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Debate: drugs for cystic fibrosis

6 June 2019

On Monday 10 June, MPs will debate a petition about access to drugs for cystic fibrosis.

On Monday 10 June, MPs will debate a petition urging the Government to ensure the NHS supply new lifesaving drugs, including Orkambi, for cystic fibrosis. Paul Scully MP, a member of the Petitions Committee, will open the debate.
                                                                                                                                
The petition, which has more than 108,000 signatures, states: “Children and young adults with cystic fibrosis endure lifelong suffering and early death. They need Orkambi and other precision medicines as they are developed. Sufferers in the European Union, United States and Australia can access the drugs, but not the UK. Hundreds have died in the three years since these drugs were licensed.”

The petitioner adds: “Despite an ever-increasing abundance of evidence as to the drugs' effectiveness, cystic fibrosis sufferers still do not have access. Case studies report miraculous improvements in health. Consultants nationwide have asked the NHS to make the drugs available.”
 
In response to the petition, the Government said: “The Government urges Vertex Pharmaceuticals to fully re-engage with the NICE appraisal process and to accept the offer the NHS made in July.”

It adds: “We understand the frustration of the cystic fibrosis community, however, it has been made clear to Vertex that its drugs need to be priced responsibly and that any re-assessment of Orkambi's effectiveness must be carried out via NICE's established processes.”

The debate comes just over a year after the last petition debate on cystic fibrosis drugs. 

Read last year's petition and Government response: https://petition.parliament.uk/petitions/209455
Watch last year's debate: https://www.parliamentlive.tv/Event/Index/b74bb8c9-5d04-4df7-9f19-1dbf498329e0
Read last year's transcript: https://hansard.parliament.uk/commons/2018-03-19/debates/41D2017B-E026-49FC-B94E-BCDB566AF1D6/OrkambiAndCysticFibrosis

There is also an ongoing Select Committee inquiry about the availability of Orkambi:
https://www.parliament.uk/business/committees/committees-a-z/commons-select/health-and-social-care-committee/inquiries/parliament-2017/availability-orkambi-on-nhs-inquiry-17-19/

Monday's debate will provide an opportunity for MPs to question a Government Minister directly on this topic.

 

Timing of the debate

The debate will start at 4.30pm and be opened by Paul Scully MP, a member of the Petitions Committee.

 

Why is this petition being debated?

The Petitions Committee has the power to schedule debates on e-petitions in the House of Commons Second Chamber, Westminster Hall.

In deciding which petitions should be debated, it takes into account how many people have signed the petition, the topicality of the issue raised, whether the issue has recently been debated in Parliament, and the breadth of interest among MPs.

 

What will the petition debate achieve?

Debates on petitions in Westminster Hall are general debates about the issues raised by the petition.

MPs can discuss the petition and, if they wish, ask questions about the Government's position on the issue or press the Government to take action.

A Government Minister takes part in the debate and answers the points raised.

These debates help to raise the profile of a campaign and could influence decision-making in Government and Parliament.

Petition debates in Westminster Hall cannot directly change the law or result in a vote to implement the request of the petition.

Creating new laws, or changing existing ones, can only be done through the parliamentary legislative process which involves a number of debates, and detailed consideration of the law in draft, in both the House of Commons and the House of Lords.

This process is normally started by the Government, although there are some ways in which individual MPs or members of the House of Lords who are not in the Government (known as "backbenchers") can ask Parliament to consider new laws.

 

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