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PNH Paroxysmal nocturnal hemoglobinuria

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  #1  
Old Mon Feb 16, 2015, 09:41 AM
gandb77 gandb77 is offline
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PNH Treatments

I am 83 years old and have recently been diagnosed with PNH. As I understand the only treatment available is soliris, and the treatment must continue for life.
Since I am on medicare I assume that Medicare will cover 80% of the cost.
MY real question is "How are all the other people with PNH and on Soliris paying for these treatments." I understand the costs are in six figures yearly.
Any insight into this would be very helpful
Thank George
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Old Mon Feb 16, 2015, 12:20 PM
triumphe64 triumphe64 is offline
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Call Leigh Clark at www.AAMDS.org. She can explain all of the options.
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Dallas, Texas - Age 75 - Pure Red Cell Aplasia since March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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Old Mon Feb 16, 2015, 04:01 PM
GoodDay5150 GoodDay5150 is offline
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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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