ways to connect with your elected officials and share why issues affecting the ALS community matter. Below are a few practical tips to help you take action. You can also refer to our Advocacy Toolkit for additional resources to support you along the way. 

Attend local events

  • Elected officials often attend community events hosted in their ridings. 
  • You can attend these events, introduce yourself and share your connection to ALS, and highlight why your issue matters. 
  • Consider printing out the Facts about ALS and ALS Canada sheet in the Advocacy Toolkit to hand to the elected official/staff as a leave-behind. 

Write a letter or email

  • Sharing your story through an email or letter is a meaningful way to create a personal connection and build trust with elected officials. 
  • Begin the email or letter by introducing yourself as their constituent, followed by your connection to ALS and how it has affected you. Clearly define the issue you’re raising, highlight why it is important, and what you’re asking them to do. 
  • Check out our Advocacy Toolkit for a more detailed guide on telling your personal story. 

Use social media

  • If you are active on social media (i.e., Facebook, Instagram, X), you can share your story online and tag elected officials to raise awareness of the realities of ALS. 
  • There are several hashtags you can use to increase engagement with your post: #aWorldFreeOfALS #ALSstories #ALS 
  • Tag @ALSCanada so we can stay looped in on your advocacy efforts. 

Request a meeting

  • Request a meeting with your elected official or their staff by reaching out to their constituency office in your community.  
  • This is a mutually beneficial process as elected officials see their constituents as a vital source of information to learn about the needs of their communities. 
  • Before your meeting, take time to clarify your key points and prepare what you’d like to say. 
  • Our Advocacy Toolkit includes a Sample Meeting Flow to help you develop a clear meeting structure.  

ALS Canada is here to support you. 

If you have any questions about how to engage with an elected official, want to learn more about advocacy, or to let us know how you are getting involved, please reach out to advocacy@als.ca.  

This blog series is a place for the ALS community to learn about and stay updated on ALS Canada’s advocacy efforts as well as relevant developments within the government. Please note that because ALS Canada advocates federally and provincially within Ontario, these updates will primarily feature updates from the federal and Ontario provincial levels of government.

Therapeutics Update

QALSODY Health Canada Approval

  • On March 3, 2025, Health Canada approved QALSODY (tofersen) under a Notice of Compliance with Conditions (NOC/c) for the treatment of ALS in adults who have a pathogenic variant/mutation in the superoxide dismutase 1 (SOD1) gene. This means the drug will soon be made available and can be marketed in Canada with certain conditions.
  • At this stage, the drug is not yet covered under public or private drug programs. We will continue our advocacy to ensure decision-makers in the reimbursement process work quickly to provide expedited and equitable access to the therapy for Canadians living with SOD1-ALS.

Access to Therapies

QALSODY – Canada’s Drug Agency Patient Input Submission

  • In response to Canada’s Drug Agency (CDA)’s call for patient input on QALSODY, ALS Canada has submitted a patient input submission based on the experiences and perspectives of nearly 600 members of the ALS community who made their voice heard through our survey and focus groups.
  • This submission is a crucial next step in ensuring the realities of ALS are reflected in the decision-making process.
    • Learn more about the next steps in the drug access process.

 

National Strategy for Drugs for Rare Diseases

  • All provinces and territories have now signed bilateral agreements with the federal government under the National Strategy for Drugs for Rare Diseases. Each province will receive its share of $1.4 billion over three years to improve access to new drugs for rare diseases for its residents and to support enhanced access to existing drugs, early diagnosis, and screening for rare disease
    • Ontario: $535 million over three years (January 24, 2025)
    • British Columbia: $194 million over three years (July 23, 2024)
    • Saskatchewan: $40 million over three years (January 10, 2025)
    • Manitoba: $48 million over three years (February 27, 2025)
    • Nova Scotia: $39 million over three years (March 20, 2025)
    • Newfoundland and Labrador: $22 million over three years (November 15, 2024)
    • Prince Edward Island: $10 million over three years (March 7, 2025)
    • Yukon: $8.5 million over three years (March 13, 2025)
    • Northwest Territories: $7.8 million over three years (March 13, 2025)
    • Nunavut: $7.3 million over three years (March 13, 2025)
    • Quebec: $305 million over three years (March 21, 2025)
  • We are pleased to see all provinces agreeing to the need for improved and faster access to drugs for people living with rare diseases. We hope the National Strategy will be a significant step forward in knowledge building and improving access to therapies for people living with rare diseases, including the ALS community.
  • We remain committed to working with the federal and provincial governments to establish rare disease pathways in each province while advocating for swift action to meet the urgent needs of people affected by ALS.

 

Canada’s Drug Agency – Consultation on Improvements to Drug Reimbursement process

  • ALS Canada participated in CDA’s consultation on Proposed Improvements to the Reimbursement Review Process bringing forward the importance of the need for disease-specific expertise and people with lived experiences, such as ALS neurologists and people affected by ALS, to be formally included in the health technology assessment of therapies and greater transparency around how patient input considered in the decision-making process.

Provincial Updates

Ontario Elections

  • In February 2025, elections were held in Ontario and the Progressive Conservative party led by Premier Doug Ford was elected for a third majority government.
    • The Hon. Sylvia Jones remains as Minister of Health.
  • We will continue engaging with Ontario elected officials and advocating for expedited and equitable access to approved therapies, appropriate healthcare resources, improved home and community care and highlighting the impact of the Ontario Provincial ALS Program for people living with ALS and work to ensure its sustainability into the future.

 

Ontario Health atHome

  • ALS Canada continues to work closely with Ontario Health atHome (OHAH) to help ensure timely and streamlined access to home care services that meet the needs of Ontarians living with ALS.

Federal Updates

Prorogation and New Prime Minister

  • On January 6, 2025, former Prime Minister Justin Trudeau announced his resignation and prorogued Parliament until March 24 to allow the Liberal Party to choose a new leader. Prorogation postpones the meeting of Parliament without ending the session.
  • Mark Carney became the leader of the Liberal Party and was sworn in as the new Prime Minister on March 14. Prime Minister Carney then called an election which will be held on April 28, 2025.
  • To continue empowering your advocacy efforts, we have launched a practical resource you can utilize to engage with federal candidates about key priorities of the ALS community.

 

Canada Disability Benefit Regulation Published

  • The government approved the regulations for the Canada Disability Benefit Act (CBD) which will come into effect on May 15, 2025. The purpose of the benefit is to financially support working-age people with disabilities.
  • The eligibility in the regulations means individuals with the Disability Tax Credit (DTC) certificate who have filed their 2024 income tax return can apply for the CDB starting in June, with payments beginning in July 2025.

Government Meetings

  • On February 6, ALS Canada met with Dr. Supriya Sharma, Chief Medical Advisor, and other representatives at Health Canada to discuss the ALS drug landscape, and Canada’s position as a leading hub for ALS clinical trials.

Note to Readers: This update is a source of information for the ALS community that provides an overview of advocacy efforts and current affairs for Canadians affected by ALS. While there are many topics presented in this update, they don’t represent ALS Canada’s official position on any particular issue, nor indicate a complete list of ALS Canada’s advocacy priorities. We’re also unable to share all details about certain engagements with government and industry stakeholders due to confidentiality reasons.

ALS Canada has submitted the patient input submission for Canada’s Drug Agency (CDA)’s review of QALSODY (tofersen), a therapy recently approved by Health Canada. This submission is a crucial step in ensuring that voices of the ALS community are reflected in the decision-making process.

You can read the submission here.

In response to CDA’s call for patient input, we are incredibly grateful to nearly 600 members of the ALS community who shared their experiences and perspectives through our survey. Your input helped inform our submission, bringing forward the realities of ALS, the urgency for new treatment options, and the impact of currently available therapies.

What is next?

Now that we have submitted our patient input, CDA will review the clinical and economic evidence and the patient and clinician input submissions to assess the value of QALSODY and provide a reimbursement recommendation to federal, provincial, and territorial public drug plans. Here is a look at the process ahead:

  • CDA will evaluate the evidence, and patient and clinician input before issuing a draft recommendation of whether the drug should be reimbursed.
  • Once the draft recommendation is released, patients and clinicians will have an opportunity to submit feedback before the final recommendation is made.
  • After considering patient and clinicians’ feedback, CDA will issue one of the following final recommendations:
    • That publicly funded programs reimburse the drug without any specific conditions;
    • That publicly funded programs reimburse the drug with specific clinical criteria and/or conditions; or
    • That the drug not be reimbursed.
  • If the recommendation is for the public drug plans to reimburse the drug without or with conditions, pricing and reimbursement discussions will take place through the pan-Canadian Pharmaceutical Alliance (pCPA).

You can learn more about how drugs become accessible in Canada by visiting our blog post on this topic.

ALS Canada will continue to advocate for timely and equitable access to approved therapies. We will continue to engage with CDA, the pCPA, and other stakeholders throughout the reimbursement process to ensure that the needs and experiences of the ALS community are at the forefront of their decision-making.

We will keep you updated as the process moves forward.

More information

To learn more about QALSODY, visit our frequently asked questions blog post on this drug.

This series is a place for the ALS community to learn about and stay updated on ALS Canada’s advocacy efforts as well as relevant developments within government. Please note that because ALS Canada advocates federally and provincially within Ontario, these updates will primarily feature updates from the federal and provincial (Ontario) levels of government.

Access to Therapies

National Strategy for Drugs for Rare Diseases

Therapeutics Updates

Discontinuation of Radicava IV (edaravone)

Provincial Updates

Ontario Provincial ALS Program

Federal Updates

FINA 2025 Pre-Budget Consultations – CAPTURE ALS

CNDR Funding

 

 

Note to readers: This update is a source of information for the ALS community that provides an overview of advocacy efforts and current affairs for Canadians affected by ALS. While there are many topics presented in this update, they don’t represent ALS Canada’s official position on any particular issue, nor indicate a complete list of ALS Canada’s advocacy priorities. We’re also unable to share all details about certain engagements with government and industry stakeholders due to confidentiality reasons.

You can read past advocacy updates here.

This blog series is a place for the ALS community to learn about and stay updated on ALS Canada’s advocacy efforts as well as relevant developments within government. Please note that because ALS Canada advocates federally and provincially within Ontario, these updates will primarily feature updates from the federal and Ontario provincial levels of government.

Access to Therapies

Annual Premiers’ Conference

Canada’s Drug Agency Strategic Planning Process

Canada’s Drug Agency – Symposium 2024

Provincial Updates

Ontario Provincial ALS Program

Provincial Cabinet Shuffle

Federal Updates

2025 Federal Pre-Budget Consultation

National Strategy for Drugs for Rare Diseases

Funding for Promoting Early Access to Palliative Care

Government Meetings

 

Note to readers: This blog is a source of information for the ALS community that provides an overview of advocacy efforts and current affairs for Canadians affected by ALS. While there are many topics presented in this blog update, they don’t represent ALS Canada’s official position on any particular issue, nor indicate a complete list of ALS Canada’s advocacy priorities. We’re also unable to share all details about certain engagements with industry stakeholders due to confidentiality reasons.

You can read past advocacy updates here.

This blog series is a place for the ALS community to learn about and stay updated on ALS Canada’s advocacy efforts as well as relevant developments within government. Please note that because ALS Canada advocates federally and provincially within Ontario, these updates will primarily feature updates from the federal and Ontario provincial levels of government.

Therapeutics updates

ALBRIOZA (AM00X35)

Provincial Updates

Ontario Provincial ALS Program

Provincial Cabinet Shuffle

Federal Updates

Letter to the Minister of Transport 

Government Meetings

ALS Awareness Month

Note to readers: This blog is a source of information for the ALS community that provides an overview of advocacy efforts and current affairs for Canadians affected by ALS. While there are many topics presented in this blog update, they don’t represent ALS Canada’s official position on any particular issue, nor indicate a complete list of ALS Canada’s advocacy priorities. We’re also unable to share all details about certain engagements with industry stakeholders due to confidentiality reasons.

You can read past advocacy updates here.

This blog series is a place for the ALS community to learn about and stay updated on ALS Canada’s advocacy efforts as well as relevant developments within government. Please note that because ALS Canada advocates federally and provincially within Ontario, these updates will primarily feature updates from the federal and Ontario provincial levels of government.

Therapeutics updates

Masitinib

ALBRIOZA (AM00X35)

Tofersen

Access to therapies

Meeting with the new pCPA leadership

Canadian Organization for Rare Disorders (CORD) – Rare Disease Day 2024 Summit

Provincial Updates

ALS Canada’s Queen’s Park Day of Action

2024 Ontario Budget

Government Meetings

 

Note to readers: This blog is a source of information for the ALS community that provides an overview of advocacy efforts and current affairs for Canadians affected by ALS. While there are many topics presented in this blog update, they don’t represent ALS Canada’s official position on any particular issue, nor indicate a complete list of ALS Canada’s advocacy priorities. We’re also unable to share all details about certain engagements with industry stakeholders due to confidentiality reasons.

Implementation of the Ontario Provincial ALS Program is critical for addressing the urgent needs of Ontarians living with ALS and their families

Toronto – Today, people living with amyotrophic lateral sclerosis (ALS) and their caregivers join the ALS Society of Canada (ALS Canada) and physicians from Ontario’s five regional multi-disciplinary ALS Clinics for a Day of Action at Queen’s Park, urging the Ontario government to invest $6.6 million of crucial funding in Budget 2024 to support Ontarians living with ALS and their families with their health care needs.

The goal of today’s ALS Canada Day of Action is to raise awareness of the current realities of the province’s health care system, which fails to meet the complex and urgent needs of people living with ALS, leaving more than 1,300 Ontarians without adequate care and support. These shortfalls could cost an already overburdened health care system millions in unnecessary emergency department and intensive care unit trips due to crises that could have been avoided. In addition, today, one in four Ontarians with ALS are choosing medical assistance in dying, and increasingly, they are citing poor support as the reason.

“The progressive nature of ALS is relentless, resulting in an increased amount of care and equipment required over time. Ontario’s health care system fails to meet these needs. Because of this, ALS Clinics are working beyond their capacity without the necessary multi-disciplinary professionals and a dependence on donors to fund ALS Canada to fill the enormous gaps. This includes critical areas such as providing essential patient equipment and community-based support services,” says Tammy Moore, CEO of ALS Canada. “Without dedicated and sustainable funding for ALS care and support, Ontarians living with ALS and their families face greater risk, leading to poorer quality of life, and increased strains on the province’s health care resources.”

ALS is a fatal neurological disease that progressively paralyzes a person as their muscles break down, losing the ability to walk, talk, eat, swallow, and eventually breathe. Although symptoms can vary, most people will require costly mobility equipment, communication devices, and breathing machines with additional living modifications and care needed. With no cure and few treatment options, approximately 80 per cent of people with ALS die within two to five years of being diagnosed.

“Living with ALS is an extremely difficult and demanding experience for people like me and our families. The disease is unrelenting and brutal, as it attacks every part of the body,” says Steven Gallagher, diagnosed with ALS in 2019 at the age of 47. Steven now relies on eye-gaze technology to communicate as his disease progresses. “It’s even more distressing that care is inadequate for so many people living with ALS. We deserve and demand better care and urge the Ontario government to address these inequalities by including the Ontario ALS Provincial Program as part of Budget 2024.”

To address the critical and complex needs of the ALS community, ALS Canada, in collaboration with the five regional multi-disciplinary ALS Clinics in Ontario (Hamilton, Kingston, London, Ottawa, and Toronto), developed the Ontario Provincial ALS Program.

“All five ALS clinics in Ontario are significantly underfunded and lacking in the essential multi-disciplinary staff to care for this severely disabling and terminal disease,” says Dr. Lorne Zinman, Director of the ALS Clinic at Sunnybrook Health Sciences Centre. “We are optimistic that the Ontario Provincial ALS Program will be funded, providing clinics and ALS Canada with the necessary resources to adequately care for all patients with ALS in the province, improving quality of life and reducing the need for emergency room visits and hospital admissions.”

The program includes four key recommendations:

The program requires an initial investment of $6.6 million from the Ontario government’s 2024 budget to implement. The recommendations included in the program are strategic, cost-effective, and efficient solutions that will continue to position Ontario as a leader in care, addressing urgent needs and improving the quality of life for Ontarians living with ALS.

To learn more about the Ontario Provincial ALS Program, visit als.ca.

About ALS and the ALS Society of Canada

Amyotrophic lateral sclerosis (ALS) is an unrelenting and currently terminal disease. It progressively paralyzes people because the brain is no longer able to communicate with the muscles of the body that we are typically able to move at will. Over time, as the muscles of the body break down, someone living with ALS will lose the ability to walk, talk, eat, swallow, and eventually breathe. Nearly 4,000 Canadians live with ALS and approximately 1,000 Canadians are diagnosed each year. Four out of five people living with ALS will die within two to five years of their diagnosis.

The ALS Society of Canada is working to change what it means to live with ALS. Grounded in and informed by the Canadian ALS community, we respond to the urgent unmet need for life-changing treatments by investing in high-quality research that will fuel scientific discovery and by engaging industry, supporting increased clinical capacity, and advocating for equitable, affordable, and timely access to proven therapies.

Responding to the tremendous need for current and credible ALS knowledge, awareness, and education, we empower Canadians affected by ALS to navigate the current realities of ALS, be informed consumers of ALS information, and advocate effectively for change. In Ontario, we provide direct community services to help people navigate ALS.

Founded in 1977, we are a registered charity that receives no core government funding – our work is powered by generous donors who share our vision of a world free of ALS.

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Join the conversation and connect with the ALS community online. Find ALS Canada on Twitter, Instagram, or like our page on Facebook. Visit als.ca to find out more.

For more information
ALS Society of Canada
media@als.ca
437-703-5402

Today, The Toronto Star has published an op-ed from Tammy Moore, CEO of the ALS Society of Canada (ALS Canada), which recognizes that Ontario’s health framework isn’t designed to address the unique challenges of ALS – a devastating disease that continues to take and take. This op-ed comes at an integral time as ALS Canada will come together with the ALS community tomorrow, February 21, for a Day of Action at Queen’s Park.

We look to raise awareness of the current realities of the province’s health care system, which fails to meet the complex and urgent needs of people living with ALS, leaving more than 1,300 Ontarians without adequate care and support.

ALS Canada urges the Ontario government to invest $6.6 million of crucial funding in Budget 2024 to support Ontarians living with ALS and their families with their health care needs. This is part of the Ontario Provincial ALS Program.

To read the op-ed, visit.

In Canada, what the provincial health care systems provide does not always match the needs of people living with ALS. This statement rings true for Ontario, where the current ALS care and support landscape in the province presents people living with ALS with significant challenges that demand immediate action. 

The Issue

The impact of an ALS diagnosis on the person living with the disease and their family, caregivers, and community is tremendous and pervasive – physically, psychologically, and financially. In Ontario, more than 1,300 people living with ALS not only face the harsh realities of this disease daily but also a healthcare system that fails to meet their complex and progressive needs, leaving them without adequate care and support.  

Our Solution

To address this urgent issue, the ALS Society of Canada (ALS Canada), in collaboration with the five regional multi-disciplinary ALS Clinics in Ontario (Hamilton, Kingston, London, Ottawa, Toronto), developed the Ontario Provincial ALS Program.   

The Ontario Provincial ALS Program is a comprehensive solution that addresses the complex, critical needs of the ALS community. The program includes four key recommendations: 

Recommendation 1: Address the disparities in access to multi-disciplinary ALS Care 

Issue: Due to the complex nature of ALS, people living with the disease have substantial care and equipment needs that evolve and increase over time. Effective management of ALS requires access to multi-disciplinary ALS clinics where healthcare providers, such as speech language pathologists, dietitians, social workers, respiratory therapists, and occupational therapists, play a key role in optimizing care. However, Ontario’s five regional ALS clinics are beyond capacity, under-resourced and unable to meet the unique levels of care identified in the Canadian Best Practice Recommendations for the Management of ALS.   

Solution: The Ontario government to provide incremental investments to ALS clinics to standardize and enhance existing care models, optimizing ALS care and ensuring each person living with ALS in the province receives the highest quality care.

Recommendation 2: Improve the quality of life and help people living with ALS maintain their independence, dignity, and safety  

Issue: ALS is an incredibly isolating disease due to the lack of awareness and the increasingly difficult physical realities. To support a person living with ALS, their caregiver, and the people closest to them, they are connected to ALS Canada Community Leads located throughout Ontario. ALS Canada Community Leads provide direct, in-home support and individualized information and resource navigation to ensure people are well-supported, helping to augment the health care system.

As a person living with ALS progresses in their disease, so does their reliance on mobility and communication equipment and other assistive devices that help them maintain their independence, dignity, and safety. However, Ontario’s medical equipment programs do not meet the needs of people living with ALS as they are left with equipment for short-term use only or with devices that are outdated for their needs or not right for them, which can put both themselves and their caregivers or families at significant risk. In the end, people living with ALS and their caregivers must turn to ALS Canada, a donor–funded organization, to fill the significant gaps that exist in Ontario’s healthcare system.

Solution: The Ontario government to allocate funds to ALS Canada’s Community Services and Equipment Programs, ensuring people have access to the right equipment and assistive devices at the right time, improving quality of life and helping people living with ALS maintain independence, dignity, and safety for themselves and their caregivers. 

Recommendation 3: Provide coordinated oversight of ALS care  

Issue: The lack of comprehensive oversight and coordination for ALS care in Ontario hinders the province’s ability to gather critical patient information, which would inform evidence-based decisions to shape a healthcare system that meets the needs of the ALS community. Comprehensive data capture, knowledge dissemination, and system planning are essential for a coordinated approach to ALS care. 

Solution: Formation of a secretariat to oversee and coordinate ALS care and facilitate comprehensive data capture, efficient knowledge dissemination, and strategic system planning.

Recommendation 4: Ensure equitable ALS care in northern and rural Ontario 

Issue:  Many Ontarians living in northern and rural regions face unique challenges in healthcare access due to vast distances and limited healthcare infrastructure. This is the case for people living with ALS in northern and rural Ontario, as they must endure long journeys to attend appointments at one of the five ALS clinics located in Toronto, London, Hamilton, Kingston, and Ottawa, leading to disparities and barriers in access to care.

Solution: The development of a regional strategy to provide equitable and accessible ALS care in northern and rural Ontario ensures that people living with ALS receive timely care regardless of their geographic location. 

Our Advocacy Progress Highlights

Shortly after submitting the proposal to the Ontario Ministry of Health in June 2023, ALS Canada began advocating for the implementation of the Ontario Provincial ALS Program. 

  • Government Meetings: Over the past several months, ALS Canada, along with community members, met with Ontario MPPs to discuss the implementation of the Ontario Provincial ALS Program, including the Minister of Health, Sylvia Jones, and the office of the Premier, Doug Ford. We will continue engaging with provincial elected officials, ministers, and other stakeholders to bring forward the realities of Ontarians living with ALS and the critical need for access to urgent care and support they require. 
  • 2024 Ontario Pre-Budget Submission: ALS Canada submitted a written submission as part of Ontario’s 2024 Budget Consultations, urging the government to invest $6.6 million to implement the recommendations outlined in the Ontario Provincial ALS Program.  
  • 2024 Ontario Pre-Budget Consultations: ALS Canada participated in six pre-budget public hearings held across Ontario by The Standing Committee on Finance and Economic Affairs (SCFEA) and local MPPs.  
  • Queen’s Park Advocacy Day: On February 21, 2024, ALS Canada, joined by ALS community members, will host an advocacy day at Queen’s Park, where we will engage with MPPs, urging them to include the Ontario Provincial ALS Program as part of Budget 2024. Keep an eye on our social media channels for further updates and information on our Queen’s Park Advocacy Day. 

What you can do right now

Reach out to your elected official in Ontario, urging them to support the implementation of the Ontario Provincial ALS Program. To inform and empower your advocacy efforts, we have developed resources you can use to approach your MPP.

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Next Steps & Updates

March 26, 2024 – Ontario’s 2024 Budget announcement, did not explicitly include a $6.6 million investment to implement the recommendations outlined in the Ontario Provincial ALS Program. We will continue our discussions with the government and relevant ministries to seek clarification.

We will continue providing relevant updates and ways to advocate on this blog post and our social media channels.

This blog series is a place for the ALS community to learn about and stay updated on ALS Canada’s advocacy efforts as well as relevant developments within government. Please note that because ALS Canada advocates federally and provincially within Ontario, these updates will primarily feature updates from the federal and Ontario provincial levels of government.

Therapeutics updates

RADICAVA Oral suspension (edaravone)

Access to therapies

e-advocacy Campaign

Advocacy-in-a-Box Toolkit

Provincial Updates

Regional 2024 Pre-Budget Consultations

Ontario Legislature Adjournment

Government Meetings

Note to readers: This blog is a source of information for the ALS community that provides an overview of advocacy efforts and current affairs for Canadians affected by ALS. While there are many topics presented in this blog update, they don’t represent ALS Canada’s official position on any particular issue, nor indicate a complete list of ALS Canada’s advocacy priorities. We’re also unable to share all details about certain engagements with industry stakeholders due to confidentiality reasons.

You can read past advocacy updates here.

This blog series is a place for the ALS community to learn about and stay updated on ALS Canada’s advocacy efforts as well as relevant developments within government. Please note that because ALS Canada advocates federally and provincially within Ontario, these updates will primarily feature updates from the federal and Ontario provincial levels of government.

Therapeutics updates

ALBRIOZA

RADICAVA Oral suspension (edaravone)

Access to therapies

pCPA Temporary Access Process (pTAP)

e-advocacy Campaign

Advocacy in a Box Toolkit

Federal updates

2024 Federal Pre-Budget Consultation

New Cabinet Appointments

Government meetings

Note to readers: This blog is a source of information for the ALS community that provides an overview of advocacy efforts and current affairs for Canadians affected by ALS. While there are many topics presented in this blog update, they don’t represent ALS Canada’s official position on any particular issue, nor indicate a complete list of ALS Canada’s advocacy priorities. We’re also unable to share all details about certain engagements with industry stakeholders due to confidentiality reasons.

You can read past advocacy updates here.

This blog series is a place for the ALS community to learn about and stay updated on ALS Canada’s advocacy efforts as well as relevant developments within government. Please note that because ALS Canada advocates federally and provincially within Ontario, these updates will primarily feature updates from the federal and Ontario provincial levels of government.

Therapeutics updates

Oral edaravone

  • pCPA: On March 14, 2023, the pan-Canadian Pharmaceutical Alliance (pCPA) started the negotiation process for oral edaravone.
    • While this is a positive step forward, Canadians living with ALS do not have the time to wait the months it can take for negotiations to conclude.
    • ALS Canada will continue to work with the pCPA and the provincial drug programs to lay the groundwork for swift reimbursement decisions to help ensure equitable access in a timeframe that meets the urgency of this disease.

Qalsody (tofersen)

  • On April 25, 2023, the U.S. Food and Drug Administration (FDA) approved Qalsody (tofersen) for the treatment of SOD1-ALS under the Accelerated Approval pathway.
  • ALS Canada developed an FAQ on Qalsody, which explores information on the therapy and discusses what this approval means to the Canadian ALS community.

 

Access to therapies

e-advocacy Campaign

  • ALS Canada’s e-advocacy campaign focused on expedited and equitable access to approved ALS therapies is ongoing.
  • The campaign calls on participants to email their provincial government and urges them to implement the solutions outlined in our position paper, The Time is Now, by reimbursing ALBRIOZA and oral edaravone without delay and ensuring criteria are in place that will allow anyone who could benefit from the therapy – as determined by their ALS clinician – to have public coverage.

Advocacy in a Box Toolkit 

  • To continue empowering your advocacy efforts for the urgently needed solutions outlined in The Time is Now position paper, we’ve launched a new Advocacy-in-a-Box toolkit that contains resources to support advocacy to provincial governments for swift and equitable reimbursement of Health Canada approved therapies.  
  • Grounded in The Time is Now position paper, the toolkit highlights the ALS community’s experience with Albrioza as an example of how Canada’s current approval and reimbursement processes do not meet the urgent needs of people living with ALS. 

 

Federal Updates

National Strategy for Drugs for Rare Diseases

  • On March 22, the Federal Government announced the National Strategy for Drugs for Rare Diseases.
    • We are pleased to see this strategy move forward and hope it will be a significant step in building knowledge and improving access to therapies for people living with rare diseases, including the ALS community.
    • We remain committed to being a partner and working with the federal and provincial governments to establish rare disease pathways in each province while advocating for swift action to meet the urgent needs of people affected by ALS.

 

Government meetings

  • On March 30, ALS Canada met with MP Heather McPherson and MP Francis Drouin, ALS Caucus Co-Chairs, to provide an update on the recent developments with respect to access to new ALS therapies.
  • On April 24, ALS Canada met with MPP Nolan Quinn to discuss the need for Ontarians living with ALS to have expedited and equitable access to therapies.
  • On May 15, ALS Canada, alongside a community member, met with MLA Brendan Macguire (Nova Scotia) to discuss the critical role provincial governments across Canada play to ensure people living with ALS have expedited and equitable access to therapies.
  • On June 7, ALS Canada, alongside a community member, met with MPP Adil Shamji to discuss the challenges Ontarians living with ALS face.

 

ALS Awareness Month

  • Federal Minister of Health, Jean-Yves Duclos, published a statement recognizing June ALS Awareness Month.
  • On June 1, Sylvia Jones, Ontario’s Minister of Health, acknowledged June ALS Awareness Month and introduced ALS Society of Canada as visitors at the Legislative Assembly.
  • On June 6, MPP Bob Bailey delivered a Members’ Statement in the Legislative Assembly acknowledging June as ALS Awareness Month.
  • On June 6, MPP Dawn Gallagher-Murphy raised point of order for unanimous consent to allow members to wear pins in recognition of June being ALS Awareness Month at the Legislative Assembly.
    • Throughout June, MPs and Ontario based MPPs voiced their support of people affected by ALS through videos published on ALS Canada’s social media channels.

Note to readers: This blog is a source of information for the ALS community that provides an overview of advocacy efforts and current affairs for Canadians affected by ALS. While there are many topics presented in this blog update, they don’t represent ALS Canada’s official position on any particular issue, nor indicate a complete list of ALS Canada’s advocacy priorities. We’re also unable to share all details about certain engagements with industry stakeholders due to confidentiality reasons.

You can read past advocacy updates here.

Today the ALS Society of Canada (ALS Canada) recognizes the start of ALS Awareness Month across the country. Join us as we raise awareness for amyotrophic lateral sclerosis (ALS), a devastating disease that affects nearly 4,000 Canadians currently diagnosed and their families.

“ALS is a relentless disease. As we’ve seen over the past year with the loss of hockey legend Börje Salming and the news of celebrities like Roberta Flack coming forward with her diagnosis, the spotlight has increasingly been on ALS. Still, there is much more to be done,” says Tammy Moore, CEO, ALS Canada. “Each year, more people are diagnosed, and each year we lose more of our loved ones. At ALS Canada, we strive to empower people living with ALS to navigate the current realities of the disease, be informed consumers of ALS information, and advocate effectively for change. We invest in the high-quality research that will fuel scientific discovery and hopefully lead to more approved therapies and improved quality of life.” 

ALS is a neuromuscular disease that paralyzes people because the brain can no longer communicate with the muscles of the body that we are typically able to move at will. As a result, people with ALS face a progressive and devastatingly swift decline in the ability to talk, walk, eat, swallow, and eventually breathe. There is currently no cure for the disease that carries a lifetime risk of 1 in 300 for each of us.   ALS Canada works to provide hope for people affected through our investment in research, advocacy, information and community-based services, including direct support provided by the ALS Canada Equipment Program and ALS Canada Community Leads to Ontario families living with ALS.

This June, help us recognize ALS Awareness Month by getting involved with ALS Canada in a variety of ways: 

  • Purple for Awareness. Keep your eyes open for lighting and illuminations of local landmarks in your area as they go purple to recognize this important month. Check out the CN Tower, Nathan Phillips Square, and Niagara Falls throughout June.  
  • Lou Gehrig Day. Tune in on June 2 as Major League Baseball (MLB) recognizes Lou Gehrig Day, honouring the baseball great for his legacy and the awareness he has created for ALS around the world. The Blue Jays will mark the day on June 1 when they play at home. 
  • Global ALS Awareness Day. On Global ALS Awareness Day (June 21), ALS Canada will host a live webinar on ALS therapies in Canada with Dr. David Taylor, Vice-President, Research and Strategic Partnerships, ALS Canada. Register for free.  
  • Get Walk Ready! Get connected with the ALS community by joining the ALS Canada Walk to End ALS; for a complete list of dates and locations, visit walktoendals.ca.  Share your story and stay connected. Whether you want to share your journey or keep a loved one’s memory alive, we encourage you to follow ALS Canada on social media at @ALSCanada on Facebook, Twitter, and Instagram. Let us know what #aFutureWithout ALS means to you.

About ALS and the ALS Society of Canada 

Amyotrophic lateral sclerosis (ALS) is an unrelenting and currently terminal disease. It progressively paralyzes people because the brain is no longer able to communicate with the muscles of the body that we are typically able to move at will. Over time, as the muscles of the body break down, someone living with ALS will lose the ability to walk, talk, eat, swallow, and eventually breathe. Nearly 4,000 Canadians live with ALS and approximately 1,000 Canadians are diagnosed each year. Four out of five people living with ALS will die within two to five years of their diagnosis. 

The ALS Society of Canada is working to change what it means to live with ALS. Grounded in and informed by the Canadian ALS community, we respond to the urgent unmet need for life-changing treatments by investing in high-quality research that will fuel scientific discovery and by engaging industry, supporting increased clinical capacity and advocating for equitable, affordable, and timely access to proven therapies. 

Responding to the tremendous need for current and credible ALS knowledge, awareness and education, we empower Canadians affected by ALS to navigate the current realities of ALS, be informed consumers of ALS information, and advocate effectively for change. In Ontario, we provide direct community services to help people navigate ALS. 

Founded in 1977, we are a registered charity that receives no core government funding – our work is powered by generous donors who share our vision of a future without ALS. 

Join the conversation and connect with the ALS community online. Find ALS Canada on Twitter, Instagram, or like our page on Facebook. 

 

For more information

ALS Society of Canada

media@als.ca

437-703-5440 

This blog series is a place for the ALS community to learn about and stay updated on ALS Canada’s advocacy efforts as well as relevant developments within government. Please note that because ALS Canada advocates federally and provincially within Ontario, these updates will primarily feature updates from the federal and Ontario provincial levels of government.

Therapeutics updates

Oral edaravone

Access to therapies

Advocacy in a Box Toolkit 

PMPRB Regulations

Provincial updates

2023 Ontario Pre-Budget Submission

Rare Disease Day

Government meetings

Note to readers: This blog is a source of information for the ALS community that provides an overview of advocacy efforts and current affairs for Canadians affected by ALS. While there are many topics presented in this blog update, they don’t represent ALS Canada’s official position on any particular issue, nor indicate a complete list of ALS Canada’s advocacy priorities. We’re also unable to share all details about certain engagements with industry stakeholders due to confidentiality reasons.

You can read past advocacy updates here.

Today, February 28, marks Rare Disease Day. A day that provides the ALS Society of Canada (ALS Canada) a chance to bring awareness to the disease alongside other potentially lesser-known diseases to work together towards equity in health care, and access to diagnosis and therapies. Rare Disease Day helps to shed light on the lack of resources and challenges faced by people living with a rare disease. Health Canada’s draft definition of a rare disease is one that affects fewer than five in 10,000 persons in Canada. 

Amyotrophic lateral sclerosis (also known as ALS, Lou Gehrig’s disease, or motor neuron disease), a fatal neurodegenerative disease, results in progressive paralysis and, eventually, the loss of the ability to walk, talk, eat, swallow, and eventually breathe. Approximately 3,000 Canadians live with ALS, many of whom die within two to five years of diagnosis. To change this reality, ALS Canada funds research across the country and advocates for equitable, affordable, and timely access to proven therapies. Although ALS is technically a rare disease, it doesn’t feel that way for people who are affected including the person living with ALS, their loved ones, caregivers and friends and families – the impact is significant and can cause ripples for generations due to the devastation it inflicts.  

“Today marks a time to recognize the rare disease community, and at ALS Canada, it is a day to continue to raise awareness of the need to make crucial changes to our government’s health policies and investments,” says Tammy Moore, CEO of ALS Canada.   

Each year approximately 1,000 Canadians will learn that they have ALS, and a similar number will die. As ALS progresses so quickly, swift access to treatment is needed, yet the community continues to face significant challenges in how long it takes for provinces across Canada to reimburse ALS therapies. Long drug approval processes and reimbursement decisions – some taking more than three years – unnecessarily delay access in Canada.  

“There is no time to waste. For people living with ALS and their families, timely and equitable access to therapies is everything. We must continue to work together to advocate for changes to the current drug approval and reimbursement processes in Canada to respond to the urgent and unique needs of a person living with ALS,” continues Moore.    

It is vital that people living with ALS have their voices heard at a government level. Bringing forward the lived experiences of this community shows decision-makers the human impact of this devastating disease and why it is necessary to make changes to the drug access processes in Canada.   

“I realized, having gone through the Canadian ALS Learning Institute (CALI), just how important sharing my personal story can be to bring to light issues faced by people like me,” says Ray Freebury, who was diagnosed with ALS in 2018. “I used the training I received to approach my MPP. Like many of her colleagues, she had little knowledge of ALS and the problems of getting treatment approved and paid for,” Ray says. “I wanted her to know just how crucial access to existing therapies is. They can delay progression of the disease, improve the quality of life for people with ALS, and make life easier for personal carers who are often family members. Access to therapies also provides hope that more effective treatments are on the way.”  

Rare Disease Day is just one opportunity to bring these issues to the forefront however, our advocacy efforts don’t stop here. ALS Canada’s  Time is Now position paper, written in consultation with the broader Canadian ALS community, offers two concrete solutions to getting Health Canada-approved therapies to Canadians living with ALS in a timeframe that more accurately meets the urgent needs of the community.   

Alongside community members like Ray, ALS Canada continues to engage with officials in the federal and provincial governments to advocate for policy changes that will have a meaningful impact on people living with ALS today and in the future.    

If you’d like to get involved, download our Advocacy-in-a-Box Toolkit – together we can work toward change. 

This blog series is a place for the ALS community to learn about and stay updated on ALS Canada’s advocacy efforts as well as relevant developments within government. Please note that because ALS Canada advocates federally and provincially within Ontario, these updates will primarily feature updates from the federal and Ontario provincial levels of government.

Therapeutics updates

ALBRIOZA (AMX0035) 

Oral edaravone

Masitinib

Access to therapies

PMPRB Regulations

Federal updates

2023 Federal Pre-Budget Submission

Government meetings

 

Note to readers: This blog is a source of information for the ALS community that provides an overview of advocacy efforts and current affairs for Canadians affected by ALS. While there are many topics presented in this blog update, they don’t represent ALS Canada’s official position on any particular issue, nor indicate a complete list of ALS Canada’s advocacy priorities. We’re also unable to share all details about certain engagements with industry stakeholders due to confidentiality reasons.

You can read past advocacy updates here.

It’s been 15 years since my cousin Doug, who was like a big brother to me, was diagnosed with ALS. Our options were limited then with only one approved therapy available. We didn’t know what to do and who to turn to as we navigated the bend in the road. Today, when I reflect on developments in the ALS community, I am in awe, and most of all grateful, to the donors who continue to support our mission at ALS Canada.

As the needs of the community change, we as an organization have evolved to meet these needs. I want to share with you a few of the ways your donations help shift the reality of ALS from dying to living through research and early diagnosis, supporting families in their navigation, and advocating for meaningful policy changes.

Supporting early diagnosis

Earlier diagnosis of ALS is critical to better patient and clinical trial outcomes. A new project initiated by ALS Canada, ReferALS, seeks to reduce the time to receive an ALS diagnosis in Canada. This will be done through a set of tools and engagement strategies designed to accelerate patient referrals to neurologists specializing in ALS at Canadian ALS clinics.

Donate today

Making headway in research

ALS Canada continues to be the only source of dedicated ALS research funding across Canada. This means your gift allows ALS Canada funded researchers to continue striving to better understand ALS, and identify treatments that will alter the course of the disease.

CAPTURE ALS, a national research platform made possible with the support of ALS Canada’s donors, recruited its first participant earlier this year. The project has multiple sites across Canada engaging fundamental and clinical researchers in the hunt for answers to why ALS is different in each person. This is the crucial question that will help unlock new therapeutic targets, treatment options and lead us closer to personalized medicine.

Learn more about CAPTURE ALS

Pushing forward our advocacy efforts

ALS Canada engages with officials in the federal and Ontario governments to represent the voices and experiences of people living with ALS. With your help, ALS Canada continues to advocate for policy changes that will have a meaningful impact through equitable, timely, and affordable access to therapies, improved home and community care, and research funding.

Our Time is Now position paper was developed with stakeholders from the ALS ecosystem and we see how Health Canada, pCPA, and companies have responded. Your gifts enable ALS Canada to continue advocating to improve access to Health Canada approved therapies.

This past June, it was announced that Canada is the first country in the world to give the regulatory green light to the drug ALBRIOZA as a treatment for ALS. Health Canada’s approval is a positive step forward in the available treatment options for people living with ALS, and we are now working to make sure that every Canadian will have equitable and timely access within their province or territory.

Donate to support our work

Strengthening knowledge exchange and community support

Responding to the tremendous need for current and credible ALS knowledge, awareness, and education, ALS Canada empowers Canadians affected by the disease to navigate its current realities, be informed consumers of ALS information, and advocate effectively for change.

ALS Canada’s Canadian ALS Learning Institute (CALI) has cultivated incredibly engaged and empowered Community Ambassadors. The CALI program was launched in 2021 to inform people affected by ALS from across Canada about the Canadian ALS landscape, clinical research, and therapy development. Graduates of the CALI 2021 program continue to meet regularly, with nearly all participants still actively contributing to our advocacy and engagement efforts with government and industry. The second cohort was selected through an application process to participate in a series of learning modules this fall.

We want to see the reality of ALS change from dying to living with ALS. The current reality necessitates that families have access to a Community Lead in their region who can help them navigate the Ontario health system and access equipment at no cost to them. Over the course of a person’s disease progression, they could transition from needing the support of a walker, to needing a highly customized, powered wheelchair that can support a person living with a more advanced state of the disease. Access to the right equipment and assistive devices can help people maintain independence, dignity, and safety. The ALS Canada Equipment Program is entirely reliant on donor funding and your generosity sustains people’s quality of life.

Give a gift today

I want to thank you for taking the time to learn about what we are doing to meet the urgent needs of the ALS community. The holidays are a time to come together, and I hope you will take the opportunity to support families grappling with ALS during this festive but often difficult time.

Together, we can make a difference to families living with this disease today, and tomorrow. I invite you to make a donation today to sustain our efforts to realize a future without ALS.

With continued gratitude,

Tammy Moore
CEO, ALS Society of Canada

The ALS Society of Canada (ALS Canada) is pleased to be collaborating with IMD Health to provide easily accessible, up-to-date digital health education to healthcare providers, people living with ALS, and their families on the IMD platform.  

Empowering Canadians affected by ALS to be informed consumers of ALS information is one of the cornerstones of ALS Canada’s mandate. Having a presence on the IMD platform will contribute to more people having access to the information they need when it comes to making decisions about their health and advocating for themselves and the ALS community.

IMD Health is one of the largest digital health education platforms in North America, offering innovative technology that facilitates meaningful dialogue between healthcare professionals and people inside the examination room, in hospitals and pharmacies, and during virtual consultations. IMD’s award-winning platform enables healthcare professionals to instantly access over 110,000 educational graphics, videos, and other informative resources spanning more than 6,000 health topics. 

IMD Health curates medical content from more than 100 non-profit health organizations and pharmaceutical manufacturers, and puts them at the fingertips of healthcare professionals through one easy-to-use tool. They can securely email content to their patients for later review, increasing people’s understanding of their condition and treatment plan, and ultimately improving their health outcomes. In addition to this, IMD Health hosts thousands of Health Care Practitioner (HCP)-facing resources, including information about medications, clinical practice guidelines, and culturally sensitive care. 

ALS Canada’s resources are now freely available on IMD Health. This means that IMD’s established healthcare provider network can send people living with ALS resource packages containing trusted information on disease understanding, symptom management, sexual health, support & services, youth support, caregiver support, associated conditions, research, and advocacy. Resources also include professional tools for HCP learning. 

People living with ALS can self-educate and become active participants in their care with IMD’s public site. Here, you can access medically vetted, reliable, and engaging resources from ALS Canada, along with more than 100 health charities and organizations. 

ALS Canada is pleased to be a content partner of IMD Health. Responding to the tremendous need for current and credible ALS knowledge, awareness and education, ALS Canada empowers Canadians affected by ALS to navigate the current realities of ALS, be informed consumers of ALS information, and advocate effectively for change. This is one avenue to do it and we encourage healthcare professionals and their patients to make use of our resources on the platform. 

This blog series is a place for the ALS community to learn about and stay updated on ALS Canada’s advocacy efforts as well as relevant developments within government. Please note that because ALS Canada advocates federally and provincially within Ontario, these updates will primarily feature updates from the federal and Ontario provincial levels of government.

 

Therapeutics updates

ALBRIOZA (AMX0035) 

  • CADTH: On August 8, the Canadian Agency for Drugs and Technology in Health (CADTH) released its final recommendations on ALBRIOZA.
    • In late June, ALS Canada and the Canadian ALS Clinical community both provided feedback in response to the CADTH’s draft reimbursement recommendations for ALBRIOZA to help ensure coverage criteria reflect the realities of the diagnosis and treatment of ALS. 
    • The focus of the feedback was on challenges surrounding the proposed eligibility criteria. The final recommendations reflected a nuanced change to the suggested reimbursement conditions, as requested by ALS Canada in our feedback.
  • INESSS: On July 27, L’institut national d’excellence en santé et en services sociaux (INESSS), the agency responsible for Quebec’s reimbursement recommendations, issued a recommendation of “do not reimburse” for ALBRIOZA. 
    • ALS Canada sent a letter to the Quebec Minister of Health in late July encouraging a reimbursement decision from INESSS on ALBRIOZA.  
    • The ALS Society of Quebec and ALS Canada continue to advocate for the Minister of Health to reconsider and provide a positive reimbursement recommendation for ALBRIOZA.
  • pCPA: As of August 9, ALBRIOZA is on the list of drugs in negotiations with the pan-Canadian Pharmaceutical Alliance (pCPA).  
    • In July, ALS Canada met with the pCPA leadership team to discuss the need for an expedited negotiation process for ALBRIOZA.  
    • Following the meeting – and aligned with our advocacy – we are encouraged to see that pCPA started the negotiations a day after the final CADTH recommendations were released.  
  • Market access: In late July, ALBRIOZA (AMX0035) became commercially available in Canada for people living with ALS. 
  • Frequently Asked Questions (FAQ) Page: ALS Canada developed an FAQ on ALBRIOZA to empower our community to make informed decisions about the treatment.

 

Access to therapies

Tofersen FDA priority review 

  • In July, Biogen announced that the U.S. Food and Drug Administration (FDA) has accepted a New Drug Application (NDA) for tofersen under a priority review.  

Final Report on Proposed framework for a potential Pan-Canadian Formulary | CADTH   

  • CADTH released its final report on Proposed Framework for a Potential Pan- Canadian Formulary.
  • The report is intended to contribute to current conversations on potential pan-Canadian formulary within a national pharmacare program and the issues related to access and affordability. 
  • ALS Canada contributed to the consultation for the final report as a member of the Health Charities Coalition of Canada (HCCC) and highlighted the importance of making innovative medicines accessible to Canadians living with ALS in an affordable, timely and equitable manner.    

New Web Page | ALS treatments in the Canadian drug access processes 

  • ALS Canada recently launched the ALS Treatments in the Canadian Drug Access Processes page. 
  • This page provides information on how long it takes for a drug to make its way through the drug access processes in Canada and how ALS Canada is advocating to change that reality.

 

Provincial updates

  • Post-Election | New Cabinet Appointments
    • On June 24, a new provincial cabinet was sworn into the Ontario Legislature. The Hon. Sylvia Jones is appointed as the Minister of Health and Hon. Paul Calandra is appointed as the Minister of Long Term Care.

Note to readers: This blog is a source of information for the ALS community that provides an overview of advocacy efforts and current affairs for Canadians affected by ALS. While there are many topics presented in this blog update, they don’t represent ALS Canada’s official position on any particular issue, nor indicate a complete list of ALS Canada’s advocacy priorities. We’re also unable to share all details about certain engagements with industry stakeholders due to confidentiality reasons.

You can read past advocacy updates here.