Assistant Deputy Minister of Health, Bob Nakagawa, did not give us an answer today regarding the funding of Trey’s ERT through the BC government. We are very disappointed. He had a meeting with Deputy Minister of Health, Gordon Macatee, last Thursday, who asked that Bob give him more information before he makes a decision. From my understanding of our conversation, it sounds like because so many Enzyme Replacement Therapies are becoming available for enzyme deficiency diseases like MPS, they want to be very careful about the decision they make regarding Trey because they don’t want to set any precedents they can’t follow. The issue, Bob said, is financial. He said that they want to find a solution that is national, not just provincial or for Trey. His answer for why this had not been done already, considering all other developed countries in the world have a solution, was: “It’s complicated.” He has agreed to let me know by tomorrow afternoon when his next meeting with Gordon Macatee is.
