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A brighter future for ALS patients

Radicava is now covered under Quebec public health insurance

The first drug to be given Health Canada approval for amyotrophic lateral sclerosis (ALS) in more than two decades is now covered by Quebec public health insurance, a major victory for ALS patients and their families.

On April 29, 2020, La Régie de l'assurance maladie du Québec (RAMQ) added Radicava to its list of drugs covered under public health insurance in Quebec. Radicava, also known as edaravone, is an intravenous infusion treatment for ALS, a rapidly progressive and neurodegenerative disease. Approximately 3,000 Canadians are living with ALS. Eighty per cent of people with ALS die within two to five years after diagnosis.

Radicava has been shown to slow loss of physical function. Developed over a 13-year period, Radicava was approved by the FDA for use in the US in 2017, and by Health Canada in 2018. In recent years, patients, families, ALS clinicians, researchers and the ALS societies across Canada have pushed for greater access to the drug.

Intended for ALS patients under specific medical conditions, patients should consult their doctor for more information.

Quotes

“It’s with great emotion that I learn this morning that all Quebecers with a doctor’s prescription can obtain Radicava. It’s been a long, hard battle. In essence, we walked in the footsteps of the relentless patient advocate, Nancy Roch, who was the first person to seek access to this drug. I would like to thank the journalists and members of the media who have helped us, and especially Minister McCann. You promised to help me and kept your word.” - Mario Goupil, patient advocate whose wife Lisette has ALS.

“The collective voice of the ALS community is one of unity, strength, determination and hope. Together, our advocacy efforts and pleas for access to treatments previously unavailable in Quebec and Canada were heard and we are truly grateful for the timely actions taken by the Quebec Government.” - Claudine Cook, Executive Director, ALS Society of Quebec

“The availability of Radicava for ALS patients in Quebec is the most significant step forward in the treatment of this disease in over 20 years. Along with new treatments that are in clinical trials here right now, we can look to a future where ALS is a treatable disease. Thank you, Quebec for supporting our patients” - Dr. Angela Genge, Director, Clinical Research Unit and ALS Program at The Neuro (Montreal Neurological Institute-Hospital)

“In these challenging times, my ALS patients are reminding me how one has to focus on small daily improvements to see hopeful signs of a better future,” - Dr. Nicolas Dupré, Neurologist, CHU de Québec and Full Professor, Université Laval

‘’We welcome this decision, which will allow more of our patients to benefit from this evidence-based treatment. This is an important milestone in the recognition of therapeutic needs in ALS and in access to treatment for rare diseases," - Dr. Geneviève Matte, Director of the ALS clinic at CHUM, researcher at the CRCHUM and co-chair of CALS (Canadian ALS Research Network).

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The Neuro (Montreal Neurological Institute-Hospital)is a bilingual academic healthcare institution. We are a۲ݮƵ research and teaching institute; delivering high-quality patient care, as part of the Neuroscience Mission of the ۲ݮƵ University Health Centre.We areproud to be a Killam Institution, supported by the Killam Trusts.

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