Dáil debates

Thursday, 31 March 2022

Saincheisteanna Tráthúla - Topical Issue Debate

Medicinal Products

4:55 pm

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

Last week, following the announcement of the retirement of the Chief Medical Officer, I noted that the list of the CMO's accomplishments included the publication of the previous national rare disease plan. The plan was published in 2014 and extended until 2018. Since then, the old national rare disease plan has not been replaced. That made me wonder what we have done in the past four years about the publication of a new plan. A new plan is important because there are approximately 300,000 people in Ireland who suffer from a rare disease.

Last year, the Minister for Health allocated the largest budget to rare diseases - €50 million - in the history of the State. That was very welcome. However, the difficulty is not only that 300,000 patients need to see the publication of the plan but also the startling statistic that, globally, 30% of all children who are unfortunate enough to have a rare disease, whether they contract it or it is genetic, will die by the age of five years. That is a scary statistic and an unfortunate truth. In this country we are laggards in our provision for those with rare diseases. I say that because our national rare disease plan is yet to be published, despite the fact that "publishing an updated national rare diseases plan" is a priority in the programme for Government. We are two years into the lifetime of this Government. Can we have an update on the publication of that plan?

Linked to that is the Mazars report that was supposed to look into the higher technical assessment, HTA, process for the reimbursement of orphan drugs for rare diseases. It was commissioned in 2017 and was submitted to the Department of Health in 2020. It has essentially sat on somebody's desk for the last two years, unpublished, at a cost to the State of €86,000. The Minister of State might not have the details to hand but I would love to know where the Mazars report is. It is incomprehensible that we would spend so much money on a report and leave it to gather dust. It will contain valuable insights into how we plan for rare diseases in the future. I would love to know what is in the report. It must be damning or there must be something coming that will require dramatic change because we seem to be afraid to publish it. I want to see what will happen with the Mazars report and would appreciate an update.

I have been interested in this area since I met some affected families about two years ago. I have spoken before of how difficult it is to sit in people's kitchens and listen to them say that if they do not get access to a drug, their health will seriously deteriorate and in many cases they will die. It is very hard to have those conversations. As I have said previously to the Minister for Health, the average waiting time in this country to approve a drug for a rare disease is 1,200 days. People wait nearly four years to be told whether they will have access to a potentially life-saving drug. Even in that time, it could take 400 days just to negotiate with a pharmaceutical company. Many of the delays in the area of rare diseases are administrative and bureaucratic. Surely we can do things an awful lot better.

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