‘These children cannot be denied drug indefinitely’

by Padraig Conlon

Ireland is in the minority for providing a life-saving drug to those who desperately need it.

This is according to Dublin Mid West Fianna Fail TD John Curran who is urging Health Minister Simon Harris to authorise the provision of Spinraza so two local children can have a chance at life.

Both children suffer from the muscle-deteriorating disease, Spinal Muscular Atrophy and are part of a nationwide campaign for the HSE to approve the drug, which is available in 21 other countries throughout Europe.

Speaking last week, Deputy Curran said: “There are 25 children diagnosed with Spinal Muscular Atrophy in Ireland and two of those young people live locally in Clondalkin and Rathcoole.

“Spinraza is clinically effective and has been proven to work by slowing down the muscle wastage and in many cases allowing muscle strengthening.

These children grow weaker month by month and yet they and their families know that a drug is out there that can help.”

Spinraza is an orphan drug, which means it is commercially underdeveloped and very expensive. Only three countries in the EU have refused to approve access to the drug – Ireland, Estonia and the UK.

The reason the HSE have given for not approving Spinraza, which would cost in excess of €20 million over five years, is because they do not deem it to be cost effective.

This decision has understandably caused much anger among parents of Irish children with SMA who have been campaigning for access to the drug for years.

Rathcoole couple Fiona and Paul Bailey, whose son Sam has SMA, started a change.org petition last year, which has almost 100,000 signatures, calling on Minister Simon Harris to make the drug available in Ireland.

Deputy Curran said time is now of the essence: “The HSE have informed me that on February 21st, they wrote to Biogen to detail the refusal to reimburse Spinraza at the current price offering,” he said.

“The company were given 28 days from February 21st to respond or make representations to the HSE’s decision.

“That 28-day timeframe is now a week out and the HSE have been firm in their response to me by specifying; ‘Responsibility for progressing this issue is now firmly with the company’.

“We must hold out hope until then that the company will use this opportunity to come back to the HSE and that this can result in a positive outcome for the lives of these children.

“These children cannot be denied this drug indefinitely. Their parents are relentless in their fight to secure this medicine.

“As this 28 days’ time frame draws closer, I along with so many others in our party are urging the Minister to ensure that both he and the HSE are acutely aware of the importance of authorising the provision of Spinraza.”

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