Severely ill children are being left to suffer without their medication because the Government still has not allowed medical cannabis to be covered under the drug payment, medical card, or long-term illness schemes.
Noreen O’Neill, whose four-year-old son Michael is severely epileptic, said although she can technically be prescribed medicinal cannabis in Ireland, she cannot afford its €1,200 per month price tag and is buying in non-medical grade CBD oil from the UK instead for £400 (€443) per month.
She said families are desperate and sick children are being abandoned by the State because the Medical Cannabis Access Programme, which should have been operating more than a year ago, is still not functioning.
Ms O’Neill spoke about two very young children who are now losing their ability to swallow as her own son was before she discovered CBD oil.
“If the people making decisions in those offices could see those children, it would break them,” she said.
“They’ve lost their swallows, they’re now being fed through a tube, the same way my son lost his swallow, and only regained it when he started CBD and the pharmaceuticals were taken away.
“Having access to this medication is the difference between a child going to their grave or not. No one expected Michael to live and he’s not only alive, he’s thriving. But it’s killing me financially.
“And every family with a sick child is either a single-parent family, like me, or one parent had to stop work to look after their child so they’re on one income.”
Michael, who has drug-resistant epilepsy and suffered up to 20 seizures a day, received his first dose of CBD in January 2018.
“They were talking about end of life, saying his trajectory was very short because once the swallow goes, it’s a very bad sign,” Ms O’Neill said.
“Michael would not be alive if it wasn’t for the CBD. And we have fought tooth and nail and I am to the pin of my collar financially trying to pay for all his other expenses and then trying to meet his cannabis bills.”
Ms O’Neill said medicinal cannabis is actually saving the State thousands of euros every year per patient.
“It’s not even expensive compared to other treatments. Micheal’s tube-feeding cost €12,000 a year. And he hasn’t been admitted to hospital since, he hasn’t taken up a bed.
“Other drugs would cost the same but we never find out how much they cost because they come through the public system. And it’s a very small percentage of people that will be looking for it.”
Solidarity-PBP TD Gino Kenny also called for the Medical Cannabis Access Programme to be implemented urgently.
“I know of families that can’t get it because they can’t afford it,” he said. “Their children are suffering, usually from epilepsy, so they have gone to the black market in desperation, which is not good.
“I know of one family in Cork who are fundraising to pay for their child’s medicine. The way to resolve this is for the Medical Cannabis Access Programme to be implemented and for Government to take action on this.”
A spokesperson for the Department of Health said: “The Medical Cannabis Access Programme register is not currently operational, so currently no patients have accessed the programme.”