GET INVOLVED! I’m going to do a special episode of the podcast in the next few weeks about lockdown. Do you want to share your Cystic Fibrosis experience (good/bad/average) from the past 15 weeks? Send me a DM 😊
A heart rending appeal from a Kent mother for government to use 'extraordinary powers' to get access to life extending drug
#CF#orkambi https://t.co/H8DfWJxAbI
@MrDeanP @CFisNoParty50 @NHSEngland@VertexPharma@cftrust £500M divided by 5 years, divided by 10,000 CF patients (as the deal covered all 3 drugs) is £10,000 per patient per year, no way would @VertexPharma accept <10% of the asking price. They need to meet in the middle. Also, how can Scotland afford it?
@MattHancock Wow. How insensitive. I feel physically sick. It’s great that research is happening don’t get me wrong but what about all those suffering with Cystic Fibrosis. The research has been done and drugs made yet access denied and people are dying over cost
We’re supporting the @CFHolidayFund in our shop. We have a collection tin at our till, all proceeds go towards a break away for families with #cysticfibrosis