On Monday 26 June we held a day of action for Orkambi calling urgently on the drug’s manufacturer Vertex, the NHS and governments across the UK to agree on an affordable price that can make the life-changing drug immediately available to those who so desperately need it.
The cystic fibrosis (CF) community protested outside of Holyrood, Stormont, the Welsh Assembly and Downing Street, while hundreds of people with CF and supporters took part at home by sharing their stories on social media using the hashtag #OrkambiNow. Read some of the stories shared by the community online.
Trust Chief Executive David Ramsden wrote to Vertex and the NHS in all four UK nations appealing to them to reach an agreement on pricing for Orkambi and end the wait.
Read the letters
We will be sharing the responses from NHS directors and Vertex as and when we receive them – please continue to check back for further developments.
Lobby your local politician
While we continue to push for a decision on Orkambi, you can keep up the pressure on the Government by lobbying your local politicians using our template letters for England, Wales, Scotland and Northern Ireland. We would encourage you to personalise your template
letter as much as you can – politicians respond well to personal
stories, so let them know what Orkambi could do for you, and why it’s so
important that the treatment is made available without delay.
Download the template letter and find details of your MP and their email address on the parliament website.
Download the template letter and find details of your AM and their email address on the National Assembly of Wales website.
Download the template letter and find details of your MSP and their email address on the Scottish Parliament website.
Download the template letter and find details of your MLA and their email address on the Northern Ireland Assembly website.
Help us keep track of which politicians have been contacted by
copying us into your emails to your MPs, AMs, MLAs or MSPs, using the
email address: email@example.com.
Download a list of all the parliamentarians across the UK who have supported our Orkambi campaign.
Keep sharing your stories
Share why you need #OrkambiNow by sharing our posters and images on social media - don't forget to include your own stories.
Download our social media images:
Print off one of our posters, fill in your own story and then share on social media:
What is Orkambi?
Orkambi is a precision medicine that treats the F508del mutation, the most common CF mutation, which affects around 40% of people with CF across the UK. It has been licensed for use by people with CF in the UK, but is not currently provided by the NHS to the people who need it, except in rare cases on compassionate grounds. Find out more about Orkambi.
For further information, please email our public affairs team.