October 27, 2006 mcfadyena

So Frustrating

This whole world of medical services, funding, and the Canadian Health system in general is so frustrating. It is like no one cares that Trey is this beautiful little boy who needs treatment. If what he has and what he needs done doesn’t fit into “the rules” then “they” can’t help us. We’re having trouble getting ERT because, according to our government, there’s not enough evidence it works, even though kids in other countries are getting it no problem and trials have proven it effective. Ryan’s extended health plan won’t cover ERT or CBT’s because Ryan doesn’t have “that” policy, and MSP doesn’t cover any “experimental” treatments…doors just seem to be getting shut in our faces everywhere we turn. Yet we know of many other families who have had their ERT or CBT’s paid for. We know there’s a flaw in our health care system when no one will pay for life saving treatment for our son. We’re not giving up, as we know these treatments have and are being paid for with other families, but I just wish it just wasn’t such a hard and frustrating road. Learning to work with a diagnosis like Hunter Syndrome is hard enough…now we have to fight our system too. Although I must say, we are getting used to this fight. Just one of those days.


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