Monaghan woman "devastated" by rejection of life-enhancing drug

HSE Drug Group did not endorse Skyclarys treatment

A Monaghan student living with Friedreich's Ataxia feels "abandoned" by the HSE as they refused to fund a drug she believes is critical to her future quality of life.

Aoife Gavan (21) made her comments in response to the HSE Drug Group's recent recommendation to not reimburse payments for the drug Skyclarys. The Castleshane woman described the decision "as a major blow to patients and families who have campaigned for years".

Aoife believes: "The decision was driven by cost rather than science," arguing that research shows Skyclarys can slow the progression of the disease and improve patients' quality of life, even if it is not a cure.

Speaking after the recommendation, which happened on August 11, she said "patients feel abandoned by the Government and frustrated by a process that has dragged on for more than three years."

"The next step for me is loss of independence," she said, explaining that her condition has progressed significantly during the campaign and that she is now preparing to use a wheelchair.

Aoife said she had considered exploring treatment options abroad but believes there is little practical support available for Irish patients to access the drug in other countries.

She and other campaigners are now planning a major protest in Dublin on August 25, when the matter will be considered by the HSE Leadership Team.

"I really wish they'd take it seriously," she said. "Time is everything for us."