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Cystic Fibrosis Trust

Stopping the Clock – 2017 is almost done, but we’re not!

This year has seen some important steps for our campaign for access to medicines, including a day of protest at all four UK government sites. Now as 2017 draws to a close, Public Affairs Manager Lynsey Beswick presents a final round-up of the work the Trust and the community is doing to stop the clock on cystic fibrosis (CF).

The latest on Orkambi 

Last week the Trust brought together parliamentarians and families affected by CF at an event in Westminster, sponsored by Ian Austin, MP for Dudley North, to speak about access to Orkambi and other new future pipeline medicines for cystic fibrosis.

The event, attended by over 70 parents, MPs and the Trusts’ Chief Executive David Ramsden, was organised to highlight our ongoing campaign and secure cross-party support on the issue of access to medicines.

The event helped to highlight the plight of many of those living with CF, who are still waiting to access Orkambi two years after it was licensed. People like me.

In this time, I like many others with the condition have had to helplessly watch my own health significantly deteriorate, knowing that a drug exists that has been clinically proven to slow decline, but is currently unavailable on the NHS.

Following the event many of the MPs in attendance have pledged to pursue Life Sciences Minister Lord O’ Shaughnessy, Health Minister Jeremy Hunt and NHS England. Others will table parliamentary questions to highlight the issue.

Thank you to all of you who took the time to write to your MP or attend in person and help make the event a success.

North of the border

In Scotland we are pleased to announce that a motion for debate has been submitted in the Scottish Parliament and we hope to confirm a date in the coming weeks. Once we do, we will be calling those of you living in Scotland to write to your MSP and ask them to represent you at the debate. Please look out for further updates on this.

We need your help in Wales

In the Valleys and beyond it’s vital that you continue to sign and share a petition tabled by supporter Rhian Barrance to secure a debate on Orkambi in the Welsh Assembly. We need at least 5,000 signatures and we are over half way there – but we still have a long way to go before 31 December when the petition closes!

Remember anyone can sign the petition – you don’t have to be a resident of Wales.

Cross-party collaboration in Northern Ireland

We await a response of the cross-party letter from the 66 MLAs to Jeremy Hunt, as Secretary of State for Health and Richard Pengelley, Permanent Secretary, calling for access to Orkambi in Northern Ireland.

And finally…

We want to say a huge thank you to all you for putting Stopping the Clock on CF on the political agenda in 2017, and for all your efforts to push for #OrkambiNow. Whether you have lobbied politicians, joined our protests, signed petitions or shared our campaign on social media, we appreciate your ongoing support.

Join our campaign team to get involved with Stopping the Clock and receive updates on our campaigning actions.

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