Children are still waiting for drug

By Maurice Garvey

LAST JUNE, 25 child patients in Ireland with debilitating SMA (spinal muscular atrophy) conditions, were told funding had been approved for ‘miracle drug’ Spinraza.

However, four months later the first 11 patients on the list have yet to start treatment.

Glen McHugh Oct 2019 compressor

Glen McHugh Farrelly is still waiting to start his Spinraza treatment, four months after it was approved

One of the patients with Type 2 SMA is Glen McHugh Farrelly (17), who has been unable to continue using his power chair independently.

 “Glen should be three or four doses into his treatment by now, but he has lost his strength to use his power chair,” said Glen’s mother Lisa McHugh.

“The HSE put forward the money, but the hospitals don’t have the staff to administer it. Now we are in a battle with hospitals. We were told it would take 136 days (for beds) for all the 25 patients over a 12-month period (in one hospital).

“I spoke with Tallaght Hospital and they said they are trying to put together a team to administer it safely.

There should be a system set up of three hospitals. Dr O’Rourke (consultant paediatric neurologist) is based in Temple Street and the plan was to involve Crumlin and Tallaght Hospitals as some of the patients live near there, but I wouldn’t mind going to Cork if it was for treatment.”

Lisa said Glen has a personal assistant to help his mobility at Maynooth University, but worries that he may also lose his ability to use his touchscreen and with it, the last of his independence.

The HSE have said Spinraza would cost about €600,000 in the first year to treat each Irish child suffering from SMA and €380,000 a year thereafter.

Spinraza is estimated to cost in excess of €20 million over a five-year period for one patient.

Cllr Francis Timmons (Ind), a Spinraza campaigner, said the delays was “totally unacceptable” and called on Health Minister Simon Harris to intervene.

“I believe from families that the only children getting Spinraza are type ones, who were already getting it before it was approved for the other 25 children in June,” he said.

According to Lisa, the 25 young patients have been to “hell and back” via “hundreds of hours of surgery between them.”

“To be given it on one hand, and then taken away in the other is cruel,” she said.

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