As most people who read this page know, I have a rare form of Muscular Dystrophy called Pompe's Disease. Most people also know that I started treatment for this disease (enzyme replacement therapy) in a clinical trial with a new drug called Myozyme. This drug has not been approved yet so the drug company pays for it so far, however, when it becomes approved I don't know if government health care or my Dad's health care (that still covers me because I live at home) will pay for it.

Here are a couple interesting articles about the costs of drugs for rare disorders.

This article talks about orphan drug status (drugs for rare diseases) and the costs associated with them.

This article talks about a woman who is on enzyme therapy (a different disease than mine, but the same company makes it) and how she feels about her drug being so expensive. I don't think I'm supposed to broadcast how much my drug costs and it is supposed to come down in price once approved, but currently it costs significantly more than the $601,000 a year that the drug for the woman in the article costs. If my drug comes down in price by half, it will still cost significantly more than $601,000 a year. I have no idea how to feel about my life being worth that much money. I didn't a year ago when I started treatment and I don't now.

As always, any questions, feel free to ask.

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