Ireland is among the minority in failing to provide Spinraza to SMA patients.
John Curran T.D. once again raised the ongoing failure to make Spinraza available to those who desperately need it in Dáil Éireann recently and said, “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.
“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 strengthening. These children grow weaker month by month and yet they and their families know that a drug is out there that can help. “The HSE have informed me that on February 21st, they wrote to Biogen to detail the refusal to reimburse Spinraza at the current price offering. The company were given 28 days from February 21st to respond or make representations to the HSE’s decision.
“That 28 day timeframe is now a week out and the HSE have been firm in their response to me by specifying; *“Responsibility for progressing this issue is now firmly with the company.” “We must hold out hope until then that the company will use this opportunity to come back to the HSE and that this can result in a positive outcome for the lives of these children. “This is a drug that is making an enormous difference to children suffering SMA in more than 20 other European countries – this fact exposes a major problem in our system here in Ireland that we cannot provide for the same. “These children cannot be denied this drug indefinitely. Their parents are relentless in their fight to secure this medicine. They very recently protested outside the Dáil and have presented a petition containing over 100,000 signatures to Minister Harris. He concluded, “As this 28 days’ time frame draws closer, I along with so many others in our party are urging the Minister to ensure that both he and the HSE are acutely aware of the importance of authorising the provision of Spinraza.”
