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All-Ireland equality of treatment needed for children with muscular dystrophy – Conway-Walsh

18 August, 2017 - by Rose Conway-Walsh

Speaking this afternoon, Sinn Féin Senator Rose Conway-Walsh has said that it is disgraceful that some families have to consider moving north in order to access a vital drug to treat muscular dystrophy for their children.

Senator Conway-Walsh was speaking after she met the family of Lewis Harte Walsh at the weekend along with Sinn Féin leaders Gerry Adams TD and Michelle O’Neill MLA

She said:

“Translarna is a drug for their children who suffer from Duchenne muscular dystrophy. The drug is available in the north of Ireland as well as in 22 European countries. 

“The case of 5 year old Lewis Harte Walsh, a sufferer of Duchenne Muscular Dystrophy, highlights the human impact of a failure to approach this on an all-island basis. My colleague Michelle O’Neill, during her time as Health Minister in the Executive, ensured that sufferers of muscular dystrophy in the north had access to Translarna.

“Indeed, for over two years now many families of children with Duchenne’s have exhausted themselves campaigning for this drug to be approved. However, recently the HSE informed families of children who suffer from Duchenne muscular dystrophy that Translarna will not be approved for reimbursement under its drugs schemes.

“The situation is now incredibly difficult for the parents of these children who have been forced into making the choice of staying in their homes without access to the drug, or of uprooting to a different jurisdiction where the drug is available.

“I know myself that some of the families affected are looking at making preparations to move to live in the north of Ireland in order to be eligible to receive the drug for their children.

“No parent should be forced to make this decision, it is patently clear that this should not have to happen. If 22 European countries can make the drug available, then it behoves the Irish Government to do all they can to ensure that it is available in this state as well.

“However, it is also incumbent on pharmaceutical companies to ensure that the drug is priced acceptably. For too long now, across the globe, some large pharmaceutical companies have used difficulties presented by people’s illnesses as leverage to charge astronomical prices for life-saving and life-changing medicines. Not only is it immoral, but it is also a damning indictment of how the commodification of health care has meant that care has become more about money than about helping the most vulnerable.  

“Both the HSE and pharmaceutical companies need to put the patient at the centre of the decision making procedure and immediately review the process to make Translarna available in this state.

“Children like Lewis are dependent on this drug being made available within months to prevent them being wheelchair bound for the rest of their lives. It's crucial that the right decision is made now.” 

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