I know this is a topic the Minister of State is very familiar with, as she has heard me raise it many times within our parliamentary party meetings. This is something she has heard plenty of times from me in the past few years. It is something I am very passionate about. I have more or less dedicated six years of my job as a public representative to pursuing various drugs for rare diseases. I have a feeling I know what will be contained in the answer in front of the Minister of State. It will probably be something about the fact that the State is spending more money than ever on drugs for rare diseases and drugs in general. The spend is more than €4 billion. What I would like to hammer home is that a tiny fraction of that - less than 1% - is dedicated to new drugs, specifically drugs for rare diseases. When I submitted this question, I specifically wanted to talk about Friedreich's ataxia and the drug Skyclarys, which is currently under consideration by the National Centre for Pharmacoeconomics, NCPE, and the drugs group. It is a degenerative disease. I know the Minister of State is familiar with it. There are hundreds of diseases out there that would break her heart or the heart of anyone in this House if they affected a brother, sister, son or daughter of theirs. It is heartbreaking to see the stuff people are going through on a daily basis. The difficulty I have is that we have been blaming the process for too long. It clearly does not work and is fundamentally broken. At various stages, both the Fianna Fáil party leader and the Fine Gael party leader have said the process is broken. They are now in a position to change the process but we have not looked at it in a meaningful way in the six years we have been in power together. We have given a commitment in the programme for Government and I want to see us follow through on it. First, we must undertake to provide an early access scheme for people to access many of the drugs we are talking about this morning. Second, we must fundamentally overhaul the reimbursement system. They are two commitments in the programme for Government. I would like to see in the reply that the Minister has finally embarked on the task of starting that work, specifically on Skyclarys, which is currently under consideration.
Sentiment score: 0.12
The NCPE is waiting for a response from the drugs company at the moment but I hope that, in the coming months, we will be in a position where the 200 patients affected will get access to the drug.
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I thank the Minister of State for the response. It is predictable, although I do not say that to be dismissive. I know a lot of this and have known it for some time. The point I made in my initial salvo was that we rank 23rd out of 27 EU countries with regard to reimbursement for rare disease drugs. That is a fact. Whether it is Skyclarys or some other drug for some other ailment, the fact of the matter is that Ireland is a laggard among our EU counterparts in terms of reimbursement. I understand that engagement with this company has been attempted. I have not come across this company in the past. I wrote to it myself last week to look for engagement. I would like to think it might do something immediate, short-term and local with patients to give them early access in the absence of State intervention. However, fundamentally, we must be truthful with ourselves in here and recognise that the system is flawed. It is the same system we have had for decades. Any common drug or other product on the shelf of a pharmacy that costs you €2 or €3 goes through the same process as one of these drugs that costs hundreds of thousands of euro. If we fail to acknowledge that fundamental flaw in the system, this issue is going to keep being repeated.
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I have the response from the Minister of State.
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