Cystic fibrosis drugs to be provided by NHS

The following letter has been sent to those constituents who have contacted Julia Lopez MP regarding the provision of vital cystic fibrosis drugs, such as Orkambi. Last week, the Government announced that they had secured a deal with the manufacturer of Orkambi, Symkevi and Kalydeco, Vertex Pharmaceuticals, to provide these drugs free of charge on the NHS. We hope that this update will bring comfort to cystic fibrosis sufferers and their families within the constituency. Please do contact us if we may assist in any issues in accessing these medicines.


We are writing to you further to Julia Lopez MP’s recent correspondence in September on cystic fibrosis and the availability of treatments for the condition. Julia is currently on maternity leave, however, we wanted to write to you with some fantastic news from the Secretary of State for Health and Social Care, Matt Hancock MP.

For two years, Julia has been pleased to campaign with parliamentary colleagues on behalf of local cystic fibrosis sufferers and their families so that they may access the vital drugs they need. You will know that this has been a long process, involving many parliamentary debates, representations to ministers as well as cross-party efforts to the National Institute for Care Excellence (NICE) and Vertex Pharmaceuticals.

We are pleased that the Secretary of State has today announced that NHS England have now secured an agreement with Vertex Pharmaceuticals to make available all of their UK-licenced cystic fibrosis medicines: Orkambi, Symkevi and Kalydeco.

NHS England advise that clinicians will be able to prescribe these medicines, free of charge, within 30 days and that there is no cap on the number of patients that may receive these drugs. We are thrilled that these vital drugs will be made promptly available to those suffering from cystic fibrosis.

For a long time, the NHS and NICE have been in negotiations with Vertex Pharmaceuticals regarding the availability of these medicines at a price that represents value to the NHS and in a way that ensures that they can be subject to full NICE appraisal. The Secretary of State said that the deal represents great value for money for the NHS. It also includes a condition that in due course Vertex will also submit its new triple therapy for NICE appraisal, potentially paving the way for further treatments to become available.

We hope that this letter and the enclosed comments from the Secretary of State, will bring some relief and comfort regarding the future availability of vital cystic fibrosis medicines. Please contact us if you or a family member encounter any issues obtaining these medicines as we would be very happy to help resolve them.

With best wishes,

Julia Lopez MP Parliamentary Team


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Dear Colleague Letter from the Secretary of State for Health and Social Care 50.98 KB