Fianna Fáil Leader and TD for Cork South Central Micheál Martin has called on the Health Minister and HSE to make Spinraza available to children with a rare muscle disease – spinal muscular atrophy – without delay.
The HSE leadership management team is due to meet tomorrow and it’s hoped that a final decision on the orphan drug can be made.
Deputy Martin raised the issue once again in the Dáil this week.
“Families across the country have been campaigning for Spinraza to be made available for years. They have made multiple trips to Dáil Éireann to meet with me and other representatives to tell their stories and outline what a change to their lives this drug would make. Many of these stories are truly heartbreaking and it comes as no surprise that so many people have lent their support to the campaign”, said Deputy Martin.
“There are around 25 children with spinal muscular atrophy who would benefit from this medication, many of whom have spent weeks and months in intensive care units, unable to have a proper quality of life. Spinraza could change all that but the HSE and government are dragging their heels. Negotiations have been protracted.
“Approximately 20 European countries have already approved the drug. The delay here is unacceptable. There is significant evidence from countries across the world, and from clinical trials, that Spinraza is changing children’s lives significantly, slowing down muscle wastage and, in many cases, allowing muscle strengthening to occur which allows them to live a much more active, healthy life.
“The delays here have been unacceptable and children and their families have been forces to suffer unnecessarily. Spinraza needs to be approved this week”.