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Inquiry to look at Orkambi availability

On Friday, the Health and Social Care Committee announced an inquiry into the availability of Orkambi and other cystic fibrosis medicines on the NHS, which could open up discussions between Vertex, NHS England and NICE to public scrutiny. Following the announcement, we asked Policy and Evidence Manager Anna Evans to explain a bit of the background to the committee and what comes next. *Edited on 30 November 2018*

The announcement followed several meetings between the Cystic Fibrosis Trust and members of the Health and Social Care Committee, as part of a concerted effort from the Trust campaigning for decision-makers to demonstrate accountability. We hope it leads to a deal between the three bodies as we continue to campaign for fair, sustainable access to the most advanced cystic fibrosis medicines for everyone who could benefit.

1. What is the Health and Social Care Committee?

The Health and Social Care Committee is a group of MPs with the power to publicly scrutinise the expenditure, administration and policy of the Department of Health and Social Care.  

Commons Committees like the Health and Social Care Committee are made up of MPs from different political parties, reflecting the overall makeup of the House of Commons. This means these committees are nonpartisan. The Chair of the Health and Social Care Committee is Dr Sarah Wollaston, Conservative Party MP for Totnes.

2. What is an inquiry?

An inquiry is a formal process of gathering information about an issue. Having chosen a topic to examine, the Committee takes evidence, either in writing, for example by requesting documents, or through public hearings where members of the Committee can ask questions to relevant witnesses, for example politicians, civil servants or public figures.

In this inquiry into the availability of Orkambi, the Health and Social Care Committee has requested several written documents from Vertex, NICE, and NHS England. The Committee has asked for information about the negotiations, including formal offers made by Vertex to NHS England and NICE and the responses to those offers from NHS England.

3. What does this mean?

Vertex, NHS England, and NICE have until 30 November to provide the information requested by the Committee. These documents will be published on the Health and Social Care Committee website, unless an agreement between Vertex, NHS England, and NICE is reached. It is unclear by when the Committee would make these documents public, if agreement is not reached.

The ability of the Committee to request this highly sensitive information, which hasn’t been public before, is powerful. We hope that it acts to add greater urgency to discussions and avoid further dispute in the public domain.

4. What does this mean if I live in Scotland, Wales, or Northern Ireland

The inquiry is primarily focussed on access in England, because medicines access is a devolved power. However, it will also examine the original NICE appraisal of Orkambi which has informed access in Wales and Northern Ireland. For more information on the work we’re doing in the devolved nations please see here

*Also*

On Saturday 10 November, an open letter was published on the British Medical Journal (BMJ) website written by the UK Cystic Fibrosis Medical Association, a membership group of medical clinicians in the UK with a speciality interest in cystic fibrosis, calling for: “Vertex to work with the SMC, NICE and UK commissioners to strike a fair deal […] to enable us to deliver the best care possible for people with CF in the UK.” The letter was endorsed by 98 consultants from UK CF centres.

Find out more about the fight for access to precision medicines in your area, or join our campaigning mailing list for the latest updates.