Blog
RSS FeedPosted by Michael Wonder on 27 May 2019
NHS England wants money back guarantee on Orkambi
24 May 2019 - Vertex resisting real-world data proposal. ...
Posted by Michael Wonder on 20 May 2019
Theresa May urges US makers of cystic fibrosis drug to strike ‘crucial’ deal with NHS
17 May 2019 - Theresa May last night urged US makers of a drug that prolongs life for cystic fibrosis sufferers ...
Posted by Michael Wonder on 16 May 2019
Mum delivers 65 roses to Downing Street in bid to speed up NHS availability of vital cystic fibrosis drugs
16 May 2019 - Calls for NHS access to potentially life-saving drugs are growing, one year to the day after ...
Posted by Michael Wonder on 13 May 2019
MPs call for 'life-changing' Kuvan to be made affordable
11 May 2019 - A number of MPs are calling on a drug company to make a "life-changing" treatment affordable ...
Posted by Michael Wonder on 25 Apr 2019
NZORD supports rare medicine petitions to government
23 April 2019 - The National Organisation for Rare Disorders supports petitions for more effective, equitable outcomes for people with ...
Posted by Michael Wonder on 17 Apr 2019
Call for funding applications for medicines for rare disorders
17 April 2019 - PHARMAC invites pharmaceutical suppliers to submit funding applications for medicines for rare disorders. ...
Posted by Michael Wonder on 11 Apr 2019
Family faces deportation from Australia after son diagnosed with cystic fibrosis
10 April 2019 - Anthony and Christine Hyde's application for permanent residence in Australia has been rejected - because of their ...
Posted by Michael Wonder on 29 Mar 2019
Cystic fibrosis scandal: drugs deal moves a step closer to saving children
27 March 2019 - Officials are set to meet again “soon” with US drugs giant Vertex to “break the current impasse” ...
Posted by Michael Wonder on 27 Mar 2019
600 years’ supply of cystic fibrosis drug destroyed in price row
27 March 2019 - Nearly 8,000 packs of Orkambi, the breakthrough medicine for cystic fibrosis, have been destroyed by the ...
Posted by Michael Wonder on 21 Mar 2019
Is Orkambi deal close? Vertex meets again today with NHS England
21 March 2019 - Campaigners hopes rise after three year wait. ...
Posted by Michael Wonder on 12 Mar 2019
Optimism on Orkambi in England as talks to resume
12 March 2019 - Scotland's deal puts pressure on NHS England and NICE. ...
Posted by Michael Wonder on 11 Mar 2019
Cystic fibrosis breakthrough: vital drug could be made available as early as next month
8 March 2019 - A wonder drug that could dramatically improve the lives of thousands of cystic fibrosis patients may be ...
Posted by Michael Wonder on 08 Mar 2019
Campaigners call for NHS access to Orkambi as MP inquiry gets underway
8 March 2019 - Patients and campaigners took to the streets in London yesterday demanding NHS access to Vertex’ cystic ...
Posted by Michael Wonder on 08 Mar 2019
High price of cystic fibrosis drug not political, firm's boss tells MPs
8 March 2019 - CEO of company that makes Orkambi denies being ‘political minion’ for Donald Trump. ...
Posted by Michael Wonder on 06 Mar 2019
In UK and Ireland, SMA patients demand reimbursement for Spinraza
6 March 2019 - A drug appraisal committee of Britain’s NICE met in Manchester, England, for the third and final ...