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Seanad
‹ An tOrd Gnó - Order of Business

Spinraza rollout delay

Summary

Senator Ardagh raised delays in providing Spinraza to children with spinal muscular dystrophy, saying only a few of the eligible children had begun treatment and that families were being let down.

I want to raise two matters. The first relates to the drug Spinraza. Children with spinal muscular dystrophy are still waiting on the roll-out of, and treatment with, Spinraza, despite the Minister’s announcement approving this drug last June. To date we have learned only three children are receiving the treatment out of a possible 25. We all remember the Minister’s major announcement but it seems obstacles have been put in the way of the roll-out. Any obstacles should have been foreseen before the Minister made the major announcement and gave such hope to the families involved. The Government appears to be excellent at making announcements but its follow through on them leaves much to be desired. The announcement about Spinraza was particularly sickening when it is children who are affected. Families have had their hopes dashed as they are not getting the treatment they were promised and about which the Government made a big deal. We need to get Spinraza back on the agenda and figure out how to roll it out as soon as possible.

The second issue I want to raise relates to the rent increases we are seeing in the private sector. The daft.ie report indicated that average rents have increased by €373 since 2008. The Minister is now targeting social housing rents in Dublin City Council by refusing to plug the hole in the council’s funding through central funds despite his promises. We know also that rents are now higher than mortgages. Students in Cork are paying more than €1,000 per month for a room. In Dublin 8, rents have increased by 125% in the past nine years. Rent costs in this city are insane. All Members mention them every week. We have Rebuilding Ireland but it has rebuilt nothing. We need to prioritise building houses on public lands. We also need to consider doing the unimaginable, namely, supporting private house builders. We need to look at VAT, development levies, Irish Water connection charges, ESB charges and figure out a way to relieve the upfront payment and have it staggered. We need to do something in respect of housing. We need to have a decent public house building project.

We cannot deny that we also need private housing, which is not being built. I ask the Leader to bring this message home because it is not acceptable. Young adults are not able to afford rent or buy their own homes. It is just unthinkable for them. They cannot even think about owning their own homes because the situation is so dire and the supply of housing in the country is so low.

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