Fianna Fáil TD for Cavan-Monaghan Brendan Smith has said it is disappointing that the HSE has decided not to include Spinraza on the drugs reimbursement scheme.
Deputy Smith commented “It is extremely disappointing to be informed by the Minister for Health that the HSE have ruled against Spinraza. This medicine has the potential to change lives of those who use it. Yet the HSE say clinical effectiveness is still quite limited and that the current price proposed by the manufacturer was not a cost-effective use of resources.
“There is significant evidence from countries across the world, and from clinical trials, that Spinraza is changing children’s lives significantly, slowing down muscle wastage and, in many cases, allowing muscle strengthening to occur which allows them to live a much more active, healthy life.
“It is heart-breaking for the families to know that there is a drug available, which could greatly improve their child’s life, but that due to its cost they cannot access it. I would urge the Minister and his Department to consider this drug for the sake of the families.There should be no further delay in approving this medication.,” concluded Deputy Brendan Smith.