A REOLUTIONARY drug to help children with a rare genetic condition has been approved by health chiefs – but boys in Donegal still cannot access it.
At least three Donegal boys – Aaron Langan, from Laghey, and Ballybofey brothers Diarmuid and Nathan O’Sullivan – have heartbreaking illness Duchenne muscular dystrophy (DMD).
It is an incurable condition that can lead to scoliosis but also causes muscles, including the heart, to slowly stop working.
Miracle drug Givinostat helps to slow down DMD and was approved by the European Medicines Agency (EMA) last June – but it has only now been approved by the HSE, according to Donegal senator Manus Boyle.
He said: “Givinostat has now been approved by the HSE senior leadership team. This is a significant milestone.
“The application has now moved to the Managed Access Protocol (MAP) stage, which is one of the final steps before access can be made available.”
Aaron Langan, form Laghey, has Duchenne muscular dystrophy.
The Donegal News has contacted the HSE about access to Givinostat, which is sold under the brand name Duvyzat, for children like Aaron.
Families of the boys learned last year that Givinostat had been approved in Europe but were told that it was not being rolled out in Ireland amid a cost-benefit analysis review.
Aaron’s dad Dermot recently told the Donegal News: “We’ve heard nothing about what’s happening between the HSE and the drug’s manufacturer.
“We were told the HSE was given a price on May 8. We are still waiting. What is the delay?”