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Access to medicines - a winter of discontent is coming

Since our UK-wide #OrkambiNow protest, our campaign team has been building towards the next big step. Kicking-off with a dedicated meeting at Westminster, Lynsey Beswick, Public Affairs Officer at the Cystic Fibrosis Trust, presents an update and explains how you can get involved.

Today you may have heard about the Government’s response to the Accelerated Access Review, and the desire to speed up access to transformational treatments. I spoke to the BBC's Victoria Derbyshire programme this morning, to highlight the importance of this issue for people with cystic fibrosis.

While everyone’s eyes are on the issues around access to new medicines, we need to seize this momentum.

On 29 November we are bringing together MPs and the CF community to discuss Orkambi at a unique parliamentary event. MPs across all parties will be invited to hear your stories, and to meet members of the community.

It’s vital that you invite your MP to attend, and share your views on what access to Orkambi means to you and the CF community. Find out who your MP is and how to contact them here.

Use our template as a guide and personalise it with your story so that your MP can represent you fully.

Download the template

There will also be a limited number of places available to the CF community on a first come, first served basis. Please email the public affairs team to request a place. We regret that due to cross-infection, people with CF are unable to attend.

The fight for access to medicines is bigger than Westminster, it’s a UK-wide issue – so what are we doing in your area?

Northern Ireland

We are already rallying support from MLAs in Northern Ireland to sign a cross-party letter – which will be sent to Jeremy Hunt, Secretary of State and Richard Pengelly, Permanent Secretary at the Department of Health.

Over in Wales

We have worked with one of our supporters to table a petition for Orkambi to the Welsh assembly. This will go live in the coming weeks and we hope to reach 5,000 signatures from across the UK to trigger a parliamentary debate.

In Scotland

We are planning a debate at Holyrood around access to new medicines. We will be calling on our community to contact MSPs asking them to attend and to speak on your behalf. Watch this space for more information.

Stopping the clock takes time

In the meantime, we understand that meetings are still ongoing between Vertex, the various NHS bodies and the National Institute for Health and Care Excellence, but that this process is behind closed doors and could take time – in the Republic of Ireland it took no less than 18 meetings before an agreement was reached.

Finally, please remember that our fight for Orkambi is just the first step, and even if you don’t stand to benefit from this treatment directly we still need your help! Our campaign is part of a wider focus around access to a pipeline of new treatments in CF that will help us stop the clock on CF for everyone.

Thank you to all those who have been involved in our campaign so far and we hope that we can continue to count on your support.

For further information and updates please visit our campaign webpage or email publicaffairsteam@cysticfibrosis.org.uk.

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