Family and friends cry out for Govt to release funding for the life-changing drug Spinraza

By Mary Dennehy

THE family and friends of a nine-year-old boy with a degenerative muscle disease has called on the Government to “give a damn for Sam” - and to release funding for SMA drug, Spinraza.

Living in Rathcoole, Sam Bailey has Type 2 Spinal Muscular Atrophy (SMA), a degenerative disease that causes progressive muscle weakness and loss of movement.

Sam Baily 3 1

Pupils from Scoil Chronáin in Rathcoole gathered in a show of support for their pal, Sam

For the past two years Sam and his family have been campaigning for the Government to release funding for Spinraza – the first approved treatment for SMA sufferers.

Last week, campaigners were expecting an announcement from Government on Spinraza, but families have been left waiting.

In response, a show of support was this week held by Sam’s school friends in Scoil Chronain, Rathcoole, where the nine-year-old is in second class.

Speaking with The Echo, Sam’s mother Fiona said: “We have been campaigning for almost two years and were promised a decision again last week.

“We are presuming it will be a ‘yes’ as every country [in the EU] has approved it except Ireland and Estonia.

Sam Bailey 1 1

Sam Bailey

“It’s a national disgrace, in my mind, that it has not been approved.”

She added: “Spinraza at the moment is Sam’s lifeline, it’s not a cure, but it’s his lifeline.

“Spinraza will totally change his quality of life . . . and will stop further degeneration and help to rebuild some of the muscle function lost.

Sam Bailey 2 1

Sam with his dad Paul, mother Fiona, and sisters Kayla and Sarah

“It’s heartbreaking to see the deterioration month on month.

“He can’t even lift his arms up to give his little sisters a hug.

“Spinraza will help to make him strong and he will be able to do a lot more . . . and do a lot more with ease.

“It will help him to do things that we take for granted, like turning the page of a book.”

Sam, who made his Communion recently and is a big fan of football and X Box, does not have the same rights as other children living across Europe, according to Fiona.

“If Sam lived anywhere else in Europe he would be getting stronger, it’s heartbreaking to watch,” Fiona said.

“We are asking the Government to make Sam an equal citizen [as we vote in the European elections]". 

In a show of support before the European Elections, Sam’s school staged an event on Wednesday, May 22 – which included a message to Simon Harris, through a poem penned by his dad Paul.

Sam and his mam Fiona, dad Paul and younger sisters Kayla and Sarah, wished to thank the Scoil Chronáin community for its support, especially all of the pupils, Sam’s teacher and SNA and parent Sorcha McCabe.

“All of the kids were absolutely fantastic, such energy and love and kindness,” Fiona said.

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When contacted by The Echo, a spokesperson for the HSE said that an application for Spinraza is currently undergoing assessment by the HSE.

The spokesperson added that the assessment focus is centred on “reviewing the evidence of the clinical effectiveness” of Spinraza and on the “cost effectiveness of the product in view of the prices being charged for the drug”.

According to the HSE, the drug has an “estimated budget impact in excess of €20m” over a five-year period.

The spokesperson confirmed that the HSE issued a notice of decision to the pharmaceutical company in relation to Spinraza on February 21 of this year.

“This allows the company to make final submissions and representations – which it has now done.” the spokesperson said.

“The representations are being considered carefully by the HSE and an announcement regarding the outcome of the application is expected shortly”.

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