Cystic Fibrosis Trust’s Parliamentary Event: ‘Ending the wait: UK access to Orkambi and other new medicines’
On Monday 19 November 2018, which marked three years since the drug Orkambi was licensed for use in the UK by the European Medicines Agency (EMA), the Trust held a Parliamentary event in the Houses of Parliament to discuss access to medicines for people with cystic fibrosis, sponsored by Ian Austin MP.
Find out whether your MP attended here.
Early Day Motion
We have been working with the Rt. Hon Sir Mike Penning who has tabled an Early Day Motion (EDM). Find out how you can contact your MP and ask them to sign ‘EDM 1327’ to support our campaign.
Read the latest update on the Stopping the Clock campaign from David Ramsden Chief Executive at the Trust.
On Wednesday 5 September, the Trust met with Matt Hancock MP, Secretary of State for Health and Social Care, to talk about the Government’s position in future negotiations for Orkambi and other treatments. Read what was said and the minister's response here.
Ahead of a meeting between NICE, Vertex Pharmaceuticals and NHS England on 27 September who met to discuss access to medicines for people with cystic fibrosis on Monday 24 September, the Chief Executive of the Trust, David Ramsden, wrote to their respective CEOs, to call for a positive outcome on access to Orkambi for people living with cystic fibrosis.
We have sent a cross-party letter to Jeremy Hunt, Secretary of State for Health and Department of Health Permanent Secretary, Richard Pengelly, calling for a timely resolution to the ongoing negotiations between Vertex and Health and Social Care Northern Ireland. These letters have been signed by 66 MLAs from a number of different parties.
Read the letters:
We have received a response to our letters from Richard Pengelly, which you can read here:
Vertex Pharmaceuticals has agreed to make submissions for its cystic fibrosis medicines, Orkambi and Symkevi, to the Scottish Medicines Consortium (SMC). The First Minister, Nicola Sturgeon, has responded to an oral question from Jackie Baillie MSP on 20 December confirming that a price agreement has been reached and agreed between Vertex and the Scottish Government pending a submission of both medicines. In the meantime, patients in Scotland can access the treatments in the interim via PACs Tier 2 patient access scheme. For further information on this scheme please speak with your CF team.
A cross-party meeting was held at the Scottish Parliament a on Wednesday 21 November to discuss access to medicines for cystic fibrosis in Scotland. The meeting was organised and chaired by Jackie Baillie MSP.
For more information about the meeting, have a look at the blog by Nick Medhurst, Head of Policy and Public Affairs at the Trust.
A cross-party roundtable meeting was held at the National Assembly for Wales at 6:30pm on Wednesday 14 November to discuss access to medicines for cystic fibrosis.The meeting was chaired by David Rees AM.
This was an opportunity for AMs to be briefed on the issue, ask questions and to support the next steps for our campaign in Wales, during a week marking three years since Orkambi was licensed for use in the UK. Michelle Brown, Andrew R. T. Davies, Llyr Gruffydd, Jane Hutt, Mark Isherwood, Caroline Jones, David Rees ( Chair), Jack Sargeant and Bethan Sayed all attended the meeting or sent a representative on their behalf.
David Rees and his cross-party colleagues will meet privately with the Cabinet Secretary for Health and Social Services, Vaughan Gething AM, and will offer their support and assistance with Sarah Wollaston MP’s Westminster inquiry.
Find your AMs
Throughout September and October the Trust met with Assembly members regarding the campaign for access to medicines. So far, we have engaged with Llyr Gruffydd, Paul Davies, Andrew R T Davies, Vikki Howells, Mark Isherwood, Jane Hutt, Michelle Brown, Angela Burns, Darren Millar, John Griffiths, Bethan Sayed, Janet Finch-Saunders. Written and oral questions continue to be raised by members across the Assembly.
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