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I am sorry to hear that your son has PNH/ MDS. I had a trans for PNH only abt 3 yrs ago and I am mostly doing well. My HMO/ spec clinic at the time advised me that I would need a trans; I had PNH for 8-10 yrs w/o knowing it or being diagnosed. The HMO spec. was going to treat me w/ Soliris but then changed his mind since he himself had nvr treated anyone w/ the drug and had some concerns. He did have a patient that was part of the trial b4 it was approved. I have been told that some insurance providers will advise patients that a trans is in order due to the high cost of Soliris. But a trans and all of the associated costs and follow up treatment and meds is also xpnsve. I wish you all luck and mp prayers are w/ you.
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