Blog
RSS FeedPosted 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 ...
Posted by Michael Wonder on 18 Feb 2019
Decision on spinal muscular atrophy treatment Spinraza deferred
18 February 2019 - PHARMAC's decision to defer a decision on funding the only treatment for spinal muscular atrophy (SMA) ...
Posted by Michael Wonder on 12 Dec 2018
NICE says no to rival Alnylam and Akcea amyloidosis drugs – but deal could be done
12 December 2018 - Room for manoeuvre after initial rejection. ...
Posted by Michael Wonder on 12 Nov 2018
Billion dollar drug company wants to be 'reimbursed' with taxpayer funding
11 November 2018 - An American drug company which hopes to treat New Zealand children for a rare genetic disorder ...
Posted by Michael Wonder on 05 Nov 2018
$1 million treatment could save our infants from the orphan disease
4 November 2018 - A $1 million wonder drug labelled as a "game changer" for treating the leading genetic cause ...
Posted by Michael Wonder on 04 Oct 2018
Babies with spinal muscular atrophy to be covered for life-saving but costly Spinraza drug
3 October 2018 - Canadian children with a rare and often fatal neuromuscular disorder are about to gain public funding ...
Posted by Michael Wonder on 03 Oct 2018
Biogen Canada and pan-Canadian Pharmaceutical Alliance reach agreement on access to first and only approved treatment for spinal muscular atrophy in Canada
3 October 2018 - Biogen has resubmitted for a recommendation for broader access with updated clinical trial data. ...
Posted by Michael Wonder on 05 Sep 2018
Hand surgeon's career 'saved by gene-silencing drug'
5 September 2018 - Hand surgeon Carlos Heras-Palou said his career "would have been finished" in six months without the treatment. ...
Posted by Michael Wonder on 29 Aug 2018
Life-changing drug Spinraza for spinal muscular atrophy patients costing adults at least $500,000
29 August 2018 - In a small lounge in Essendon, with his parents by his side, Chris Kessaris sat in ...
Posted by Michael Wonder on 16 Aug 2018
SMA groups outraged over UK rejection of Spinraza coverage as too expensive
16 August 2018 - Devastating. Heartbreaking. A death sentence for an estimated 1,000 children with spinal muscular atrophy (SMA). ...
Posted by Michael Wonder on 14 Aug 2018
NICE would welcome further discussions about access to spinal muscular atrophy drug nusinersen
14 August 2018 - NICE hopes for further talks over nusinersen for treating a rare genetic disorder; spinal muscular atrophy. ...
Posted by Michael Wonder on 08 May 2018
Guaranteeing essential services - record investment in health
8 May 2018 - The 2018–19 Budget is guaranteeing the essential health services that Australians rely on, with a $12.4 billion ...
Posted by Michael Wonder on 07 May 2018
Life-saving medicine listed for spinal muscular atrophy
6 May 2018 - The Australian Government will provide $241 million to list a vital and life-saving medicine which treats spinal ...
Posted by Michael Wonder on 06 May 2018
'It's magic': families, advocates celebrate lifesaving drug announcement
7 May 2018 - It’s not a cure, but for Bethan McElwee the drug Spinraza is the difference between her ...
Posted by Michael Wonder on 03 May 2018
Treatment for families battling a devastating rare disease
3 May 2018 - New Zealand infants suffering from a rare neuromuscular condition may soon be eligible for compassionate access ...