The NHS in the UK just reached a deal with the pharmaceutical company, Biogen, to provide Spinraza, the drug treatment for those suffering with Spinal Muscular Atrophy. A definitive onus is now on our Government to act decisively and quickly to ensure that Irish children can also access this life saving treatment.
Estonia and Ireland are the only EU countries that do not provide the treatment.
It is reported that the price was lowered compared to previous cases, including the offer that was made to the HSE. It is vital that this is taken into consideration as the HSE considers its next move in negotiations with the company
A very important part of today’s Spinraza announcement is the reference to ‘real-world evidence of its’ long term benefits’.
Our Government is exhibiting a ‘real lack of humanity’ by not approving Spinraza here while Irish childrens’ bodies continue to deteriorate. The HSE Leadership Team was due to make a decision this week, but this did not happen. There are no excuses for further delays.
