Fianna Fáil TD for Cavan-Monaghan, Brendan Smith, has praised the patients and families who have been lobbying the HSE for the approval of the orphan drug Spinraza. It follows the confirmation from the Minister for Health that the drug will be paid for by the HSE.
Deputy Smith commented, “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 from Cavan-Monaghan protesting outside the Dáil I was humbled by their strength and courage and I’m honoured they let me support them on their journey.
“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.
“Today is a day for patients and families to celebrate. I expect, and we should ensure, these life changing drugs are supplied to patients as soon as they possibly can be,” concluded Deputy Smith.