Deflazacort FDA approval and funding for those who cannot afford it

To get the money that people deserve. My name is Adam, I am a 23 year old male from northwestern Pennsylvania. I have Duchenne Muscular Dystrophy. millions of others like me, male, or female have or will be born with one out of the 47 different types of Muscular Dystrophy. I have been in an experimental drug study since I was roughly 8 or 9 years of age. I first started out taking the steroid Prednisone, I took that until I was about 11 or 12 I believe. Soon after that, my doctor's at Rochester University told me that they could no longer get the drug from Mexico anymore, they were going to refer me to Bloorview MacMillan Children's Center in Toronto, Ontario, Canada to enter the study for a Prednisone sister drug by the name of Deflazacort, which is a corticosteroid, this drug is still not FDA approved after many summits where a team of doctor's known as Cynergy are meeting with Congress to get the drug approved. Well I am now 23 and it is still not approved. I have been in a power wheelchair since I was 16. Prednisone is approved, but why isn't mine? I need this drug, it basically is the one thing prolonging my life, some may say, well don't you suffer more because of that, I say no, I am too young to die and quite frankly have a lot going for me, I have friends and family who mean the world to me, and a best friend that I would risk my own life for. The biggest obstacle at this point in my life, is that the doctors in Canada were paying for my meds, the Canadian government has stopped paying for it, because they can no longer afford it, well, I now need to pay out of pocket, I cannot expect my parents to help me with the whole bill by themselves, I just can't, to get a years supply of Deflazacort would cost me $800.00 per year, I am on a fixed income of rougly $630.00 per month from an SSI check, I could save some money each month to afford that, but it would take a long time, my insurance will not cover it because with it being a non FDA approved drug, it would be illegal for insurance to cover it. Basically the US Food and Drug Administration is saying that they will not cover a life-sustaining drug, because of its dangerous side effects, I can tell you for a fact that being on this drug for roughly 12 years give or take a few that the side effects are not even remotely dangerous. Basically this drug should be covered under my insurance and under my access card, it is my civil right to choose to want to live. I'm asking the world to not only do this for me to afford my life saving drug, but to also help the millions of others like me who cannot afford this and other drugs to save their lives. One voice is unfortunately not loud enough, so I need the billions and billions of people in our world to band together and help our fellow brothers and sisters. I will be passing this around myspace and many other social networking sites to get the word out, including e-mail. As a concerned and caring US citizen I am asking you from the bottom of my heart to help me and my fellow brothers and sisters to live long healthy lives. Thank you to the whole world!!