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Government must seize opportunity arising from Legal Settlement to secure Translarna access – Conway-Walsh

12 July, 2018 - by Rose Conway-Walsh


Sinn Féin Senator Rose Conway-Walsh has said that the ending of legal proceedings between the HSE and the drugs company PTC offers a real chance to provide sufferers of Duchenne muscular dystrophy with the Translarna drug without delay.

Senator Conway-Walsh was speaking in the Seanad where a commencement debate asked the Minister for Health Simon Harris what plans were in place to provide the treatment given the changed circumstances, saying:

“I welcome the fact that the legal action has been discontinued. We now have a window to process a fresh application to have Translarna covered by the HSE. What is vital is that any new application should take account of evidence and submissions already made in similar applications. The last application took 2-3 years. Any fresh application be processed without delays.

“The HSE needs to negotiate the price of Translarna with PTC. I cannot understand how any meaningful cost benefit analysis could have been carried out when the HSE did not seek to negotiate the price in the first place.

“I am now requesting that Minister Harris gets directly involved in instructing the HSE to outline the clear pathway and timeline in processing the application once it is received from PTC.  

“The five children with Duchenne Muscular Dystrophy who are eligible for Translarna to effectively treat their condition cannot afford to wait any longer.  Every day that goes by brings them one step to losing their mobility.  I hope that we will see a positive outcome this time round for these children and their families.” 

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