Dublin Mid-West T.D. John Curran has said that he is shocked that after 4 months the HSE Approved Drug Spinraza for children suffering from Spinal Muscular Atrophy (SMA) has not treated one of the children who so badly need it.
Speaking in the Dáil recently Deputy Curran has called on the Minister for Health to urgently look into what is causing this delay, he said; “It is disappointing that after months of campaigning and the successful approval by the HSE of the drug Spinraza in June of this year that not one child approved for this drug has received treatment 4 months on.” I campaigned for months to raise the ongoing failure of this Government to make Spinraza available to those who desperately need it in the Dáil and was truly delighted when the HSE finally approved the drug.
This drug is a first in the treatment for SMA and the relief and happiness that came for the wonderful families who campaigned endlessly cannot be overestimated when it was approved 4 months ago by the HSE. The current delay and wait for the children who need this treatment is unacceptable.
Last week I called on the Minister for Health to look into this matter urgently. I subsequently received a HSE reply on the matter. This reply was most unsatisfactory, claiming that ‘All patients that have been recommended clinically for treatment have been approved to date’ – Approval is one thing, treatment is another.” “Not one child out of the 25 children who have SMA have received treatment. I have now called on the Minister for Health to urgently see that treatment commences immediately. “Spinal Muscular Atrophy is a very serious degenerative neuromuscular condition that affects virtually every aspect of a person’s life. There are 25 children diagnosed in Ireland and two of those young people live locally in Clondalkin and Rathcoole.
“Their parents and families have been relentless in their fight to secure this medicine, organising protests outside Leinster House and a petition with over 100,000 signatures to Minister Harris.
“As debilitating as the daily routine, long hospital stays and extensive physiotherapy are there is a drug that can make transform their quality of life. Spinraza is clinically effective and has been proven to work by slowing down the muscle wastage and in many cases allowing muscle. He concluded; “It is a shame that it has taken so long to have Spinraza authorised and this delay has exposed our system of approving drugs and I have called for a review of our system seeing that we can be the only country in Europe delaying authorising drugs for this length of time.