PNH Treatments

[gandb77]

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

[triumphe64]

Call Leigh Clark at www.AAMDS.org. She can explain all of the options.

[GoodDay5150]

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