NHS supply new lifesaving drugs for Cystic Fibrosis like 11 other EU countries

This petition closed on 16 May 2019 with 108,144 signatures

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1. Make prescriptions free for everyone with Cystic Fibrosis - 5,384 signatures

All MPs who debated the petition in March were passionately in favour of supplying the drugs. Despite an ever-increasing abundance of evidence as to the drugs’ effectiveness, CF sufferers still do not have access. Case studies report miraculous improvements in health. Consultants nationwide have asked the NHS to make the drugs available. Doctors have expressed distress at seeing children die whilst the drug they need is on the shelf. After 3 yrs, conclude negotiations and fund these drugs.


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20,543 signatures - 19.0% of total

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Government Response

The Government urges Vertex Pharmaceuticals to fully re-engage with the NICE appraisal process and to accept the offer the NHS made in July.


NICE and NHS England are leading the dialogue with Vertex Pharmaceuticals around access to their portfolio of cystic fibrosis medicines. The Government fully supports the approach that NICE and NHS England are adopting.

NICE was established nearly two decades ago to act as the authoritative, independent, expert body for assessing the clinical and cost effectiveness of new drug treatments in this country. It is internationally respected and central to decisions about which treatments can be reimbursed on the NHS.

Whilst the Government understands the high level of interest in Orkambi, there is no justification for treating Vertex differently from the numerous other companies that engage with NICE, and the NICE appraisal process is both suitable and appropriate for evaluating the evidence Vertex have provided for their products.

We were disappointed by Vertex’s decision not to price Orkambi fairly following the guidance published by NICE two years ago, and by their more recent decision to unilaterally withdraw entirely from the NICE appraisal of Symkevi.

The final offer NHS England made to Vertex in July this year provided significant commercial flexibilities designed to assist the company in obtaining positive NICE recommendations across all existing licensed treatments and future pipeline products, with the intention of making them rapidly available to patients and in advance of any NICE appraisals concluding. These flexibilities were to complement the NICE appraisal process, not act as a substitute for it.

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. Vertex must now re-engage with the NICE appraisal process. I am encouraged that they attended a meeting with NICE on 4th October and again on 30th November to discuss next steps and that there is a continuing dialogue between all parties.

Department of Health and Social Care


MPs spoken contributions during 10 Jun 2019 petition debate

Conservative Paul Scully (View contribution) 2847 words Seema Kennedy 1908 words Mike Penning (View contribution) 855 words John Howell (View contribution) 653 words
Independent Stephen Hepburn 613 words
Labour Sharon Hodgson (View contribution) 1515 words Kerry McCarthy (View contribution) 1199 words Laura Smith 1030 words Clive Lewis (View contribution) 928 words
Liberal Democrat Sarah Wollaston 1053 words
Non-affiliated Lord Austin of Dudley (View contribution) 886 words
Scottish National Party Marion Fellows (View contribution) 911 words