My new friend.

I want you to remember how I was a year ago this week.  I dressed as a doll for Halloween in my dialysis clinic to cheer myself up, then came home in a wheelchair and threw up the rest of the day.  I wrote my monologue about feeling abandoned, betrayed, angry, and sad.  I was at my absolute lowest.

There is a girl in that same place right now, except instead of having had kidney failure for 15 years, she just got it six months ago.  Instead of being 32, she is 22 and terrified.  Instead of having a husband with health insurance, she has a baby and no insurance.  This illness came out of nowhere for her.  And she can't afford Soliris to get better. 

Remember when I told you all that Soliris costs $500,000 a year for aHUS patients?  Well, that is the cost from Alexion, the company that makes it.  My explanations of benefits say $52,000 every dosage.  EVERY DOSAGE.  And we need it once every two weeks.  I will let you do the math.  It is horrendous, and we need it every day for the rest of my life in order to survive.  This girl doesn't have insurance, and Obamacare doesn't kick in until March.  That still gives her five months she has to wait to get her life-saving drug.  

Something is wrong with this picture.  I don't know if things are getting better with health care, but no one should have to be a billionaire to afford to survive.  Understand that people like her and I don't care about politics.  We don't have time!  We are just trying to survive.  It is the only important thing.  And we have to leave the bickering to those in charge and trust that they will make changes that will help.  That is the frustration of living with a chronic illness like this.  It isn't cancer.  It doesn't have a huge billion dollar industry to make sure we get all the meds we need.  It is a rare disease that will ultimately end up killing those of us who can't get treatment.  

I am one of the lucky ones, but there are many more like me out there that need help NOW.