The parents of a little boy who had life-saving treatment approved are calling on Health Minister Simon Harris to ensure that the HSE delivers on its promise.

In June Spinraza, a drug used in the treatment of spinal muscular atrophy (SMA), was approved for Isaac Brennan from Co Kilkenny and 25 other children.

Four months on, seven-year-old Isaac and the other 25 children are still waiting.

“We are facing into another deadly flu season, without Spinraza, despite being promised it by the HSE,” Isaac’s parents, Carol and Philip, said.

“Isaac has developed scoliosis at the top and bottom of his spine over the past few months, which will get worse as time goes on.

“We had received provisional dates of July, August and October/November for the roll-out of Spinraza and just last week, there appears to be some doubt over the October/November roll-out to date.

“We are calling on Minister Harris to ensure that the HSE delivers on its promise without any delay.”

Isaac uses a wheelchair full-time because of SMA. Spinraza is recognised as having positive effects and increasing life expectancy.

A spokesperson for the HSE said: “Application for approval is based on clearly defined criteria and follow these guidelines.

“The number of individuals treated and their commencement on treatment is as per the clinical guideline.

“All patients that have been recommended clinically for treatment have been approved to date.”

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