Mayo parent to address Oireachtas briefing on Translarna issue

MAYO Senator Rose Conway-Walsh is facilitating a cross party briefing on the availability of the Translarna drug to sufferers of muscular dystrophy in the State.

The briefing takes place tomorrow at 4 pm in the AV Room of Leinster House. There will be a press opportunity at 5 p.m., immediately following the briefing.

Among the speakers will be Anne Marie Harte Walsh, Castlebar. Anne Marie is the mother of Lewis Harte Walsh, a five-year-old boy with duchenne muscular dystrophy.

Lewis is eligible for the medication Translarna for almost a year, but has not been able to access this treatment as the HSE have refused to reimburse for it. Translarna is available in 22 other European Countries.

Leading experts as well as families of sufferers will also address the briefing as part of their campaign to secure HSE funded access to the drug.

Speaking ahead of the briefing the Mayo senator said: “Tomorrow’s briefing is primarily an opportunity for politicians from all parties to hear first-hand the experience of sufferers and their families during their campaign to obtain access to Translarna.

"I am also hopeful that some new avenues can be explored in order to achieve this. In August my party leader Gerry Adams TD and Michelle O’Neill met with the family of Lewis Harte-Walshe who suffers from muscular dystrophy and heard first-hand how time is of the essence in the approval of Translarna.

"Translarna has proved life-changing to sufferers and can extend the period in which they have full use of their legs.

"It is unfair to sufferers and their families, all of whom are fully aware of the potential benefits of the drug, to deny them access to a fully funded course of treatment. This unfairness is compounded by the fact that access to the drug is available in other parts.

"We have a situation where access to Translarna is fully funded in one part of the island and not in the other. This presents parents with a stressful decision as to whether to move to another jurisdiction in order to access the drug.

"This is why an all-island approach to drug treatment and negotiation, along with our EU partners is essential. Translarna is available in 22 other EU countries.

"My party colleague Louise O’Reilly revealed at the weekend how over €3 million has been spent thus far by the OPW renting an office block that is lying idle, yet families such as those in attendance at tomorrow’s briefing are told that the money simply isn’t there.

"The cost of medicines and the conduct of large pharmaceutical companies has also become a serious cause for concern recently. Therefore, it is of the utmost importance that patient considerations are put front and centre by pharmaceutical companies when it comes to pricing drugs.

"I encourage as many of my Oireachtas colleagues as possible to attend the briefing and hope that this will start the process of a more patient centred, all-island approach to securing drug treatment funding."

*Pictured recently in Ballina were Senator Rose Conway-Walsh, Padraig Walsh, Lewis Walsh, Gerry Adams TD, Ann Marie Walsh and Michelle O'Neill, leader of Sinn Féin. Lewis is suffering from duchenne muscular dystrophy for which there is no cure and is awaiting approval of the drug treatment, Translarna.

Photo: John O'Grady Photography.