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 the site 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

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.

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.

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.

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.

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

Biogen clinical trial

Cytokinetics ALS Patient Advocacy Partner Summit

 

Federal Updates

National Strategy for Drugs for Rare Disease roundtable

 

Provincial Updates

Government meetings

2022 Ontario Elections

 

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.

Access to therapies

AMX0035 | CADTH 

 Oral Edaravone | CADTH 

Edaravone | Personal Importation 

Proposed framework for a potential Pan-Canadian Formulary | CADTH 

PMPRB Regulations Delayed 

Federal Updates

Government Meetings 

Liberal – NDP Agreement 

 

Provincial Updates

Virtual Advocacy Week 

 2022 Ontario Pre-Budget Consultation 

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.

The ALS Society of Canada (ALS Canada) today marks Rare Disease Day 2022 by calling on the Ontario government to champion the urgent need for faster access to approved therapies for people living with Amyotrophic Lateral Sclerosis (ALS) – a devastating terminal disease that gradually 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.

“While today represents an important opportunity for all rare disease communities to raise awareness about the need for health policy change, every minute of every day is critical for people living with ALS who are awaiting access to treatment,” said Tammy Moore, CEO of ALS Canada. “When you consider the average life expectancy of ALS is only three years post diagnosis, it is clear the current drug approval and reimbursement processes in Canada do not function in a way that reflects the realities of living with this disease.”

ALS Canada – in consultation with the broader Canadian ALS community – released the Time is Now Position Paper that 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 this community.

During the week of March 7-11, 2022, Ontario’s ALS community will be meeting with elected officials and other decision makers within the province’s healthcare system as part of ALS Canada’s first-ever Virtual Advocacy Week. The purpose of these meetings is to encourage the Ontario government to build and implement a plan in partnership with the ALS community that would see the province championing the two solutions outlined in the position paper. To date, several meetings have already been scheduled with elected officials across Ontario.

“My sister Carla was diagnosed with ALS in November 2019 at 42 years of age. Carla was a vibrant, energetic first grade teacher who was always on the go and always helping others. By May 2020 she had lost the ability to speak and by July she was confined to a power wheelchair and needed a feeding tube,” said Paula Rodriguez, from Maple, Ontario. “It only took 19 months for this cruel disease to take my sister. The sad reality is that under the current pathways in Canada, it takes double the time my sister was living with ALS, for treatments to be made accessible to people who need them.”

A diagnosis of ALS and the impact of living with the disease have a profound and pervasive effect on the lives of not only those who are struck by this devastating disease, but also anyone who loves and cares for them. The realities of the disease are harsh – and they reinforce the need for better government support and access within the healthcare system.

“I think we can all agree that when it comes to expediting access to ALS treatments, the time is now. That is why the ALS community is looking beyond Rare Disease Day towards what we want to see created in Ontario today and in the future,” said Ms. Moore. “We believe that the solutions put forward in our position paper provide a feasible roadmap to get ALS therapies to Canadians – urgently, predictably and equitably.”

The Canadian Agency for Drugs and Technology in Health (CADTH) today posted a call for patient input on oral edaravone. This is a key milestone and a hopeful indicator for the Canadian ALS community. ALS Canada will be preparing a submission that reflects the diversity of perspectives and experiences of people living with ALS from across the country – and we are inviting you to add your voice. If you have direct experience with oral edaravone through the clinical trial and are interested in sharing your experience with us, please contact us at advocacy@als.ca.

Additionally, thank you to all community members who participated in our November 2021 CADTH survey that informed our submission about AMX0035. Your responses will have twice the impact, because we’ll be referencing them for the oral edaravone submission, too! Your input continues to help us ensure that issues of importance to the ALS community are considered by decision-makers at CADTH, who ultimately recommend whether public drug plans should cover the drug if it is approved by Health Canada.

We will continue to provide updates as we learn more about oral edaravone. You can learn more about how drugs become accessible to Canadians by visiting our blog post on this topic.

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

AMX0035 | CADTH

The Time is Now | ALS Position Paper & e-Advocacy Campaign Update

Edaravone

Health Canada ALS Patient Listening Session:

Federal Updates

Government Meetings

Post-Election | New Cabinet Appointments & Next Steps

 

 

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.

 

Access to therapies

AMX0035 | Health Canada Priority Review Decision

  • On August 31, it was announced that Health Canada would begin reviewing a New Drug Submission (NDS) for the prospective ALS therapy AMX0035.
  • Health Canada did not grant the AMX0035 priority review status, meaning that the treatment will undergo a 300-day standard review compared to a 180-day priority review.
  • We believe any new innovative ALS therapy should be granted priority review status.
  • We urge Health Canada to reverse its decision and immediately grant AMX0035 priority review status – and set an important precedent for all future ALS therapies.
  • To learn how you can take action and call on Health Canada to revisit this decision, visit our AMX0035 priority review blog post.

The Time is Now | ALS Position Paper & e-Advocacy Campaign Update

  • ALS Canada’s The Time is Now e-advocacy campaign, aimed at highlighting two solutions to getting Health Canada approved therapies to Canadians living with ALS more quickly, continues to gain momentum.
  • Join the thousands of Canadians who support this campaign and send your letter today: www.als.ca/the-time-is-now.
  • As of September 30, over 6,700 people participated in the e-campaign, telling their elected officials to help ensure that these solutions are implemented. A provincial breakdown is as follows:
    • Alberta: 327
    • British Columbia: 347
    • Manitoba: 221
    • New Brunswick: 57
    • Newfoundland and Labrador: 22
    • Nova Scotia: 52
    • Ontario: 4,418
    • Quebec: 996
    • Saskatchewan: 83
    • Yukon: 1
  • To bring forward the position paper’s recommendations, the ALS advocacy team, joined by community advocate Steven Gallagher, met with several Ontario Ministers’ Offices and Members of Provincial Parliament (MPPs):
    • September 8: Office of the Minister of Health, Hon. Christine Elliott (Newmarket—Aurora)
    • September 8: MPP Will Bouma (Brantford—Brant), Parliamentary Assistant to the Minister of Finance
    • September 14: MPP John Fraser (Ottawa South)
    • September 16: Office of the Minister of Labour, Skills Development and Training, Hon. Monte McNaughton (Lambton—Kent—Middlesex)
  • At the meetings, we discussed “The Time is Now” position paper and the important need for the Province to make meaningful changes to the drug access pathway now so that people and families living with ALS can get timely access to future medications as soon as they are approved by Health Canada. We also raised specific solutions to improve home and community care as it relates to PSWs and equipment loan programs.

 

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.

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

PMPRB Regulations Delayed

  • On June 29, the implementation of the Patented Medicine Prices Review Board (PMPRB)’s new regulations were delayed until January 1, 2022.
  • Further, on July 15, the PMPRB announced another public consultation on three new amendments to the regulations with an August 31 deadline.
  • ALS Canada is reviewing the proposed amendments and will be making a submission.

The Time is Now | ALS Position Paper & e-Advocacy Campaign Update

  • ALS Canada’s The Time is Now e-advocacy campaign, aimed at highlighting two solutions to getting Health Canada approved therapies to Canadians living with ALS more quickly, is gaining tremendous momentum.
  • As of August 18, 6,177 people participated in the e-campaign, telling their elected officials to help ensure that these solutions are implemented. A provincial breakdown is as follows:
    • Alberta: 236 (English) 1 (French)
      • British Columbia: 323 (English only)
    • Manitoba: 204 (English) 1 (French)
    • New Brunswick: 33 (English) 20 (French)
    • Newfoundland and Labrador: 19 (English only)
    • Nova Scotia: 41 (English only)
    • Ontario: 4,097 (English) 84 (French)
    • Quebec: 164 (English) 622 (French)
    • Saskatchewan: 80 (English only)
    • Yukon: 1 (English only)
  • Join the thousands of Canadians who support this campaign and send your letter today: www.als.ca/the-time-is-now.

Meeting with the pCPA

  • On August 16, ALS Canada joined a meeting organized by ALS community advocate Norman MacIsaac with the pan-Canadian Pharmaceutical Alliance (pCPA).
  • At the meeting we brought forward the Position Paper The Time is Now and raised solutions that will accelerate the reimbursement process for Health Canada-approved ALS treatments.
  • This meeting is a starting place for ongoing discussions with the pCPA about the need for faster reimbursement times for ALS therapies coming down the pipeline. These conversations will in turn support timely and affordable access for a community that doesn’t have time to wait.

 

Federal updates

2021 Federal Election

  • On August 15, on the advice of the Prime Minister, Her Excellency The Right Honourable Mary Simon, Governor General of Canada, dissolved Parliament and drew up writs for Canada’s 338 ridings – kicking off the start to the 2021 federal election campaign. The federal election date is September 20, 2021.
  • During the campaign period, ALS Canada will be monitoring parties’ policy platforms for commitments that will improve the lives of Canadians living with ALS and will be reaching out to each major party asking for their response on specific issues of relevance to the ALS community and posting the responses on our blog.

ALS Canada Pre-Budget Submission

  • On August 6, ALS Canada submitted a written brief to the House of Commons Standing Committee on Finance as part of their annual pre-budget consultation.
  • Our brief recommended that, the Government of Canada invest $35 million over five years to expand CAPTURE ALS from a pilot initiative to a world-leading, self-sustainable Open Science platform.
  • CAPTURE ALS will enable Canadian researchers to study why people experience ALS symptoms and progression so differently. This essential knowledge will help identify treatment targets, strengthen global clinical trials and develop Canadian infrastructure to attract private sector medical R&D investment.
  • The federal budget is typically tabled in March of each year.

Federal Bereavement Leave Update

  • On June 29, Bill C-220 received Royal Assent which made An Act to amend the Canada Labour Code (bereavement leave) become law.
  • This law increases the amount of bereavement days that federally regulated employees under the Canada Labour Code receive – these employees will now be entitled to 10 days instead of five.
  • The law also expands eligibility for the bereavement leave to include federally regulated employees who, at the time a family member dies, are on compassionate care leave or leave related to critical illness in respect of the deceased person.
  • The law does not come into effect until September 29, 2021 and updated eligibility information, with specific details for individuals interested in applying, has yet to be published.

 

Provincial updates (Ontario)

  • Meeting with MPP Robin Martin
    • On August 4, ALS Canada CEO Tammy Moore, Public Affairs Manager Lauren Poplak, Kim Barry, Director of Community Services, and community members Scott and Martha Williams met with MPP Robin Martin, Parliamentary Assistant to the Minister of Health, to discuss challenges facing Ontarians living with ALS.
    • At the meeting we shared our specific solutions that will make meaningful differences in the lives of people living with ALS – especially as it relates to home and community care and access to therapies.

    Provincial Cabinet Shuffle

    • On June 18, Premier Doug Ford announced changes to the Executive Council of Ontario.
    • Relevant changes to the ALS community include:
      • Rod Phillips, MPP for Ajax, became Minister of Long-Term Care.
      • Dr. Merrilee Fullerton, MPP for Kanata-Carleton, became Minister of Children, Community and Social Services.
    • ALS Canada has been in touch with the new pertinent members of Cabinet to request meetings and raise the urgent needs of Ontario’s ALS community.

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.

 

Access to therapies

The Time is Now | ALS Position Paper & e-Advocacy Campaign

  • In consultation with the broader Canadian ALS community – ALS Canada has just released a Position Paper that offers two solutions to getting Health Canada approved therapies to Canadians living with ALS in a timeframe that more accurately reflects the urgent needs of this community.
  • We also launched an e-advocacy campaign, enabling people to send a pre-written letter to elected officials, telling them to help to ensure that these solutions are implemented.
  • Send your letter now: www.als.ca/the-time-is-now

Amylyx AMX0035 Update

  • On June 14, Amylyx announced that it has filed a New Drug Submission (NDS) to Health Canada for its ALS therapy AMX0035.
  • While this announcement does not yet mean Health Canada’s review of the drug has begun, Amylyx’s decision to pursue regulatory approval of AMX0035 is an important step forward. The next step would be for Health Canada to accept the company’s NDS, which would trigger a regulatory review.

Blog post: How new drugs become approved and accessible to Canadians

  • With the news that Amylyx intends to apply to Health Canada for approval of their AMX0035 therapy for ALS, we’ve refreshed our blog post explaining how new drugs become accessible in Canada.

PMPRB Reforms

  • With the revised Patented Medicine Prices Review Board (PMPRB) guidelines slated to come into effect next month, ALS Canada has joined other health charities and patient organizations in continuing to speak against the reforms: we have urged Health Minister Patty Hajdu to reconsider the new guidelines and, following news that the PMPRB has developed a communication strategy focused on discrediting patient groups, we have asked Prime Minister Trudeau to delay the guidelines’ implementation.
  • On June 4, the Members of the House of Commons Standing Committee on Health (HESA) met to continue their study of the new Patented Medicine Prices Review Board (PMPRB) guidelines.

 

Federal updates

ALS Caucus Meeting

  • On May 17, ALS Canada participated in the multi-party Parliamentary ALS Caucus meeting as an invited guest to discuss access to ALS therapies.
  • Alongside ALS advocates and community members Norman MacIsaac, Mike Cels and Carmen Cels, we discussed the critical need for government to play role in reducing the time it takes for new therapies to be made available to Canadians living with ALS once they’re proven safe and effective.
  • On June 11, the multi-party Parliamentary ALS Caucus sent an open letter to federal Health Minister Patty Hajdu, calling for the Government of Canada to reduce the Health Canada approval time for new ALS drugs from six months to three months and to work with the provinces and territories to accelerate the reimbursement timeline for new ALS therapies.

 

Provincial updates (Ontario)

  • COVID-19 Vaccine Advocacy
    • On June 4, as part of a coalition of health charities in Ontario, ALS Canada asked that vulnerable Ontarians and their caregivers be prioritized for a second doses of the vaccines, along with other high-risk populations.

    New legislation to regulate Ontario PSWs

    • On June 3, the Advancing Oversight and Planning in Ontario’s Health System Act, 2021 came into effect. This Act creates new measures to regulate education and training standards for personal support workers (PSWs), enhancing their capacity to provide care services to the province’s most vulnerable people.
    • We are glad to see this Act come into effect, as we have been advocating for changes to the PSW sector for many years so that Ontarians living with ALS can receive improved home and community care.

    PSW Temporary Wage Increase Extension

    • On June 11, the government announced another extension to the temporary wage increase for personal support workers (PSWs). This will include approx. 150,000 PSWs working in home and community care, long-term care, public hospitals, and social services settings.
    • Eligible PSWs will continue to receive the $3/hour wage increase ($2/hour increase for PSWs working in hospitals) until August 23, 2021.

    Ontario Legislature Adjournment

    • On June 3, the Ontario Legislature adjourned for the summer months. It is scheduled to resume sitting on September 13.

 

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.

Welcome to ALS Canada’s first Advocacy Update. This new 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

Government response to ALS community petition

  • On April 26, the Government of Canada’s response to the ALS community-led e-petition to the Minister of Health was published.
  • Led by ALS advocate Norman MacIsaac and MP Heather McPherson, the petition was presented in the House of Commons on March 11 after receiving over 25,000 signatures.
  • While the government committed to continuing to consult with stakeholders, the response primarily highlighted previously announced health and drug policy initiatives and did not address the urgency faced by people living with the reality of an ALS diagnosis.

Extension of edaravone personal importation

  • On April 1, Health Canada confirmed that Canadians living with ALS can continue to access edaravone through personal importation beyond April 1, 2021 until October 1, 2021. This marks the third extension to edaravone personal importation as a result of advocacy efforts.

 Head of Canadian Drug Agency Transition Office announced

  • On April 1, Health Canada announced Susan Fitzpatrick as the Head of the Canadian Drug Agency Transition Office. Formally announced in the Federal Government’s 2019 Budget, the Canadian Drug Agency will be a new national drug agency building on existing provincial and territorial approaches and taking a coordinated approach to assessing effectiveness and negotiating prescription drug prices on behalf of Canadians.
  • ALS Canada has been in touch with Ms. Fitzpatrick, asking to meet to discuss ways the Canadian Drug Agency can be developed to meet the needs of the ALS community and reduce the time it takes for safe and effective therapies to be made available to Canadians.

Meetings with industry regarding access to therapies

  • In April, ALS Canada met with six different pharmaceutical companies who are in the process of researching and developing new ALS treatments.
  • Conversations focused on building relationships, highlighting the strengths of the Canadian ALS landscape and community, learning about the current state of their innovative research, and discussing how all parties can work together to ensure new therapies that are proven safe and effective can be made available to Canadians living with ALS as soon as possible.

 

Federal updates

Federal Budget

  • On April 19, federal Finance Minister, Hon. Chrystia Freeland, tabled the Government of Canada’s 2021 Budget in the House of Commons.
  • While there were new investments in health and supports for the charitable sector, we were disappointed not to see any direct funding for CAPTURE ALS, which will strengthen clinical trials, accelerate therapeutic development, and encourage new medical R&D investment in Canada.
  • We had also hoped to see further progress and clarification on a framework for the development of a strategy for High-Cost Drugs for Rare Disease.
  • A select few of the health and scientific investments that may be relevant to the ALS community include:
    • A total $2.2 billion over seven years towards growing a vibrant domestic life sciences sector.
    • $250 million over three years, starting in 2021-22, to the Canadian Institutes of Health Research (CIHR) to implement a new Clinical Trials Fund.
    • $400 million over six years, starting in 2021-22, in support of a Pan-Canadian Genomics Strategy.
    • $29.8 million over six years, starting in 2021-22, to Health Canada to advance the government’s palliative care strategy.
    • $13.2 million over five years, beginning in 2021-22, with $2.6 million per year ongoing, to Health Canada to ensure that Canada’s medical assistance in dying framework is implemented consistently and with all appropriate safeguards.

 

Provincial updates (Ontario)

    • New legislation to regulate Ontario PSWs
      • On April 27, the Government of Ontario introduced new legislation at Queen’s Park that, if passed, will create new measures to regulate parts of Ontario’s health care workforce, including personal support workers (PSWs), physician assistants, and behaviour analysts.
      • Entitled the  Advancing Oversight and Planning in Ontario’s Health System Act, 2021, the bill would “establish a new legislative framework to support greater uniformity of education and training standards for personal support workers and would build on their capacity to provide care services to the most vulnerable Ontarians, including children, older adults and people with disabilities,” according to the government’s press release.
      • ALS Canada has been advocating for improvements to the PSW workforce in Ontario for several years so that Ontario families living with ALS can have access to a better standard of home and community care that will meet their complex care needs.

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.

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 on drugs for rare diseases, Canadians – including organizations like ALS Canada – have been invited to provide input into what a national strategy could look like. It’s important that we take this opportunity to bring forward the perspectives and experiences of people living with ALS and we want to hear from you!

To help inform our submission, ALS Canada is conducting a survey to gather information from anyone who:

  • Is living with ALS;
  • Is a caregiver, family member or friend of someone currently living with ALS; or
  • Has lost a loved one to ALS.

We invite you to read the Government of Canada’s consultation Discussion Paper for Engaging Canadians, which describes key considerations and questions for developing a national strategy, and to respond to our questionnaire, which has been designed specifically to seek the input of the ALS community.

 

The survey will be open until March 15, 2021, so we encourage you to make your views known today.

 

The information you provide by completing our questionnaire will help tell government that the needs of people living with ALS are urgent and, with potential new treatments in the pipeline, it’s essential that Canadians be able to access them quickly, equitably and affordably.

Thank you for your consideration and engagement in this process.

Take part in the survey today!