UK Cystic Fibrosis Sufferers are Fighting Hard for Orkambi: Here’s How You Can Help

Orkambi (ivacaftor/lumacaftor) is the second precision medicine to be licensed for use in the UK by people with cystic fibrosis.

The catch? It is not currently provided by the National Health Service (NHS), except in rare cases on compassionate grounds.

Our partner Breathe With Me Strawfie Challenge states:

“Orkambi works on the root cause of cystic fibrosis instead of just treating the severity of the symptoms and it treats the F508del mutation, which around 40% of people with cystic fibrosis in the UK have.

Recent protests in Ireland have resulted in the Health Service Executive (HSE) giving access to Orkambi in that country. The Cystic Fibrosis Trust in the UK have arranged for protests to be held in London, Wales, Scotland and Northern Ireland on Monday, 26th June.”

“To gain wider public support for our fight for this drug, the CF community are aiming to engage the general public and rally them behind our cause. This is necessary because although there are 10,800 people in the UK with cystic fibrosis, that represents only 0.02% of the UK population. So even with the support of family and friends, we cannot make enough noise alone to generate the publicity we need.”

“No-one has more eloquently put the case for why the cystic fibrosis community needs this drug, than Lorraine Barnes, a campaigning CF mum who last year raised over £50,000 for the CF Trust.” 

Lorraine’s sons’ CF conditions have significantly deteriorated since the fight for Orkambi began, one having to endure surgery and horrific complications.

Lorraine’s Son Joseph

Cystic Fibrosis Week in the UK is June 19th through the 25th. To support the Orkambi protest, sharing posts and tweets on Monday, the 26th of June. You can also follow the Strawfie Challenge here.

Read more on Lorraine’s Blog here.


Do you have CF? Share your story with us here.

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