Keith Swanick (Fianna Fail) | Oireachtas source

As my party's health spokesperson, I am very aware of the harrowing cases of patients not getting access to life-changing medication, whether because of the HSE refusing to reimburse them or because of serious delays in the reimbursement process. The reimbursement process is broken and Ireland is now one of the worst countries in Europe for speed of access to new medications. Orphan drugs, in particular, are a serious casualty of the process as they are currently assessed through the same mechanism as all pharmaceutical products. Due to their small numbers, the companies involved enter into negotiations with a weaker hand which, when dealing with the HSE, often means they are left behind.

It does not help that a committee to evaluate drugs for rare diseases has yet to be set up, three years after a Government report recommended its establishment. Senator Reilly launched the national rare diseases plan and I commend him on that but it was back in 2014, 1,247 days ago. It now has a chairperson but no members and it is not expected to be in place before the first quarter of 2018. One drug in particular, vimizim, is the first effective treatment for mucopolysaccharidosis and it has thus far given patients a quality of life they would not otherwise have experienced but it will no longer be available after 5 December. Today I had the honour to meet with Grace McIntyre and her parents Padraig and Barbara, who are in the Visitors Gallery. This little nine year old girl, who has no life without vimizim, is one of two children in Ireland who are participating in a compassionate programme provided by Biomarin, the pharmaceutical company, but her parents are extremely fearful for her future and are living in limbo, not knowing what will happen to their daughter after 5 December. Can the Leader imagine how they are facing into Christmas this year? We need an urgent debate on this matter.