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Lack of information and delays add to pain of those waiting on Spinraza – Senator Conway-Walsh

27 March, 2019 - by Rose Conway-Walsh


Sinn Féin Senator Rose Conway-Walsh has said that a recent report showing lack of access to new medicines in Ireland, should be a wake-up call to the Government to provide funding for vital drugs such as Spinraza.

Senator Conway-Walsh was responding to a report by IQVIA which highlighted Ireland’s poor position in relation to other European countries for patients trying to access new drugs.

The Mayo-based Senator said:
"Spinraza has proven effects in improving quality of life and in extending life. That is why it has been approved in all but 3 EU member states, including Ireland.

"Reports such as this only add to the distress of those living with conditions such as spinal muscular atrophy.

"The important trend to highlight in this study is that we are behind other EU countries in terms of negotiating price and making drugs available.

"While all accept that this process cannot happen overnight, there is an agonisingly long wait for Irish patients compared to others in the EU.

"While the process of approval is underway, there is no communication from the HSE with patients and their families.

"Other member states keep families informed and notify them of the timing of the decision, and the reasoning behind it. This should be standard practice in Ireland.

"The decision in February not to include Spinraza came as a huge shock to many families, who had been campaigning and hoping for months that a many questions around price negotiation and the attitude of pharmaceutical companies remain.

"They will take considerable time to fully resolve and to have a better policy for accessing new drugs. Children suffering from spinal muscular atrophy do not have that time.

"I again call on the Minister for Health to approve Spinraza."

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