Fianna Fáil TD for Dublin Mid-West, John Curran has said that the Government cannot continue to hide behind bureaucracy and procedure by failing to make Spinraza available to those who need it.
The Deputy recently raised the matter in Dáil Éireann and said, “There are some 25 children living in Ireland with a degenerative neuromuscular condition, Spinal Muscular Atrophy, and two of these young people live here locally.
“These children are very young and have already endured so much – often facing long hospital stays for weeks and months at a time and extensive physiotherapy is a part of daily routine.
“As debilitating as this condition is, it is not without hope. Spinraza is a drug that is making an enormous difference to the children suffering SMA and their families in more than 20 countries across Europe.
“It is clinically effective and has been proven to work by slowing down the muscle wastage and in many cases allowing muscle strengthening. Regrettably, this life changing drug is not available under the State’s Drugs Payment Scheme.
“This is despite the fact that on June 22nd the Minister for Health announced that Ireland would join the Beneluxa initiative; an alliance aimed at securing affordable and timely access to medicinal products in a range of countries.
“The very first task undertaken by this new group was to make Spinraza available in each of the countries signed up to the initiative, except Ireland. The hopes of the 25 children in Ireland dealing with a gruelling condition were dashed by this Government’s inability to make provision for a drug that can transform their quality of life.
“The earliest possible intervention is crucial but I am concerned that the period of consultation paving way for the provision of this drug is taking inexplicably long.
Deputy Curran concluded, “It’s imperative that the Government fast track the authorisation of Spinraza as part of the Drugs Payment Scheme.”