Maker of muscular dystrophy drug will stop supplying Canada, patients told

Résumé détaillé

Families have limited amount of time to find new supplier of deflazacort or switch to higher-priced drug not yet covered by most insurance plans

The manufacturer of a drug commonly used to treat Duchenne muscular dystrophy (DMD) has told Canadian patients it will no longer supply the drug to Canada, leaving families a limited amount of time to find a new supplier or switch to a new, higher-priced drug not yet covered by most insurance plans.

DMD is a progressive neuromuscular disease that causes muscle weakness, including in the lungs and heart. It is estimated to affect around 800 Canadian boys and men. The disease became known broadly through the efforts of the Davidson family of London, Ont., who started research charity Jesse’s Journey in the 1990s.

Until recently, no drug had been approved in Canada to treat DMD. Patients either took the common steroid prednisone off-label or were prescribed a drug called deflazacort, which they had to obtain through Health Canada’s Special Access Program.

Only one company – German pharmaceutical firm Cheplapharm – has supplied Canadian patients with deflazacort in recent years, through distributor Xediton Pharmaceuticals Inc.

On Monday, Xediton sent a letter written by Cheplapharm to DMD patient groups and Health Canada that said the German company would stop supplying Canadians because of supply-chain problems.

Cheplapharm said Canadians had been importing a portion of the deflazacort the company was making for British patients. But Cheplapharm was no longer able to supply Britain – and therefore Canada – because it could no longer source a key ingredient for the drug and it did not believe there was enough demand for the drug to justify building a new manufacturing network.

“The volumes remaining across markets still requiring Calcort, including the U.K. and Canada, are no longer sufficient to support a commercially and operationally feasible new end-to-end technology transfer and establishment of an independent supply chain,” Cheplapharm’s letter said, referring to a brand name of deflazacort.

Cheplapharm spokesperson Carsten Brandt said his company is aware of another…

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