Kilkenny youngster's fight for access to life-saving drug

A crucial meeting over access to a drug for a Kilkenny youngster who lives with a life-limiting condition will take place later this month
Isaac Brennan (6) lives with Spinal Muscular Atrophy. He is confined to a wheelchair and has a life expectancy of just 20. He is forced to use a wheelchair because of SMA. There is medication, Spinraza, which could enable him to walk and extend his life expectancy but it is not funded by the HSE and is currently not available in Ireland.
The manufacturer, Biogen has been in talks with the HSE Drugs Group in relation to the cost of Spinraza and both sides are due to meet over the coming weeks to discuss a revised offer.
His heartbroken parents, Carol and Philip are continuing to campaign for access to the drug which could save their son’s life.
“Isaac goes through intensive physiotherapy and occupational therapy everyday with us to keep his muscles strong and active.
“Access to treatment of this drug would help improve Isaac’s strength and possible ability to walk and potentially increase his life expectancy,” his mother Carol said.
The plight of Isaac and a number of other children who live with the condition has been raised in Dáil Eireann.
Deputy Bobby Aylward has requested that the Taoiseach approach the HSE Drugs Group and simply communicate the message that anxious parents, young families and affected children have been waiting far too long under a cloud of uncertainty for a decision to be reached and this must be considered going forward.
Deputy John McGuinness has also raised the case at national level and has met with Isaac and his parents.
“The Government need show humanity and compassion and immediately provide the drug Spinraza. If the political will is there it can be done. Isaac and his family have suffered enough,” he said.