Families of children with muscular dystrophy bring their fight for Translarna approval to Leinster House

Senator Rose Conway-Walsh with families of children with muscular dystrophy at Leinster House

Senator Rose Conway-Walsh with families of children with muscular dystrophy at Leinster House

Sinn Féin Mayo senator Rose Conway-Walsh has stressed the importance of an all-Ireland approach to securing patients’ access to a life changing drug treatment. Speaking after a briefing in Leinster House at which families of Duchenne muscular dystrophy sufferers spoke of their ongoing efforts to secure access to the drug Translarna, Sen Conway-Walsh said: "As legislators, across all political persuasions we have a responsibility to join the fight of these families for access to treatment which will, as it has done in the North and 22 other countries, significantly delay the loss of walking and associated respiratory difficulties."

Ann Marie Harte-Walsh, mother of five-year-old Lewis from Castlebar, spoke about her desperation to prevent Lewis from suffering the complications caused by being confined to a wheelchair as a very young child. “The only way this can happen is if we have access to Translarna. Time is not on our side. Lewis is medically eligible for this treatment now.”

Thanking the families and Muscular Dystrophy Ireland, Senator Conway-Walsh concluded: “We are not talking about huge amounts of money. Right now there are only two children who are eligible for Translarna with a further three who will need it in the next few years. It is imperative that in cases such as this that we have an all-Ireland approach to access to life changing and lifesaving medicines. It is illogical and unfair to have different levels of access for sufferers in different parts of the island. Today we heard from a family of a sufferer who would have fully paid access to Translarna if they lived 10 miles away.”

"These children cannot wait for lengthy legal processes that are likely to cost much more that the treatment would cost in the first place. Many of the sufferers have waited three years since the drug was first approved by the European Medical Agency. Time lost for these children can never be gained back and will have a detrimental effect on the rest of their lives. Their needs and rights are greater than any process. I am urging the Government to make the right decision and the humane decision to approve Translarna without any further delays.”


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