Mayo TD says HSE Skyclarys recommendation a devastating blow for families

Sinn Féin TD for Mayo, Rose Conway-Walsh, has described yesterday’s recommendation by the HSE drug group not to fund the reimbursement of Skyclarys for the treatment of Friedreich’s Ataxia as a devastating blow for patients and their families.

Teachta Conway-Walsh said: “This is a huge disappointment for people living with Friedreich’s Ataxia and their families. They have been waiting years for access to a treatment that can slow the progression of this cruel disease.

“I have met families from Mayo who have fought a long and determined campaign to get Skyclarys approved for reimbursement, including recently when they came to Leinster House. They have had to watch their loved ones’ condition progress while knowing that a treatment is available and already accessible to patients in many other EU countries. The final decision has not yet been made, so there is still time to find a way forward. I am appealing directly to the Minister for Health, the Tánaiste and the Taoiseach to listen to these families and do the right thing.

“The pharmaceutical company that manufactures this drug must also recognise its responsibility and work to bring the price down. There needs to be urgent engagement from all sides to reach an agreement.

“People with Friedreich’s Ataxia and their families have already waited far too long. “They cannot afford more years of delay.”