Members of Spinal Muscular Atrophy Ireland and their supporters outside Leinster House
Welcome news today that Spinraza is now approved by the HSE. This is the first ever treatment for children with SMA. I know how hard the long journey to get here has been for families but very glad children in Ireland will now have access
— Simon Harris TD (@SimonHarrisTD) June 11, 2019
Delighted to be able to share the news that #Spinraza has today been approved by the HSE. This will come as an enormous relief to many children, many parents, families and friends all over Ireland. Well done to everyone who worked so hard on getting this result.
— Stephen Donnelly (@DonnellyStephen) June 11, 2019
While we welcome this positive announcement by Minister @SimonHarrisTD we are still waiting for the full details of the approval.
All at SMA Ireland and all people with SMA are deeply concerned that the HSE/Government may apply an age based cut off to treatment to save costs. https://t.co/ngjxRBBtQC— SMA Ireland (@SMAIrelandCom) June 11, 2019
We genuinely hope that reason and common sense has held sway and that treatment will be available for ALL people with SMA.
When more details are available SMA Ireland will make a full statement. #Spinraza4All #no1leftbehind
— SMA Ireland (@SMAIrelandCom) June 11, 2019
HSE approves Spinraza after lengthy campaign by patients (Paul Cullen, The Irish Times)
Pic: SMA Ireland
How much?
In the UK, the manufacturer Biogen was looking for £400,000 a year (€445,000) when it was turned down by the NHS. Last month, the NHS changed its mind and is now funding the drug but won’t disclose the cost.
In Ireland,Biogen had been looking for €600,000 a year in the first year of treatment.
I recommend this well-informed article on the effects of making extremely expensive treatments available out of a finite health budget.
The devil will, as usual, be in the detail. SMA rightly saying ‘we are still waiting for the full details of the approval’
not surprised with this chain of events. it’s how harris conducts his business, 1: hears about something positive. 2: welcomes it. 3. transpires that he hasn’t done any actual work to make the thing happen, just presumes his job is merely representative and doesnt have to do any work or follow up on what he promises, presumes once he’s said it, other people then enact it.
for example see; cervical scandal, ~or~, literally any moment in his entire political career.
laszy, do-nothing waster.