Fianna Fáil Spokesperson on Health, Stephen Donnelly has said that the HSE’s decision to pay for the orphan drug Spinraza, is a testament to the determination of patients and their families.

He explained, “This has been a long-fought battle by those suffering from the rare muscle-wasting disease, spinal muscular atrophy (SMA) who rightly wanted the health service here to follow the example of almost every other European country and supply Spinraza. When I joined families protesting outside the Dáil I was humbled by their strength and courage and I’m honoured they let me support them on their journey.

“I understand that it was a major decision for the Health Minister to sanction the level of funds needed to pay for Spinraza, but who among us could watch our loved one’s suffering, knowing there is a treatment available and not do everything we can to help?

“We know that treatments are becoming more advanced and that there are now some incredibly expensive ones on the market. But this is the reality of modern medicine and we need to come up with a plan to deal with it.

“Specifically, we need projections for the kind of money that Ireland will have to spend in five- or ten-years’ time, we can work to these projections and ensure that Irish citizens have access to the very latest breakthrough therapies. It’s no less than Irish patients deserve”, he concluded.