CDA Submission: Incorporating Caregivers in Economic Evaluations
- ALS Canada participated in Canada’s Drug Agency’s (CDA) call for feedback on their Guidance for Incorporating Impacts on Informal Caregivers and Productivity Outcomes in Economic Evaluations draft report.
- In our feedback submission, ALS Canada highlighted that in the standard tools for measuring quality of life don’t fully capture the realities of caregiving for progressive diseases like ALS – from ongoing work of maintaining assistive equipment to the emotional and physical demands that don’t always track with a patient’s health status
- ALS Canada is encouraged by CDA’s work to ensure they capture the scope and impact of caregiving in economic evaluations, and we will continue to advocate to ensure that the lived experiences of caregivers within the ALS community are accurately included in the guidelines.
Qalsody – pCPA Negotiation
- Following a positive reimbursement recommendation from Canada’s Drug Agency (CDA), the pan-Canadian Pharmaceutical Alliance (pCPA) has started the negotiations for public drug plan coverage.
- Should negotiations conclude successfully, each province and territory will determine whether to list Qalsody on its public drug formulary, and under what conditions.
- ALS Canada will continue to advocate for timely and equitable access to approved therapies. We are continuing to engage with the pCPA and other stakeholders throughout the reimbursement process to ensure that the priorities of the ALS community are at the forefront of their decision-making. We will continue to provide updates as the process progresses in the coming months.
Ontario Provincial ALS Program: Celebration of Impact Reception.
- On April 21, Ontario’s ALS community came together at Queen’s Park to recognize the impact of the Ontario government’s investment in the Ontario Provincial ALS Program.
- At the reception, members of the ALS community, including people living with ALS and caregivers engaged in conversation with Premier Doug Ford, Minister of Health Sylvia Jones and other MPPs, creating space to share their stories, highlighting the Program’s impact and the importance of continued progress.
- Following the reception, on May 14 the Ontario government announced additional funding to the Sunnybrook ALS Clinic as part of the Ontario Provincial ALS Program, to support the clinic’s role in leading and overseeing Ontario’s multi-disciplinary ALS clinics. This investment helps ensure access to multi-disciplinary care is consistent and well-coordinated across the province – an encouraging step that ALS Canada, alongside the ALS community, will continue to build on by advocating for sustained investment needed to build on this progress.
- Learn more about ALS Canada’s Queen’s Park Day Reception.
2026 Ontario Pre-Budget Consultations
- ALS Canada participated in the provincial government’s 2026 Budget consultations through a written submission and an in-person discussion hosted by the Ministry of Finance.
- The submission highlighted the measurable impact delivered by the Ontario Provincial ALS Program for Ontarians affected by ALS and the health system by strengthening multi-disciplinary ALS clinics, improving access to essential equipment, and expanding community-based supports and urged the government
Canadian Collaboration to Cure ALS
- Momentum behind the advocacy for the Canadian Collaboration to Cure ALS continues to build, with ALS community advocates from across Canada building connections with their local MPs and amplifying the call for investment in ALS research.
- ALS Canada continues to actively engage with key federal ministries and stakeholders to mobilize support and accelerate progress toward a federal investment in the Canadian Collaboration to Cure ALS.
- Building awareness among parliamentarians remains a key focus, including through media opportunities that keep ALS on the national agenda. During ALS Awareness Month, Tammy Moore, CEO of ALS Canada published an op-ed in The Hill Times calling for federal investment to help close gaps in access to research, diagnosis, and care, and drawing attention to emerging evidence linking military service to a higher risk of ALS. With the federal budget on the horizon, advocacy efforts will continue over the summer months, ensuring the call for investment stays top of mind for decision-makers.
ALS Caucus Meeting – June 2, 2026
- On June 2, the ALS Caucus convened for the first time in 2026. This was especially meaningful as it took place on Lou Gehrig Day and at the beginning of June ALS Awareness Month. The ALS Caucus is a non-partisan forum that brings MPs and Senators together to raise awareness and discuss solutions to the urgent needs of people affected by ALS.
- ALS Canada was pleased to take part in the ALS Caucus meeting. Caucus discussions focussed on updates on the Canadian Collaboration to Cure ALS and upcoming parliamentary opportunities to advance the priorities of the ALS community during June ALS awareness month.
- Attendees Included:
- MP Peter Fragiskatos (London Centre), ALS Caucus Co-Chair
- MP Marie-Hélène Gaudreau (Laurentides—Labelle), ALS Caucus Co-Chair
- MP Elizabeth May (Saanich and the Gulf Islands)
- MP Ziad Aboultaif (Edmonton Manning)
2026 Federal Pre-Budget Consultation
- ALS Canada put forward a pre-budget submission on the Canadian Collaboration to Cure ALS, as part of the federal government’s pre-budget consultations in advance of the 2026 Federal Budget.
- The submission calls on the Government of Canada to invest $50 million over five years in the Canadian Collaboration to Cure ALS, a coordinated national research strategy that would scale four national initiatives, position Canada as a global leader in ALS research, and accelerate progress towards a cure.
- The proposed investment would include:
Cost of ALS in Canada Report
- ALS Canada has launched a national Cost of ALS Study to capture and quantify the social and financial impact of ALS in Canada today. The last national cost study was completed in 2014. Since then, the cost of living has increased; healthcare systems have faced ongoing pressures, and families continue to shoulder significant responsibility for care. Updated data is needed to ensure the realities of ALS are clearly understood.
- Guided by the lived experience of the ALS community, the report will serve as a powerful advocacy tool – translating what people affected by ALS already know about their daily lives into evidence that we can use to advocate for policies that better reflect the realities of this disease
- The final report is expected to be released in the coming months
- You can learn more about the Cost of ALS in Canada Report by viewing our webinar.
Changes to the Disability Tax Credit
- The federal government has announced proposed changes to the Disability Tax Credit (DTC). Notably, ALS is now specifically named among the conditions eligible for a streamlined application process. Other proposed changes include:
- Making the DTC a non-taxable benefit.
- Expanding the list of healthcare professionals who can certify eligibility.
- Allowing provincial and territorial public guardians and trustees to certify DTC eligibility for adults in their care for property matters.
- The DTC application process has long been a source of frustration for the ALS community. The explicit inclusion of ALS is a meaningful step that recognizes the realities of living with this condition and marks progress toward easing the barriers families encountered in accessing this support.
- While these are welcome steps forward, more work remains to improve access to the DTC. ALS Canada will continue to advocate for changes that increase the accessibility of the DTC.
- Learn more about the proposed changes here.
