Elaprase, the drug that Trey needs has been approved by the FDA. Now the battle really begins to get Trey the treatment here in Canada. Because Health Canada has not approved Elaprase, and Canada does not have an Orphan Drug Policy (a policy regarding treatments that are needed by very very few people), this will be an uphill battle.
Our doctor, Dr. Sylvia Stockler, has applied to the government for Special Access for Trey. We should hear about this in the coming weeks. If this is granted, it becomes a matter of finding someone to fund the treatment – which will run in the hundred of thousands per year. Funding could be provided by the hospital, the pharmaceutical company or the government.
Once this is in place, Trey will have access to Enzyme Replacement Therapy.