A YOUNG boy in need of a revolutionary drug is finally receiving the vital treatment after a yearlong campaign.
The family of nine-year-old Laghey boy Aaron Langan, who has rare genetic Duchenne muscular dystrophy (DMD), said it has given them “hope for the first time”.
Aaron’s loving family began campaigning last June when miracle drug Givinostat was approved by EU health chiefs – but Aaron, who was diagnosed over seven years ago, has only in the past week been given the drug by the HSE.
Givinostat (Duvyzat®) is now approved by the HSE.
Aaron’s dad Dermot had told the Donegal News that his son was undergoing tests to qualify for the treatment and he has now revealed the family’s relief.
He told Highland Radio: “It was tough, knowing that the drug was available, but having to go through a few tests to make sure that he could meet the criteria.
“Thankfully he got the tests in Dublin and is now eligible to get it – and we actually have it here in the house.
“It is a great day. It has taken a while to get here, but thank God, we’re here now.
“We’ve had all the emotions. This is the first time that we’ve got that wee bit of hope since the diagnosis.
“It is not a cure, but the slowdown in the disease is massive. Aaron was diagnosed seven years ago and this is the first time that there has been a treatment.
“It’s great to get it. Aaron is doing okay. He uses his power chair a lot and needs a lot of care.
“We are so grateful now that we have the drug and it will now slow down the drug, hopefully.”
Aaron Langan, form Laghey.
The EMA ruled that Givinostat is a treatment for children who are at least six years old and must have certain mobility.
Some 150 children in Ireland have DMD, including three boys in Donegal – Aaron plus Ballybofey brothers Diarmuid and Nathan O’Sullivan.
DMD is an incurable condition that can lead to scoliosis but also causes muscles, including the heart, to slowly stop working.
Givinostat helps to slow down DMD and was approved by the European Medicines Agency (EMA) over a year ago.
Aaron’s loving mum Sinead explained how Givinostat works and said: “The drug stops the inflammation in the muscles, which keeps mobility for longer.
“We know that Givinostat is not going to make Aaron walk again or reverse what damage has been done. But it can help his upper body.”
Figures have put the cost of Givinostat at between €92,000 and €348,000 per child, depending on the patient’s weight.
A health report the estimated that costs of the drug for the HSE could run to between €26m and €58m over five years.
The HSE said: “From July 1, 2026, Givinostat (Duvyzat®) is approved by the HSE to be added to the list of reimbursable items under the High Tech Drug Arrangements for the treatment of Duchenne muscular dystrophy (DMD) in ambulant [meaning up and walking] patients, aged six years and older, and with concomitant corticosteroid treatment.
“Reimbursement is restricted, and prescribers will be required to apply for reimbursement approval on an individual patient basis as per the HSE Managed Access Protocol.”