Relief for Monaghan woman as HSE approves reimbursement of Skyclarys drug

A Monaghan woman has spoken of her relief after the HSE approved reimbursement of Skyclarys, the first licensed treatment available for people living with Friedreich's Ataxia.

The 21-year-old became emotional when she learned the decision had been approved by the HSE's Senior Management Team shortly after midday.

"I've got tears all over my face, I'm just so relieved," she said.

The young campaigner, who has been among those advocating for access to the drug, said she was delighted for the entire Friedreich's Ataxia community after months of uncertainty.

"I feel so happy for everyone in the community. We've put the hard work in. No one should have had to fight that much for access to basic medication."

The HSE said the decision followed a substantially improved financial offer from manufacturer Biogen, which emerged after intensive discussions in recent days.

While the details of the revised offer have not been disclosed, the Monaghan woman said she believes it was a key factor in securing a positive outcome.

"I saw this morning that there was a new offer from Biogen and I started hoping, but I didn't want to get my hopes up because we've been disappointed before."

Having spent months speaking publicly about the issue, she admitted she is looking forward to returning to normal life.

"I'm such a private person and I love my privacy. This was completely outside my comfort zone. But now I can focus on college and other parts of my life without having to worry about this."

The HSE said it will continue working with Biogen to finalise the administrative arrangements needed before patients can begin receiving the treatment.

For families affected by Friedreich's Ataxia, however, today's announcement marks a major breakthrough.

For more see tomorrow's print edition of The Anglo-Celt.