On Wednesday, June 24, 2015 and Monday, August 3, 2015, CBC reporter, Kelly Crowe, featured a story on “The National” entitled, “The Real Cost of the World’s Most Expensive Drug”. aHUS Canada Board of Director, Sonia Girotto, has since provided a response to the CBC on behalf of aHUS Canada.
Sonia wrote about the urgent need for publicly funded access to Soliris (eculizumab) the only approved treatment in Canada for aHUS (atypical Hemolytic Uremic Syndrome). She described the devastating effects of this disease and expressed concerns with the amount of time provincial governments across Canada are forcing patients to wait for access to treatment.
Sonia also expressed disappointment in the CBC for not focusing on those that matter most in this issue – the patients – particularly those patients who have lost partial or full kidney function because they continue to wait for access to Soliris. Other jurisdictions throughout the world, including the Province of Quebec, already make Soliris accessible through public funding.
aHUS Canada urges provincial governments across Canada to act quickly to make Soliris accessible to all patients at risk of this catastrophic disease, a disease that threatens organs, limbs and lives.
To read Sonia’s full response please click here: aHUS Canada – CBC News Response We encourage the aHUS community to share a copy of this response with their local MPPs/MLAs.