Although IV Elaprase has been approved in Canada and Trey is receiving the treatment (Trey was granted Special Access to use Elaprase through Health Canada’s Special Access Program before Health Canada’a approval; Health Canada Special Access Program), many other children with Hunter Syndrome in Canada have not been so fortunate. Although we are thrilled that Health Canada has approved Elaprase, this only means that is it available and approved for use in Canada.
Funding is decided on a province to province basis and many provinces are not supportive of funding expensive drugs for rare diseases. This is why Canada needs an Orphan Drug Policy so that lifesaving treatments can be granted to individuals with rare diseases as soon as they become available. For more information about the efforts to create an Orphan Drug Policy Click Here.
Meanwhile, researchers continue to work on a cure. Their work is dependent in large part on private funding, which often takes the form of fundraising and donations. Click Here to read about the research we are funding.