We’ve received a bit of new information. The hospital has tentatively said no to funding Trey’s ERT. We’ll get final confirmation today, but from the doctors I have talked to, we can expect a ‘no.’ Their reason is that there is not enough evidence that Elaprase (the ERT for Trey) will work and especially not for children under 5. After talking to Kirsten Harkins, the exec. Director of the Canadian MPS Society, this is the problem with not having an Orphan Drug Policy. This is what everyone will say as a reason to not pay for ERT, until we get a Policy. There was enough evidence for the FDA to approve Elaprase and there is enough evidence for other funders to fund it. And also, none of these ERT trials were done on kids under 5. But because MPS is progressive, there’s even more reason to treat kids as young as possible. So now it’s onto the government for funding. Dr. Lorne Clarke and Dr. Sylvia Stockler have a meeting with Bob Nakagawa, Deputy Minister of Health, on Friday to discuss funding and Dr. Clarke says we can expect an answer in 3-5 weeks. So for now, more waiting. One down and onto the next.
