Rob Day: I Want to Be There for My Kids

In 1988, Rob Day was just a 19-year-old in a Pennsylvania art school when he started to notice he was getting winded more and more easily. He tried not to think about it, but people started to comment about how pale he looked. A long series of tests finally revealed the truth -- Rob had Paroxysmal Nocturnal Hemoglobinuria (PNH.)

Rob and other patients with PNH have a long physical and emotional struggle in front of them, dealing with a terrible illness. A generic pathway that could yield more affordable versions of their biologic medicine could at least give them some peace of mind and help to ease their financial burdens. If I could buy a less expensive version, I would be all for it, Rob said. Im all for generic brands. I hope Congress makes the right decision and votes against 12 years exclusivity. We need affordable medicines in the hands of patients much more quickly than that.

For more information about Rob and affordable healthcare, please visit: https://www.yearofaffordablehealth.com

Category:

Science & Technology

Tags:

• Health
• care
• drugs
• pharmaceutical
• pnh
• affordable
• treatment
• disease
• blood
• medicine
• reform

[pamelaray57]

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

[LovefromDenmark]

Hallo Rob,

You are in my heart.

We are sharing the same disease, PNH.

Love fra Tina

[Fuldgas]

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..

[VDJ2006]

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!