Pádraig O'Sullivan (Cork North Central, Fianna Fail) | Oireachtas source

It will be of no surprise to the Taoiseach that I will raise the issue of rare diseases again this week. Let us bear in mind that Rare Disease Day was last week. I would like to raise the issue of the Mazars report, which is due to be published shortly. We have spoken about it before and I welcome its publication, but the reality is that the report will not meaningfully reduce the times for which people are waiting for the approval of an orphan drug. When this Government took office, there was an average of more than 900 days for a drug to be approved through the HTA process. When this Government finishes office, which will be any time between now and next year, that approval process will still take more than 900 days. I met a young girl last week who was on her way to the health committee with her mother.

She suffers with epidermolysis bullosa, EB. She was before the committee with Debra Ireland. There is a pharma company promoting the fact that it is ready to go through the HTA process right now with a drug it has developed. I found it very difficult to explain to her mother that the child is going to be waiting 900 days. That is four hours every morning changing her bandages in agony for the next 900 days while they wait for the drug in question to be approved. I urge the Taoiseach to do his best in terms of the Mazars report.

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