'This means the world': Longford families' delight as HSE approve Skyclarys drug

Longford families are delighted today after it emerged shortly after 12-midday that the Health Service Executive has approved the reimbursement of the drug Skyclarys for people with Friedreich's ataxia.

The development comes after the drug company Biogen made a significantly improved offer to the HSE.

A HSE spokesperson said Biogen "has moved substantially from its previous position, and the HSE wants to express its appreciation of the flexible and constructive approach shown by the company".

The HSE Senior Management Team met this morning to discuss the matter and they said that following the "very different commercial offering to that which the HSE Drugs Group considered", they decided "on balance" that it would "approve reimbursement for Skyclarys based on the new commercial offering".

Drumlish-based parents Theresa and Frank Kane whose son Ciarán, 15, and Emily, 14 both have FA, were among the 1,200 people who attended a peaceful demonstration in Dublin city centre on Sunday calling for the reimbursement of Skyclarys.

Ciarán, 15 was diagnosed with Friedreich's Ataxia (FA) when he was just nine years old in 2019 and Emily, 14, was diagnosed when she was only eight in 2020.

Theresa said, "It just, this means the world now, the fact that Ciarán is 16 in October and it's just going to slow down the progression of him deteriorating any more like it's just brilliant and Emily hopefully will see what's ahead down the line for her.

"But yeah it's just, for everybody with free ticket to taxi it's just absolutely fantastic news."

Friedreich's ataxia is a rare, inherited, progressive neurodegenerative disorder that causes damage to the nervous system, heart, and pancreas

Theresa said Ciarán's voice was recorded and banked recently and the reimbursement of Skyclarys gives him a chance to hold on to his voice.

"I guess for Ciarán, well at least hopefully it'll slow down his voice deteriorating any more that we won't have to use a computer for him to speak and communicate with us."

There was also a demonstration in North Longford as 200 people walked from St Mary's Church to the Drumlish Community Centre, which Theresa said 'means a lot'.

There are at least 12 people with Friedreich's ataxia in county Longford and 200 across Ireland.

Kiara Lynch, 42, from Aughnagarron, Granard, who was diagnosed when she was just 13 and whose older brother Liam also has the disease, said the news finally gives them a chance.