'We can start our future': Carlow's mother's joy as HSE approves Friedrich's Atexia drug reimbusement
Skyclarys has been approved for reimbursement by the HSE, a Carlow mother has expressed her utmost joy
A mother from Carlow has expressed her sheer joy at the announcement that the HSE will begin reimbursing the Skyclarys drug, which is used to help those with Friedrich’s Ataxia.
Elaine Pollard is one of a number of people from the region who were part of the movement fighting for the drug to be reimbursed.
Her son, Oisín, was diagnosed with the disease at the age of nine, and he is now 26.
Speaking on the KCLR Daily, Elaine told Brian Redmond that she and her family can “start building a future as a family.”
“My emotions are all over the place. I’m just so ecstatic and so delighted for Oisín and all of his friends in the FA community,” she said.
“We can catch our breath for a little while and try and live our lives,” she added.
Elaine said the journey to today’s announcement has been “tough,” but that those affected by the disease can finally have some hope.
“It’s lifechanging for all of them with Friedrich’s Atexia... It shouldn’t have been such an uphill battle,” she said.
Elaine applauded Kilkenny woman, Emily Felix, who has been at the forefront of the fight for Skyclarys to be reimbursed.
She added that the community has been a “courageous bunch” and that there will be “great celebrations” in her house this evening.
Minister for Health Jennifer Murnane O’Connor also spoke on the show, and said she is “absolutely delighted” for those that live with the disease.
She congratulated those that took part in the fight too.
The news was announced earlier today, with the HSE releasing a statement.
The Health Service commended the company behind the drug, BioGen, which allegedly helped in making its decision by being flexible and moving “substantially from its previous position,” according to the HSE.
BioGen appears to have “significantly reduced” the price that it has been charging the HSE for Skyclarys.