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 Dáil yesterday calling for access to the drug Spinraza.
They were told a decision would be made next Friday on whether the expensive drug 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.
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.
"We know it works, it will make her life better, it could make her walk again," she said.
Last night, the HSE said no decision had been made as yet on the application for the reimbursement of Spinraza.
It said this was because a statutory assessment process was still ongoing.