Dublin South West TD, Seán Crowe, has said he is deeply concerned that the Health Service Executive has decided that it will not sanction approval of the life changing drug Spinraza (Nusinersen) for sufferers of Spinal Muscular Atrophy on the grounds of its high cost.

The Sinn Féin TD strongly criticised the decision and expressed his deep concern at the impact this decision will have on the affected children, adults and their families from both a medical and a social wellbeing point of view.

Deputy Seán Crowe said;

“I am deeply concerned at this decision and empathise fully with all those patients who have Spinal Muscular Atrophy who have been dragged through a long bureaucratic nightmare of ‘will they or, won’t they’ surrounding the financial approval for this life changing drug, Spinraza.

“Their hopes have now been dashed after months of relentless campaigning while negotiations between the HSE and Biogen, the company with the patent rights, were continuing. Unfortunately a price has now been put on the value of life and wellbeing, and those with Spinal Muscular Atrophy are deemed to be not cost effective.

“This decision is morally wrong and has again trapped very ill patients in the middle of a bidding war between Government and the pharmaceutical industry.

“The HSE has said that it is likely that there will be further discussions about funding the drug in the weeks to come.

“I am appealing to all parties to expedite these discussions with the urgency required and get back around the table to reach an agreement where these children can access this life changing drug.

“It must be all the more galling for families that the decision not to approve Spinraza is in some way influenced by the cost overrun at the National Children’s Hospital.”