Availability of Orkambi on the NHS

09 November 2018

The Health and Social Care Committee publishes letters relating to the availability of Orkambi, and other drugs for the treatment of cystic fibrosis, on the NHS.

Request for documents

The Health and Social Care Committee has formally requested documents from Vertex Pharmaceuticals, NHS England and the National Institute for Health and Care Excellence (NICE) with regards to the ongoing negotiations for the provision of Orkambi, and other drugs for the treatment of cystic fibrosis, on the NHS. This request is in connection with its consideration of access for NHS patients to drugs where their pricing means they are not considered cost effective and, therefore, a good use of NHS or taxpayer resources.

The Committee’s request for papers includes the formal submissions and offers made by Vertex to NICE and NHS England, including those made throughout the negotiation period to date. The Committee has requested that NHS England provide their formal response to Vertex’s original offer and any formal updates to subsequent proposals, and that NICE provide an unredacted assessment of the clinical and cost effectiveness of the drugs presented to the NICE appraisal committee. It has also sought from NICE a memorandum to set the negotiations on Orkambi in the context of other negotiations on drugs whose pricing has not been considered cost-effective.

Publication of documents

The Committee has indicated to all parties that it would expect to publish the documents it receives unless an agreement between Vertex, NHS England and NICE is reached. It has given a deadline of the end of this month, 30 November, for provision of those documents.

The Committee's inquiry

The Committee hopes that negotiations are successful and that a deal can be reached which will ensure that Orkambi can be made available to NHS patients. It looks forward to hearing that agreement has been reached by the end of the month, in which case it has indicated that it would not be likely to progress its inquiry any further at the present time. If no agreement is reached by that date, it will consider further how to proceed.

The Committee’s inquiries in this area are currently concentrated on the provision of Orkambi, and the other drugs being developed by Vertex Pharmaceuticals for the treatment of cystic fibrosis. It is not, for the time being, seeking written submissions from sources other than NICE, NHS England and Vertex Pharmaceuticals. 

Further information

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