Hi George. I am sorry to hear you have PNH. I was diagnsd in 2011 w/ PNH but I had the symptoms for abt 10 yrs prior. I had Kaiser/ (a large HMO in Colorado) when I was diagnosed. My hemo/onc at the time said that they would cover the cost of Soliris. I'm assuming he meant that I wld have been resp. for the co-pays up to my max. I nvr was given Soliris bcse the doc chngd his mind abt my treatment plan. I did have a succ. stem cell trans in December of 2011. Soliris is abt $400,000 a yr, and I suggest that you contact NORD/ National Org for Rare Diseases or Alexion for more info. Good luck in your treatment.
Mario
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