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Commons Chamber
Medical Cannabis (Access) Bill - Fri 10 Dec 2021
No Department present

Mentions:
1: Jeff Smith (LAB - Manchester, Withington) could establish a patient-reported-outcome-measure study, a managed-access programme—as happened with Orkambi - Speech Link

Tweet
Paul Scully (Conservative - Sutton and Cheam) - @scullyp
30 Aug 2021, 9:21 a.m.

Probably the campaign that I'm most proud to have been involved with in my time as MP is alongside the @cftrust to get life changing treatment on the NHS (#orkambi & #trikafta). My breathlessness when running is nothing compared to those living with #cysticfibrosis

Link to Original Tweet

Closed Petition closed 3rd August 2021

Fund access to Kaftrio for CF patients in England in line with other UK nations - Final Signatures: 3,199

In Scotland, Wales and Northern Ireland the NHS is providing Kaftrio in line with US FDA regulations, in which anyone with one F508 gene and any other second gene can have Kaftrio, which has been proven to slow the decline of lung function, the primary cause of death for people with CF.

Download petition CSV

Found: The Government should work with NHS England (like they did with Orkambi) and/or provide specific extra

Lords Chamber
Medicines and Medical Devices Bill
Report stage - Tue 12 Jan 2021
Department of Health and Social Care

Mentions:
1: Baroness Sheehan (LDEM - Life peer) The row over the cystic fibrosis drug Orkambi went on for three years, with the NHS held to ransom, as - Speech Link
2: None followed with great interest the experience of the UK trying to get access to the cystic fibrosis drug Orkambi - Speech Link
3: None In response to the stalled negotiations and Vertex refusing to offer access to Orkambi on reasonable - Speech Link

Select Committee
Formal Minutes 2017-19

Formal Minutes Apr. 01 2021

Committee: Petitions Committee

Found: the motion “That this House has considered e- petition 209455 relating to access to the drug Orkambi

Select Committee
Formal Minutes 2016-17: List of closed petitions

Formal Minutes Apr. 01 2021

Committee: Petitions Committee

Found: hiring of Specialist Chefs from abroad 97 https://petition.parliament.uk/petitions/126412 Provide Orkambi

Grand Committee
Medicines and Medical Devices Bill
Committee stage:Committee: 2nd sitting (Hansard) - Mon 26 Oct 2020
Department of Health and Social Care

Mentions:
1: None interview in the Times in 2018, with reference to the NHS’s negotiations with Vertex over its drug Orkambi - Speech Link

Select Committee
Formal Minutes 2017-19: List of closed petitions

Formal Minutes Apr. 01 2021

Committee: Petitions Committee

Found: of contracts awarded to private bodies 493 https://petition.parliament.uk/petitions/209455 Make Orkambi

Lords Chamber
Trade Bill
Report stage - Mon 07 Dec 2020
Department for Business, Energy and Industrial Strategy

Mentions:
1: Baroness Sheehan (LDEM - Life peer) quite obscene profit-taking by pharmaceutical companies, as happened with Vertex’s cystic fibrosis drug Orkambi - Speech Link

Grand Committee
Trade Bill
Committee stage:Committee: 2nd sitting (Hansard) - Thu 01 Oct 2020
Department for Business, Energy and Industrial Strategy

Mentions:
1: Baroness Sheehan (LDEM - Life peer) There are also significant delays for cystic fibrosis patients to get access to the drug Orkambi given - Speech Link