Shane Cassells (Fianna Fail) | Oireachtas source

I wish to raise the issue of access to vaccines for rare diseases where the vaccines are only available abroad and the cost of accessing these life-saving vaccines is prohibitive. A very high-profile case in my own county was highlighted last weekend involving a five-year-old boy called Nahyan Javed who has neuroblastoma. Since last year when a tumour was discovered behind his heart, he has undergone nine chemotherapy sessions, a stem cell transplant and immunotherapy. While this has stemmed its progression, the condition is so aggressive that there is a 70% chance of it returning. There is a vaccine that prevents relapse but, of course, it is only available in the US and the cost is a whopping €375,000, which is simply beyond the means of his family and indeed any other family. The family is going to fight for their son's life and the chance to access this vaccine. The issue for this family and many other families is access to vaccines to prevent relapses as opposed to the actual treatment itself because they are needed but their cost is prohibitive. It involves bringing such treatments under the scope of the treatment abroad scheme. I pay tribute to the massive fund-raising efforts on behalf of this family to help it achieve that figure of €375,000. A man who is well known across County Meath, Keith Russell, completed a 263-mile run at the weekend in County Down, which was an amazing feat, to raise money for this family, as he did for many years for his own daughter, Alanna, who tragically died some years ago.I pay tribute to him and all of the families who are trying to help this particular family. I would appreciate it if, as a State, we could look into trying to provide families with access to funding for these rare diseases.