A few months ago, I interviewed Aoife Quinn from Oranmore for the Galway Advertiser's April 16 issue. Aoife chatted with me about her experience with Friedrich's Ataxia (FA ), and how there is a treatment available, called Skyclarys, which could help slow down the progression of the disease and improve the quality of life for people with FA.
FA is a rare, progressive neuromuscular condition that causes nerve damage, muscle weakness and mobility loss. It is believed that there are around 200 people with this condition in Ireland.
Skyclarys, the only approved treatment for FA, has been available in many EU countries since 2024, but not in Ireland, even though there are 200 people here who could benefit from this treatment. Many of those people have been running campaigns over the past few months, hoping that it will help those who decide whether or not the HSE pays for medications see that this drug would improve their lives significantly.
Back in July, the HSE Drug Group held a meeting about approving certain drugs, including Skyclarys, and at that point the group decided to delay making a decision, insisting that they needed a further four to six weeks to have more professionals investigate Skyclarys. Last week the HSE Drug Group recommended that the HSE should not reimburse the Skyclarys treatment due to the cost of the drug - €280,000 per patient per year.
The HSE Senior Leadership Team is due to make a final decision on the reimbursement of Skyclarys on August 25.
After last week's decision, I spoke with Eric FitzGerald (30 ), a writer from Galway who was diagnosed with FA when he was 11, about how he felt about the HSE Drug Group deciding not to recommend reimbursing Skyclarys.
"I am feeling absolutely devastated that the HSE Drugs Group recommended not to reimburse Skyclarys, after the clinical experts in the NCPE made such a positive assessment as to why it should be reimbursed," he told me. "It felt like being stabbed through the heart. The atmosphere in the FA community at the moment is very tense. Our hopes have been soaring above the clouds one day, then plummeted down to the depths of despair the next. But we’re never going to stop fighting. Skyclarys is the only treatment approved for Friedreich’s Ataxia. We need it. It’s not something we want to just try. We need it, for any chance of a life we might have."
The Ataxia Foundation Ireland is holding a protest in Dublin this Sunday, August 23 calling for access to the Skyclarys drug. The protest will start at 12 noon at the Garden of Remembrance before going to Custom House Quay.
"The protest feels like our last hope to express how important getting Skyclarys is for us," said Eric FitzGerald, who will speak at the demonstration. "We are people. We deserve the chance to live."
Campaigners remain hopeful that the drug will be approved.
