'Don't let these kids die' - Protesters take drug fight to the Dail

Health Minister Simon Harris has been told his decision on whether to grant access to a revolutionary new drug for children with a rare degenerative condition is one of life or death.

Families, friends, supporters and sufferers of spinal muscular atrophy (SMA) gathered outside the Dail yesterday to call for access to the drug Spinraza.

The only drug ever manufactured to treat SMA, a degenerative neuromuscular disorder, it is licensed, available and changing lives across the globe.

However, it has yet to be approved for general reimbursement in Ireland.

Campaigners were told yesterday that a decision would be made next Friday on whether the expensive drug - each dose costs more than €100,000 - will be reimbursed in Ireland.

"If the HSE and minister fail to give this drug, you have to understand they are standing back and letting all our SMA sufferers in Ireland die," said Lorraine O'Malley, whose daughter Grace (9) has the condition.

Sam Bailey (8), from Rathcoole, who has type two SMA, was among the protesters yesterday with his mother Fiona, father Paul and sisters Kayla (6) and Sarah (2).

Ms Bailey said that when Sam was first diagnosed with the condition there was no hope, but Spinraza, which is already in use in the Netherlands, Belgium and Luxembourg, had given them hope.

"He was diagnosed at 13 months, but there is hope now. There was hope on December 23, 2016, when Spinraza was approved by the US FDA," she told the Herald.

"He's gone through so much, but with every infection he gets weaker and weaker. We can't wait a moment longer; we can't wait until winter.

"We go into Crumlin Hospital and we don't know if Sam is coming home."

Rare

Lauren Whelan (15), who has type three SMA, was supported by scores of her friends from Loreto, Crumlin.

Lauren's mother, Lisa Quinn, said she had to get the treatment. "It's a very rare condition, only 25 kids have it and yes, the treatment is expensive.

"But we are appealing here now. She has to get this medicine. It has been tried and tested.

"We know it works, it will make her life better. It could make her walk again."

Jonathan O'Grady, from Dundrum, who has type two SMA, said TDs appeared receptive to the campaigners when they met yesterday.

"They said there is going to be a meeting of the committee on rare diseases next Tuesday so let's see what comes of that," he said.

Former Mayo Ladies GAA manager Frank Browne, who lost his daughter Emma to SMA in 2004, also attended the meeting and said his family were campaigning to get children what they deserve.

"No matter what the minister decides it won't bring Emma back to us. But we are here and we want to give these children the chance of life," he said.

Scientific

A statement from the Department of Health said: "The HSE has statutory responsibility for medicine pricing and reimbursement decisions.

"HSE decisions on which medicines are reimbursed by the taxpayer are made on objective, scientific and economic grounds, on the advice of the National Centre for Pharmacoeconomics (NCPE).

"The NCPE conducts health technology assessments for the HSE, and makes recommendations on reimbursement to assist HSE decisions."

Last night the HSE said no decision had yet been made on the application for the reimbursement of Spinraza.

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