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Cystic Fibrosis Trust

Orkambi Now update

Following last week's update from Vertex in response to a direct request from the Trust, Lynsey Beswick, Public Affairs Manager for the Trust, presents an overview of recent discussions between the NHS and Vertex, and a potential solution to end the agonising wait for people with cystic fibrosis (CF).

In June this year hundreds of you joined national protests for #Orkambinow,which called on Orkambi manufacturer Vertex and NHS bodies across the UK to find a solution that will finally allow people with CF access to the precision medicine.

Since then, we've been working to capitalise on the momentum you created, putting pressure on all parties to come to an agreement.

One solution on the table is a ‘portfolio approach’ similar to the deal that was struck recently in the Republic of Ireland, which ensured access to Orkambi for people with CF who could benefit (those age 12 and over with two copies of the F508del mutation).  

Significantly, this also incorporates future drugs, including treatments such as the triple therapy, as part of a long-term deal. This kind of approach could allow a significant reduction in the cost of Orkambi, while also ensuring that future treatments can be accessed much faster than within the current system – almost as soon as they've been approved by the European Medicines Agency.

Last week, in response to a request from the Trust for news, Vertex issued a statement providing a full update of the meetings held across all four nations since the protest. We were pleased to hear that talks are underway between NHS England and Vertex and that a number of meetings have also taken place with NHS bodies in Wales, Scotland and Northern Ireland over the summer.

We hope that these talks, which had previously stalled, will be instrumental in reaching an agreement in the UK as soon as possible – in the Republic of Ireland it took no fewer than 18 meetings to secure a similar deal for access to the drug, so the sooner these meetings start across the UK, the sooner people with CF can access the medicines they need.

In the meantime, we're not putting our placards down! Since the protest, we have had a fantastic response from the CF community and many of you have continued to write to and meet with over 100 parliamentarians; and 17 parliamentary questions relating to Orkambi have been tabled.

These actions are crucial to exerting pressure on the government and highlighting the importance and urgency of the issue. There is no doubt your tireless campaigning has been instrumental in prompting these meetings and we want you to know that we will continue to apply pressure to ensure that a workable solution is agreed as soon as possible.

Parliament is now back from recess and we are planning a number of UK-wide campaign actions for the autumn. Get the latest updates, and find out which parliamentarians have been lending their support to stopping the clock on cystic fibrosis, through our campaign page.

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