Blog
RSS FeedPosted by Michael Wonder on 20 May 2019
Europe responding to gene therapy challenge, but picture remains fragmented
20 May 2019 - Germany, Italy and England using outcomes-based deals. ...
Posted by Michael Wonder on 15 May 2019
NHS chief hails SMA drug deal – and was that a swipe at Vertex?
15 May 2019 - Children in England with the rare muscle wasting disease spinal muscular atrophy will get access to ...
Posted by Michael Wonder on 15 May 2019
NICE recommends first ever treatment for children with rare muscle wasting condition
15 May 2019 - Children with the rare genetic disorder spinal muscular atrophy can now be treated with nusinersen after NICE ...
Posted by Michael Wonder on 02 May 2019
SMA patients in Saskatchewan, Canada, gain wider access to Spinraza
1 May 2019 - The Canadian province of Saskatchewan has joined that of Quebec in granting access to Spinraza (nusinersen) ...
Posted by Michael Wonder on 02 May 2019
SMA petition: family forced to move to Australia to get daughters treated
2 May 2019 - A family have moved to Australia in order to get their daughters the treatment they need. ...
Posted by Michael Wonder on 16 Apr 2019
Akcea steals march on Alnylam with NICE approval
16 April 2019 - Advantage to Tegsedi over Onpattro. ...
Posted by Michael Wonder on 15 Apr 2019
Kiwi father's emotional plea to Jacinda Ardern to fund life saving drug for rare disease
15 April 2019 - The parents of two young girls diagnosed with a rare disease have urged Prime Minister Jacinda ...
Posted by Michael Wonder on 14 Apr 2019
Why PHARMAC should fund SMA drug
14 April 2019 - How must it feel to make decisions upon which lives depend? ...
Posted by Michael Wonder on 14 Apr 2019
Saving Charlotte: Bennett to present Parliament with petition calling for funding of SMA drug
14 April 2019 - A 15,000-strong petition calling on PHARMAC to fund a drug to treat spinal muscular atrophy is ...
Posted by Michael Wonder on 04 Apr 2019
Ontario woman with rare disease forced to pay hundreds of thousands to cover ‘miracle drug’
3 April 2019 - For 21 years, a Whitby woman and her family have been in and out of hospitals, ...
Posted by Michael Wonder on 10 Mar 2019
Family of sick toddler launches petition urging PHARMAC to fund life-extending drug Spinraza
10 March 2019 - A Pukekohe family has launched a petition urging PHARMAC to fund a drug for spinal muscular ...
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 ...
Posted by Michael Wonder on 04 Mar 2019
Panel backs provincial funding for expensive drug to treat rare disease. But only for children.
4 March 2019 - Provincial governments should expand public funding for one of the world’s most expensive medications to cover ...
Posted by Michael Wonder on 03 Mar 2019
Biogen responds to CADTH’s updated recommendation regarding coverage for Spinraza
1 March 2019 - CADTH has expanded their recommendations for public reimbursement for SMA patients. ...
Posted by Michael Wonder on 27 Feb 2019
'Depriving sick babies of right to life' - NZORD boss blasts PHARMAC decision to defer Spinraza
28 February 2019 - Clinical experts deciding whether to fund a drug that would prolong the life of babies with ...