October 1, 2014 is a day that Annette Sebey and her family will remember for a very long time. After many years (yes years) of fighting to have the treatment reimbursed, Annette had her first infusion in her home province today.

CAP President, Brad Crittenden was elated, “In what has seemed like a never-ending battle, Annette has struggled for so long to receive the same treatment that other patients across Canada have received for years. New Brunswick announced their Plan little more than a month ago and patients are already getting treated. It’s encouraging to see that they are partnering with Ontario, rather that taking the time to develop their own program. It should be more cost-effective, and will benefit patients sooner. We were also pleased to see that patients with four other rare diseases have been included. I can’t emphasize enough, that these are life-saving decisions affecting really people and families.

Annette’s first treatment

July 28, 2014 New Brunswick announced the New Brunswick Drugs for Rare Diseases Plan. This plan provides reimbursement for treatment of five rare diseases:

  • Aldurazyme for the treatment of Hurler and Hurler-Scheie forms of Mucopolysaccharidosis I;
  • Elaprase for the treatment of Hunter Syndrome;
  • Ilaris for the treatment of Cryopyrin-Associated Periodic Syndrome;
  • Myozyme for the treatment of Pompe disease; and
  • Zavesca for the treatment of Niemann Pick Type C.

Click for more information about the New Brunswick Drugs for Rare Diseases Plan

Tagged: getting treated