January 4, 2008 mcfadyena

Disappointing CDR News

In disappointing, but expected news, the CDR (aka. Common Drug Review) did NOT recommend Elaprase for funding. As defined by the Canadian Agency for Drugs and Technologies in Health, on January 4, 2008: “The Common Drug Review (CDR) conducts objective, rigorous reviews of the clinical and cost effectiveness of drugs, and provides formulary listing recommendations to the publicly funded drug plans in Canada (except Québec).” Next week, The Canadian MPS Society will be issuing a press release responding to the CDR’s decision. This does not mean that funding cannot be secured for people with MPS II, it just means that funding will continue to be a struggle and will continue to be decided on a case by case basis.
The CDR has incorrectly concluded that the effectiveness of Elaprase has not been established. In contrast to the CDR’s decision, Health Canada gave Elaprase a Priority Review based on their conclusions of efficacy and the life threatening nature of Hunter syndrome.
Coincidentally, global treatment recommendations for Elaprase have just been published.The CDR needs to make changes to the way it deals with rare disease drugs. It is clearly not able to properly value and assess rare disease therapies and has just created another barrier to patients with rare diseases trying to access approved and effective drugs in Canada. Canadian patients with rare diseases are at a serious disadvantage, and as far as I’m concerned, this is a human rights violation.

CONTACT US AND SHARE YOUR STORY!

We want to hear from you! Send us your story so we can share it with the world. Every person and family battling Hunter Syndrome has a unique story to tell - one of bravery, resilience, and perseverance. We'll share all stories online here and on our social media feeds!