Longford woman battling rare disease 'quietly optimistic' on 'life changing' drug
Kiara Lynch and her brother Liam are two of the 200 people with Friedreich's ataxia (FA) in the country and the group are urging the Government to fund 'game-changer' treatment, which costs approximately €280,000 per person.
A North Longford woman with a rare, neuromuscular disease, who is campaigning for access to life-changing treatment for her and 200 patients, has said despite a very long wait she is 'quietly optimistic' of a positive breakthrough.
Kiara Lynch was diagnosed with Friedreich's ataxia (FA) at the age of 13 and for more than 28 years she has been battling what she describes as 'the relentless progression' affecting all of her abilities.
The effects of FA are having a significant adverse impact on her body and Kiara said she has 'cardiac issues, lung issues, bladder issues, pressure sores, and constant pain in my neck and back'.
Kiara (42) previously described how there was a very welcome and much-needed glimmer of hope with this new drug treatment Skyclarys, the first treatment in the world for FA was approved.
Skyclarys or omaveloxolone was first given the green light for use in the US in 2023 and Europe followed less than 12-months later.
However, the 'game-changer' treatment, which costs approximately €280,000 per person, is at the centre of protracted price negotiations between the HSE and the marketing authorisation holder, Biogen (Idec) Ireland Limited.
Kiara and the other 200 FA patients said Skyclarys is unaffordable to them and they have appealed to the Government to fund it.
The group attended a HSE drugs group meeting on July 14 who then decided they needed more information and referred the matter onto the Rare Disease Technical Review Committee (RDTRC) on July 21.
Kiara said they gave a 'positive recommendation' for the reimbursement of Skyclarys but they still had 'two more meetings to get through' on Tuesday August 11 and another with the HSE senior management team on August 25.
Speaking on Monday, prior to the meeting, Kiara added, "Everyone is feeling both physically and mentally exhausted, in extremely nervous and very disappointed that it has taken this long to get this far, as during all this time waiting to get through bureaucracy people with Friedreich's Ataxia have kept on deteriorating losing abilities they can never get back."
"I am quietly optimistic that something will happen on Tuesday."
*For the full story see this week’s Longford Leader newspaper