The Rt Hon Jeremy Hunt MP Secretary of State for Health and Social Care Department of Health and Social Care Ministerial Correspondence and Public Enquiries Unit 39 Victoria Street London SW1H 0EU Our Ref: ZA25939 19 April 2018 Dear Jeremy We are writing to ask that you meet with us to explore what further efforts the Government can make to expedite access to ground-breaking drugs for people with cystic fibrosis in England. You will be aware that in 2016, NICE was not able to recommend the use of cystic fibrosis treatment, Orkambi, on the NHS due to uncertainty around its long-term value, impact and costeffectiveness. You will also be aware that the drug s manufacturer, Vertex Pharmaceuticals, submitted a fresh proposal to NICE and NHS England last month. It has been over two years since Orkambi was granted its license by the EMA and 18 months since NICE s recommendation called Orkambi an important and effective medicine for the management of cystic fibrosis. During this period, the treatment has been available to patient communities in the USA and several European nations and its license has been expanded to include treatment of younger children with this life-limiting, progressive genetic disorder. The Government s response to Sir Hugh Taylor s important Accelerated Access Review opens by stating: The Government s ambition is that NHS patients should be among the first in the world to get life-changing treatments. Achieving this goal is only possible by working in close partnership with our world-leading life sciences sector. In the context of the current situation relating to Orkambi, and with a new cystic fibrosis medicine developed by Vertex Pharmaceuticals, Symdeko, due to have its marketing authorisation confirmed by the European Medicines Agency (EMA) in the coming weeks, will you agree to meet with us, the company and the Cystic Fibrosis Trust to discuss this matter that is of the utmost urgency to the thousands of people and families that await progress?
I would be very grateful if you could set out what the government is doing to address these concerns. Many thanks Yours ever Ian Austin Member of Parliament for Dudley North Rt Hon Diane Abbott MP Bim Afolami MP Heidi Alexander MP Heidi Allen MP Sir David Amess MP Tonia Antoniazzi MP Adrian Bailey MP Guto Bebb MP Rt Hon Ben Bradshaw MP Rt Hon Hilary Benn MP Crispin Blunt MP Rt Hon Tom Brake MP Richard Burden MP Ruth Cadbury MP Gregory Campbell MP Ronnie Campbell MP Bambos Charalambous MP Simon Clarke MP Rt Hon Ann Clywd MP
Ann Coffey MP Rosie Cooper Marsha de Cordova MP Jim Cunningham MP Nic Dakin MP Rt Hon Sir Edward Davey MP Philip Davies MP Anneliese Dodds MP Rt Hon Nigel Dodds MP Rt Hon Jeffrey M. Donaldson MP Jack Dromey MP Louise Ellman MP Nigel Evans MP Paul Farrelly MP Tim Farron MP Vicky Foxcroft MP James Frith MP Hugh Gaffney MP Preet Kaur Gill MP James Gray MP Paul Girvan MP Kate Green MP Lilian Greenwood MP Rt Hon David Hanson MP Emma Hardy MP
Helen Hayes MP Gordon Henderson MP Stephen Hepburn MP Lady Sylvia Hermon MP Sharon Hodgson MP Rt Hon George Howarth MP John Howell MP Rt Hon Sir Lindsay Hoyle MP Dr Rupa Huq MP Diana Johnson MP Darren Jones MP Mike Kane MP Gillian Keegan MP Liz Kendall MP Rt Hon Sir Greg Knight MP Peter Kyle MP Ben Lake MP Rt Hon Norman Lamb MP Rt Hon David Lammy MP Karen Lee MP Jeremy Lefroy MP Rt Hon Sir Oliver Letwin MP Ivan Lewis MP David Linden MP Emma Little-Pengelly MP Julia Lopez MP
Stephen Lloyd MP Caroline Lucas MP Rachel Maskell MP Sandy Martin MP Kerry McCarthy MP Rt Hon John Mcdonnell MP Alison McGovern MP Madeleine Moon MP Layla Moran MP Stephen Morgan MP Ian Murray MP Lisa Nandy MP Brendan O hara MP Jared O hara MP Ian Paisley MP Teresa Pearce MP Rt Hon Sir Mike Penning MP Matthew Pennycook MP John Penrose MP Jess Philips MP Jo Platt MP Luke Pollard MP Mark Prisk MP Faisal Rashid MP Rachel Reeves MP
Marie Rimmer MP Gavin Robinson MP Rt Hon Joan Ryan MP Jim Shannon MP Virendra Sharma MP Tulip Siddiq MP David Simpson MP Rt Iain Duncan Smith MP Nick Smith MP Karin Smyth MP Gareth Snell MP Alex Sobel MP Rt Hon John Spellar MP Rt Hon Dame Caroline Spellman MP Bob Stewart MP Iain Stewart MP Gary Streeter MP Wes Streeting MP Julian Sturdy MP Paul Sweeney MP Jo Swinson MP Alison Thewliss MP Tom Tugenhat MP Karl Turner MP Derek Twigg MP Thelma Walker MP
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