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:

  • Address the disparities in access to multi-disciplinary ALS care
    Provide a $3.4 million incremental investment to ALS Clinics to standardize and enhance existing care models, optimizing ALS care to meet the Canadian Best Practice Recommendations for the Management of ALS.
  • Improve the quality of life and help people living with ALS maintain their independence, dignity, and safety
    Allocate $3.2 million in sustainable funds to ALS Canada’s Community Services and Equipment Programs, ensuring people throughout the province have access to the right equipment and assistive devices at the right time. This will improve quality of life and help people living with ALS maintain independence, dignity, and safety for themselves and their caregivers.
  • Provide coordinated oversight of ALS care
    Formation of a secretariat to oversee and coordinate ALS care and facilitate comprehensive data collection, efficient knowledge dissemination, and strategic system planning.
  • Ensure equitable ALS care in northern and rural Ontario
    Develop a regional strategy to provide equitable and accessible ALS care in northern and rural Ontario, ensuring that people living with ALS receive timely care regardless of their geographic location.

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

Posted in: Advocacy