Hello Rob, I feel you pain.MY Daughter was diagnosed with P.N.H. She is on Solaris too.She maxed oit her insurance too.I don't know if you are aware of the fund that pays for the Solaris.It is avaiable free to P.N.H.patients.If you want to e-mail me at butterfly0557@yahoo.com,I will be gla to give you info.~~~Blessings to your health,Pamela
Alexion, has used a long long time and lots of money on developing Soliris aka eculizumab.. But the price is to high for any body to pay for it.. Reduce the price and save more lives..
Rob, I so hope you'll have the chance to keep using Soliris. I've been lucky to use it a little over a year now and my health has improved so much! In the beginning I feared that I'd have to stop using Soliris because of the whole process of making it legal and acceptabel to our heathcare system. I live in Belgium. I was one of the first to start using Soliris. I truly hope that somehow you'll be able to keep using Soliris.
Are you afraid to voice your disagreement with White House policy, join a rally, use bumper stickers, wear a politically charged t-shirt, for fear of reprisal by government, police,, FBI, Homeland Security, etc?" The answer is more often YES. Our government is using FEAR tactics to quiet those that disagree. The White House dissenters are called, racist, fear mongers, mislead, un-American, conspiracy nuts, left wing, right wing, ect. LET THE PEOPLE VOTE ON HEALTH CARE, NOT CONGRESS!
Hello Rob, I feel you pain.MY Daughter was diagnosed with P.N.H. She is on Solaris too.She maxed oit her insurance too.I don't know if you are aware of the fund that pays for the Solaris.It is avaiable free to P.N.H.patients.If you want to e-mail me at butterfly0557@yahoo.com,I will be gla to give you info.~~~Blessings to your health,Pamela
pamelaray57 1 year ago
Hallo Rob,
You are in my heart.
We are sharing the same disease, PNH.
Love fra Tina
LovefromDenmark 1 year ago
Alexion, has used a long long time and lots of money on developing Soliris aka eculizumab.. But the price is to high for any body to pay for it.. Reduce the price and save more lives..
Fuldgas 2 years ago
Rob, I so hope you'll have the chance to keep using Soliris. I've been lucky to use it a little over a year now and my health has improved so much! In the beginning I feared that I'd have to stop using Soliris because of the whole process of making it legal and acceptabel to our heathcare system. I live in Belgium. I was one of the first to start using Soliris. I truly hope that somehow you'll be able to keep using Soliris.
The best of luck to you and your family!
VDJ2006 2 years ago
This has been flagged as spam show
Are you afraid to voice your disagreement with White House policy, join a rally, use bumper stickers, wear a politically charged t-shirt, for fear of reprisal by government, police,, FBI, Homeland Security, etc?" The answer is more often YES. Our government is using FEAR tactics to quiet those that disagree. The White House dissenters are called, racist, fear mongers, mislead, un-American, conspiracy nuts, left wing, right wing, ect. LET THE PEOPLE VOTE ON HEALTH CARE, NOT CONGRESS!
fjchandler 2 years ago