Cystic fibrosis scandal: fury over US firm's 'refusal' to set price for life-saving drugs

11 February 2019 - A US drugs firm is "playing with people's lives" by refusing to do a deal over Orkambi, ...

Read more →

Vertex calls for changes to NICE as cystic fibrosis drug profits soar

6 February 2019 - Vertex has revealed financial figures that are likely to go down well with investors, but not ...

Read more →

Vertex fears its triplet will also face UK reimbursement battle

6 February 2019 - Vertex Pharmaceuticals' cystic fibrosis business grew more than 40% in 2018, partially because of reimbursement victories in ...

Read more →

UK patient activist group takes aim at Orkambi patent

4 February 2019 - Calls to bypass patent adds to pressure on Vertex. ...

Read more →

Calls for action on patients denied £100,000 cystic fibrosis drug

4 February 2019 - Ministers urged to consider revoking patent on life-extending Orkambi, which NHS cannot afford. ...

Read more →

Vertex an “extreme outlier” in pricing and behaviour, says NHS England

31 January 2019 - Members of parliament aim to break three year deadlock. ...

Read more →

XLH patients to get routine access to first new therapy in 30 years

10 October 2018 - For the first time in more than 30 years children and young adults in England and ...

Read more →

Sobi secures NHS reimbursement for Ravicti

23 August 2018 - Rare disease group Swedish Orphan Biovitrum (Sobi) says it has gained NHS England reimbursement for Ravicti ...

Read more →

'You have the medicine that can make me feel much better': boy, 8, pens letter asking drug company to lower prices

14 August 2018 - Watch eight-year-old Luis Walker, who has cystic fibrosis, read his letter to a pharmaceutical company urging ...

Read more →

Vertex, NHS England no closer to Orkambi settlement

9 July 2018 - Vertex and NHS England remain locked in a battle over the provision of cystic fibrosis drug ...

Read more →

Vertex calls NHS England ‘outrageous’ as Orkambi talks stall again

5 July 2018 - Public row about confidential pricing talks drags on. ...

Read more →

Improving access to new treatments in rare diseases

21 June 2018 - Emily Crossley, co-founder and co-chief executive of Duchenne UK, tells us how a ground-breaking HERCULES project ...

Read more →

Patients call for end to two-year row over cystic fibrosis drug funding

19 June 2018 - UK patients are stepping up efforts to resolve the “heartbreaking” row that is denying their families ...

Read more →

Rare disease therapy Crysvita to be barred from NHS

15 June 2018 - Children and young people with X-linked hypophosphataemia are unlikely to get routine access to Kyowa Kirin’s ...

Read more →

NICE says no to Chiesi’s rare disease drug

23 May 2018 - England’s cost effectiveness watchdog NICE has published draft guidance not recommending Chiesi’s enzyme replacement therapy Lamzede ...

Read more →