I have a few friends with my gene combo on Kalydeco and it has changed their lives! I want to feel better, I want to breathe better, I want to cough less, I want to have more energy. This pill has done it for them!
I tried to see if my insurance would cover the Kalydeco off label for me, but they didn't like the $307,000 per year price tag. So, I'm going to try to get on it by going the research route. The other thing I'm hoping is that if I get accepted that I don't get placebo for the first 6 months.
That's a lot of hopes and wishes for one post!
8 comments:
We need to never stop hoping and wishing! Good luck to you and I'm praying things will go well tomorrow!
Will crossed fingers do? Bring your best game to Pittsburgh, Mama - hoping real hard this works out for you!
praying you get in!
My Prayers are with you Stacey. You are so young and beautiful, God Bless You.
June
Hi Stacey,
We have created MIAMI - an award-winning patient centred intelligence platform, accessible through mobile devices and the web which allows users to manage their medicines, health and wellbeing, and build a relationship with their health practitioners.
We are currently embarking on a project to service the UK CF population and will be soon expanding overseas. As a CF patient yourself and someone who is deeply involved with the CF community through your blog, we would appreciate your feedback on how to best meet the needs of the CF community.
Is it possible to have your email address and tell you more about us and arrange a chat with you about CF?
Thank you.
Maya Petrova
Marketing Executive
Hello Maya,
Sure! I can be reached at thebenes@msn.com
Hoping all your "hopes" come true!!!
I wish you all the best! I hope you get accepted for the trial. Stay strong and stay positive!
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