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I see they are still listing the Patient Advocate Foundation. We called them 2 years ago and were told that they no longer handled Aplastic Anemia cases. They didn't say why, and I don't know if they handle MDS or not, but I told somebody at AAMDSIF that, and she seemed surprised.
NeedyMeds has been a valuable resource for us. They don't offer any assistance themselves, but they tell you which medications you may be able to get covered and give you the forms to fill out for each of the drug companies. We've been able to get Neupogen, Procrit and Gengraf (cyclosporine) all comped. They don't make it easy, but when you don't have drug coverage you just have to do whatever you can. After Ken's first ATG we were paying $3,500/month just for drugs alone, and with no income coming in! Who can afford full price on these medications?
-Lisa
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