He was on the trial but before the results were in (it showed 50% improvement), the drug was made FDA approved. Though the trial doctors promised that he would receive the drug from them if it showed effective, they didn't follow through. Now that it is FDA approved, we have to go through Medicaid, and they don't pay for it.
Responses (1)
pledge6 Feb 2012
Hello AKRN. I researched your question and can understand your frustration. The cost of this drug on a daily basis is enormous. The best I might suggest is to get a local politician involved. Not knowing if you had anything in writin, but even if you didn't, he was a part of the study and has a paper record of being treated with the Carbaglu. I feel for you for its certainly a sad situation when a company uses a patient, as a part of a clinical trial, then renegs on thier offer. Good health and wishes to you,pledge
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There are patient assistance progrms by most Drug Manufactures. If you could list who makes this drug, maybe someone can steer you in their direction. A lot of these plans give you the drug free if the patient qualifies, & it sounds like yours does. Just a thought... Mary632009
Hello Mary, the cost of the drug, based upon a persons weight, on a daily basis is an average $6.000.00 yes... 6 thousand dollars per day. Since the drug company has already said no, I can't see that company offering any kind of assistance, through a Patient Assistance Program. Its an extremely expensive medication, the monthly cost easily exceeds $150.000.00 (thats a conservative figure) Sad to mention those figures, the cost is simply inconceivable,pledge
You got that right! Holy Cow! I thought my shots were expensive at a thousand a month, & Garys are $1,200 for 4 shots! Yikes! That's just freaking out rageous! Maybe we all ought to buy a lottery ticket & see if we can help them out if we win? Mary
Sad isn't it? Unreal. See you friend.