ALS standard of care

ALS is a progressive, terminal disease that is not yet curable. While there are treatments available in Canada, most focus on symptom relief and do not significantly alter the progression of the disease.

Although a cure has not yet been found, ALS research is ongoing worldwide, offering hope for future breakthroughs that may significantly impact the progression and management of ALS.

There is a lot of information and misinformation about treatments for ALS. It is important to educate yourself about treatment options from reliable sources.

The standard of care for any Canadian diagnosed with ALS is outlined in the Canadian ALS Best Practice Recommendations (BPRs).The BPRs reflect the Canadian healthcare system’s reality and address issues relevant to Canada, including timeliness of care, disease-modifying therapies, medical assistance in dying (MAiD), and caregiver support.

Because ALS is not yet a curable disease, it is important for people living with ALS to get access to multidisciplinary care. Those followed by a multidisciplinary clinic have been shown to have better outcomes, including improved survival, fewer hospital admissions, increased use of adaptive equipment, and enhanced quality of life.

In addition to the treatments outlined below, your ALS clinician may prescribe other medications and therapies to help manage ALS symptoms. These may include:

  • Medications to address pain, muscle twitches, tight limbs, cramps, and excess salivation, if needed.
  • Antidepressants to help with the emotional aspects of living with ALS, in addition to counselling and social work.
  • Nuedexta® to treat pseudobulbar affect.
  • Physical therapy to maximize existing capabilities and prevent further loss of motion.

ALS treatments in the Canadian drug access process

Please find information on treatments available in Canada below. To learn more about how drugs become approved and accessible in Canada, visit our page on this topic.

Disclaimer

ALS Canada does not endorse or recommend any specific therapies. Please consult your ALS clinician for information and advice on specific therapies.

RADICAVA Oral Suspension (edaravone) is the oral liquid form of RADICAVA, developed by Mitsubishi Tanabe Pharma Corporation (MTP-CA).

Current status of the therapy

In November 2022, Health Canada approved RADICAVA Oral Suspension after a 180-day priority review. As of December 15, 2023, the therapy is available in all provinces through their public formularies.

RADICAVA IV (edaravone) is an intravenous medication for the treatment of ALS, developed by Mitsubishi Tanabe Pharma Corporation (MTP-CA).

Current status of the therapy

On October 10, 2024, Mitsubishi Tanabe Pharma Canada announced that RADICAVA IV will be discontinued for use in Canada as part of the transition to RADICAVA Oral Suspension.

RILUTEK (riluzole) is an oral tablet therapy for the treatment of ALS, developed by Sanofi-Aventis.

Current status of the therapy

Health Canada approved RILUTEK (riluzole) for use in Canada and it is available in all provinces and territories through their public formularies. A generic version of RILUTEK (riluzole) is available as well.

Tofersen is an investigational therapy for the treatment of ALS in adults with a pathogenic variant in the SOD1 gene, developed by Biogen.

Current status of the therapy

Tofersen is currently available to eligible individuals through Health Canada’s Special Access Program (SAP).
In March 2024, Health Canada accepted a New Drug Submission (NDS) for tofersen.

ALBRIOZA (AMX0035) is a combination of two compounds that was investigated for the treatment of ALS, developed by Amylyx Pharmaceuticals.

Current status of the therapy

On April 4, 2024, Amylyx Pharmaceuticals announced, based on additional clinical trial data that did not demonstrate any significant benefit to people living with ALS, that they have started a process with Health Canada to discontinue the marketing authorization for ALBRIOZA. This means that ALBRIOZA will no longer be available for new patients in Canada. People currently on the therapy in Canada who, in consultation with their physician, wish to stay on treatment can be transitioned to a free drug program.

ALBRIOZA was approved by Health Canada under the Notice of Compliance with Conditions (NOC/c) pathway in June 2022. The conditions to maintain approval involved confirmation of benefit through a larger clinical trial, called PHOENIX, which was announced to be negative on all key outcomes in 2024. ALBRIOZA was marketed as RELYVRIO in the United States.

Complementary healthcare

Complementary and alternative healthcare refers to practices that complement conventional medicine if used in combination. They are not meant to change how the disease progresses but may provide relief from symptoms and make day-to-day life more comfortable for people with ALS.

Complementary therapies include meditation, hypnosis, acupuncture, massage, and other physical and mental therapies used to relieve anxiety, stress, stiffness, pain, and discomfort. They may be covered under some private or group insurance plans if prescribed and/or delivered by a registered physiotherapist. For more information, please access the ALS Guide: A resource for people living with ALS.

ALS Guide: A resource for people living with ALS

Receiving a diagnosis of ALS can be overwhelming. You may experience many different emotions, and you may feel the need to learn more about how this complex disease will affect you.

If you are thinking of trying any complementary or alternative healthcare treatments, it is important to consult with your doctor first and to seek a licensed, accredited practitioner for complementary therapy.

Alternative therapies for ALS

For other alternative therapies for ALS, please talk to your ALS clinician. You can also find more information on the resources below:

Cannabis and ALS

Is cannabis safe for people with ALS? Some people with ALS use cannabis to help treat their symptoms.

Dr. Richard Bedlack, Director of the Duke University ALS Clinic in the US, is also the founder of ALSUntangled, a resource that reviews alternative and off-label treatments, with the goal of helping people with ALS make more informed decisions about them. On Twitter (http://twitter.com/ALSUntangled), ALS patients can ask questions and receive answers about off-label or alternative ALS therapies. You do not need a Twitter account to view previous questions and answers.

Visit the website to look at completed reviews of alternative ALS treatments and their level of evidence:

Disclaimer

The information on this page comes from sources that the ALS Society of Canada deems reliable and is provided for general information purposes only. It is not intended to replace personalized medical assessment and management of ALS. The ALS Society of Canada disclaims any liability for the accuracy thereof and does not intend to disseminate either medical or legal advice.

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