pharma – Muscular Dystrophy Canada

Community Statement: Update on Deflazacort®/Calcort® Availability

February 24, 2023 – In late January, we became aware of a possible Deflazacort®/Calcort® supply and access issue in Canada. Deflazacort is the most commonly used corticosteroid prescribed in Canada and an affordable option for our Canadian Duchenne muscular dystrophy community. We learned that the problem was primarily due to manufacturer and distributor changes and a need to increase the price.

Muscular Dystrophy Canada and Defeat Duchenne Canada partnered to resolve the issue quickly so a shortage could be avoided, and individuals wouldn’t have to potentially switch to prednisone (as this was a concern brought to us by families). At the same time, together, we worked directly with families to better understand the issue at a local (pharmacy) level.

While the impact did not become widespread, we know of a few Duchenne patients and families directly impacted.

We are pleased to report that a shipment of Deflazacort®/Calcort® arrived last week, and inventory is available for the entire country. There is a price increase (approximately $50 for 60 pills) and a change in format (pills in a box vs. sleeve format).

The new manufacturer has confirmed that the backlog in the market has been solved and will provide this critical product to the Canadian market from now on. We will continue to follow this issue closely as we recognize how vital Deflazacort is for people with Duchenne muscular dystrophy. We look forward to ensuring a sustainable supply of Deflazacort and good access to other approved drugs prescribed for managing and treating neuromuscular disorders in Canada.

If you are still experiencing challenges accessing Deflazacort®/Calcort®, please contact us at research@muscle.ca or call 1-800-567-2873 ext. 1114.

Thank you,

Stacey Lintern
Chief Executive Officer
Muscular Dystrophy Canada

Perry Esler
Executive Director
Defeat Duchenne Canada

Alberta Fourth Province to Expand Access to Spinraza™ for Patients Impacted with Spinal Muscular Atrophy

Alberta fourth province to expand access to SPINRAZA™ for patients impacted with Spinal Muscular Atrophy.

Muscular Dystrophy Canada (MDC) commends the Government of Alberta for joining Quebec, Saskatchewan, and Ontario in expanding access to SPINRAZA™, a life-changing treatment for individuals impacted with Spinal Muscular Atrophy (SMA).

In Alberta, the following patients will now be eligible for reimbursement of SPINRAZA™, in addition to Type 1 patients:

patients who are pre-symptomatic with two or three copies of SMN2, or
have had disease duration of less than six months, two copies of SMN2, and symptom onset the first week after birth and on or before seven months of age, or
are under the age of 18 with symptom onset after six months of age, regardless of the ability to walk.
Other patients who do not meet the expanded funding criteria may be considered in exceptional cases.

Patients Living with Spinal Muscular Atrophy (SMA) in the Province of Saskatchewan Gain Access to Spinraza™

April 22, 2019

Dear members of the SMA community,

In response to the requests received by patients living with Spinal Muscular Atrophy (SMA), Biogen Canada would like to provide this latest progress regarding coverage of SPINRAZA™ (nusinersen) in the province of Saskatchewan.

Biogen Canada is delighted to inform you that on April 12, 2019, the Government of Saskatchewan informed treating physicians in their province that patients living with Spinal Muscular Atrophy (SMA) have access to SPINRAZA™. The Saskatchewan Ministry of Health has made the decision to expand coverage of SPINRAZA™ to include the following, in addition to existing Type I patients:

Patients who are pre-symptomatic with two or three copies of the SMN2 gene;
Patients up to age 18, with symptom onset after six months of age and who have never achieved the ability to walk independently;
Patients that may have achieved the ability to walk independently (type III) as well as type II and type III patients over the age of 18 are encouraged to talk to their treating physician to apply for a case by case coverage.