Spinraza refusal leaves patients desperate – Caoimhghín Ó Caoláin TD
The Health Service Executive has announced that it will not sanction approval of the life changing drug Spinraza (Nusinersen) for sufferers of Spinal Muscular Atrophy on the grounds of price.
Sinn Féin Spokesperson on Disability Rights Deputy Caoimhghín Ó Caoláin has strongly criticised this decision and has expressed deep concern for 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.
Teachta Ó Caoláin said;
“I am deeply worried and upset for patients with Spinal Muscular Atrophy and their families who have been dragged through a long bureaucratic nightmare of ‘will it, won’t it’ regarding approval of Spinraza.
“Their hopes have now been dashed after months of relentless campaigning while negotiations between the HSE and Biogen were continuing. A price has now been put on the value of life and wellbeing.
“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 coming weeks’.
“I appeal to all parties to expedite these discussions with the urgency required and get back around the table to reach an agreement.
“It is all the more galling that the decision not to approve Spinraza is in some way influenced by the cost overrun at the National Children’s Hospital. It is a disturbing likelihood, and, if the case, it is directly linked to Fine Gael’s financial incompetence in Government.
“I will continue to play my part in support of all sufferers with SMA and will help step up pressure on Fine Gael to bring this matter to a positive conclusion and at the earliest possible”