Minister Simon Harris saying that the issue with Spinraza availability does not only lie with Government. Claiming that drug companies must come to the table with reasonable positions also. He also claims Irish citizens ought to be putting as much pressure on Biogen as the government.
To date Spinraza is available in 19 other EU countries including the Benelux-A group that Ireland participates in for negotiation of drug pricing.
The cost of Spinraza was a large part of the discussion on Thursday at the #SpinrazaNOW event at Leinster House. However it emerged early on Friday morning that the price currently offered to Ireland and the HSE may be the lowest of any EU country, up to 60% lower than figures discussed by campaigners and in the media previously and that this offer had not, at that time, yet been acknowledged by the HSE.
SMA Ireland has written to the Minister asking him to clarify the exact position, as the above, if true, is deeply concerning.