Hi guys,

We've passed 5,000 signatures. All these kind words and gestures of support have given our families (Theo and Kate's families) a great feeling that this therapy will be available for us soon in Ireland.

This week alone the concern over Zolgensma reimbursement has been raised to the Oireachtas a number of times by different parliament members. We were featured in the Irish Examiner Friday before last https://www.irishexaminer.com/news/arid-40705664.html

Things are moving forward and we are hopeful for some news in the coming weeks but we still need to push and fight on as Zolgensma needs to be made available for SMA going forward. Our attention is focused currently at the HSE in Ireland as the decision I've been assured is now in Ireland's hands. In Netherlands even though pricing negotiations are still ongoing the drug is made available in the meantime until things are finalized. I find it hard to believe the HSE have not adopted the same strategy. Instead familes are expected to wait until a million dollar deal between HSE and Novartis is agreed on ? They need the best treatment ASAP. Instead these children have to wait until a 'secret committee' (i.e. the Corporate Pharmaceutical Unit at the HSE (cpu@hse.ie) and Novartis) decides on the the price that works best for both parties. This is hard to understand and accept and is the purpose of this petition.

The treatment will no doubt mean a better quality of life for him and the best chance possible and everyone who signed here or wanting to sign should know that it will make a difference in their lives.

Thanks,

Shane