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We need your support so join our CF Army for access to precision medicine

Updated: Mar 1, 2019

Help us make our voice heard on Thursday 7th March


On Thursday 7th March, the Health and Social Care Committee will hold a public hearing on the availability and pricing of Orkambi and other cystic fibrosis precision drugs manufactured by Vertex Pharmaceuticals.

On that day the Cystic Fibrosis Trust will lead a protest outside of the Houses of Parliament: https://www.cysticfibrosis.org.uk/yourvoice


The UK cystic fibrosis community have been fighting for over three years for access to Orkambi, a drug that works at the root cause of CF, instead of just treating the symptoms. Orkambi can slow the decline in lung function (the main cause of death for those living with CF) by 42%. It can reduce the need for hospitalisation by 61%.


In recent weeks our campaign for access to all precision medicines for cystic fibrosis to be available on the NHS has been picked up by national media across the UK.


On Thursday, 7th March we need our voice to be heard across the United Kingdom – in England, Wales, Northern Ireland and even in Scotland (where an interim deal for Orkambi has recently been agreed).


After three years during which time more than 220 people with CF (who would have been eligible to try Orkambi) have died, we are exhausted, angry and in disbelief that our 10,800 strong community of cystic fibrosis patients, along with each individual patients’ personal army of family and friends, are being ignored - sidelined. People who have been unlucky enough to be born with a genetic disease are being left to decline and die – simply because Vertex's CF precision medicines have been deemed as too expensive to be made available on the NHS.


So we are looking to recruit an army of helpers across the UK to help us make our voice heard.


(This is the UK cystic fibrosis community asking for your help – We are not speaking on behalf of the Cystic Fibrosis Trust.)


Between Monday 4th March and Sunday 10th March, we would like people to support us online in the following way:

Take the 60 second straw breathing challenge known as the ‘StrawfieChallenge’ – This involves breathing through a (paper/eco) straw for 60 seconds while holding your nose to get a small appreciation of what life would be like if you had to struggle for every breath. Post a photo or video online of yourself taking the challenge, with a comment about how it felt to have to fight for breath. Share our petition link with the post: https://petition.parliament.uk/petitions/231602





Please use any/all of these hashtags when posting:


#Orkambi

#StrawfieChallenge #BreatheWithMe

#Fight2Breathe

#OrkambiNow #DailyExpressCrusade4CF #OrkambiandCFDrugPipeline #CFArmy










Five-year-old Ivy Weir has joined with her MP, Stephen Morgan, MP for Portsmouth South, to challenge all 650 MPs in the UK to take this challenge – now we also need everyone else to get involved.



Take the #StrawfieChallenge and Tweet your MP to take the challenge too.


Ivy’s MP Strawfie Challenge: https://www.facebook.com/gemma.daysh/videos/10156886601342707/


LINK TO POST ABOUT MPs WHO HAVE TAKEN THE STRAWFIE CHALLENGE

https://www.facebook.com/strawfiechallenge/posts/2258902321001313


We need access to Orkambi and Symkevi NOW - and the Triple Combination Therapy CF drugs as soon as they become available. Delays cost lives and each life is precious. Will you join us?


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"Breathe With Me and you will see how hard it is, to live your life, when breathing is as hard as this"

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Fight cystic fibrosis. Together We Fight.