Cystic Fibrosis Trust’s Parliamentary Event: ‘Ending the wait: UK access to Orkambi and other new medicines’
Monday 19 November 2018 will mark three years since the drug Orkambi was licensed for use in the UK by the European Medicines Agency (EMA). Yet, people with cystic fibrosis are still not allowed access to the medicine while their health and quality of life declines.
In England current negotiations between the NHS and Vertex Pharmaceuticals, the drug’s manufacturer, have been underway since spring 2018 but have yet to reach a resolution. Elsewhere in Scotland, Wales and Northern Ireland no further progress has been made.
The Cystic Fibrosis Trust is keen to ensure an end to the three-year wait for access to new precision medicines for those living with cystic fibrosis across the UK.
The Trust will hold a Parliamentary event in the Houses of Parliament from 4–6pm on Monday 19 November to discuss access to medicines for people with cystic fibrosis, sponsored by Ian Austin MP.
Members of Parliament are keen to hear from their own constituents, so write to your MP to let them know about this event, explaining why it is important to you that they attend on your behalf. A template with further information to include can be found here.
Contact your MP
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:
Cross-party meeting: ‘Ending the wait: access to Orkambi and other new medicines in Scotland’
A cross-party meeting will be held at the Scottish Parliament at 5.15 pm on Wednesday 21 November to discuss access to medicines for cystic fibrosis in Scotland. The meeting will be chaired by Jackie Baillie MSP.
Three years after the licensing of Orkambi for use in the UK by the European Medicines Agency (EMA), people with CF in Scotland still do not have access to this treatment.
Please contact your MSP representatives and ask them to attend. The meeting will be an opportunity for MSPs to discuss challenges around access to Orkambi via the recommended PACS Tier Two system and support the next steps of the campaign in Scotland.
MSPs are keen to hear from their own constituents, so let them know about this meeting and explain why it is important that they attend on your behalf. Here are further details that you can include in your correspondence to your MSP.
A cross-party roundtable meeting will be held at the National Assembly for Wales at 6:30pm on Wednesday 14 November to discuss access to medicines for cystic fibrosis, and we're asking you to get in contact with your Assembly Members (AM) to ask them to attend. The meeting will be chaired by David Rees AM.
This will be an opportunity for AMs to be briefed on the issue, ask questions and to support the next steps for our campaign in Wales. AMs are keen to hear from their own constituents, so let them know about this meeting and explain why it is important to you that they attend on your behalf. Here are some further details that you can include in your correspondence.
Remember, you have regional Assembly Members as well as a constituency member, so please contact all five of them and help us to gain as much support as possible in Wales!
Find your AMs
Throughout September and October the Trust has 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
On 9 October, the Welsh Assembly petitions committee discussed the petition ‘Ensure access to the cystic fibrosis medicine, Orkambi as a matter of urgency’ for the fourth time. Information was received from Vertex Pharmaceuticals, the Cabinet Secretary for Health, Vaughan Gething and the Trust. The committee will put forward the Trust’s UKCF Registry solution for interim access and request a response from the Minister. We will provide further updates as we know more.
The Trust recently held an access to medicines meeting in Cardiff for the CF community and clinicians to provide an update on the campaign for Orkambi and the future pipeline of drugs for cystic fibrosis in Wales. Speakers on the day included the Trust's Chief Executive David Ramsden, Nick Medhurst, Head of Policy and Public Affairs, CF consultant Dr Dawn Lau and Cendl Hankins from the All Wales Adult Cystic Fibrosis Centre who highlighted the impact of new medicines for cystic fibrosis.
Thank you to all who attended the meeting both in person and online. You can watch a recording of the meeting here.
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