Oireachtas Joint and Select Committees

Wednesday, 21 November 2018

Joint Oireachtas Committee on Health

Evaluating Orphan Drugs: Discussion (Resumed)

9:00 am

Photo of Louise O'ReillyLouise O'Reilly (Dublin Fingal, Sinn Fein) | Oireachtas source

I thank the witnesses for coming in this morning. We have talked a little about bringing transparency into the process but we keep coming up against the barrier of commercial sensitivity. Is there any country that does it better? Could we look to Scotland or replicate what is being done in any other country? Do we need to reinvent the wheel if another country has gone to the trouble of working out the process well?

The process here is flawed and those who are central to it very often seem to be furthest away from it. The witnesses will be aware of my views on this issue as I have discussed it with them previously. Recently there was interaction between massive pharmaceutical companies, the Government, patient advocates and politicians and we ended up being used as pawns in a game being played by the companies and part of that was because of the process. The companies were putting pressure on us to put pressure on the Government. People came to the Dáil waving pieces of paper around, screaming and asking "What price for a life?". All of this is extremely emotive and is a really poor way for us to have to make decisions. There has to be a better way. At the end of the process, if it does not work, how can we reasonably say "No"? Is there evidence from other countries that suggest that we can do so? At the moment, what happens is that if the drug is over a certain price, that is it. The answer is going to be "No" and then we get into a long, drawn out process. That is clearly not working and is not satisfying anybody. In the event that we go through the process but there is just not sufficient evidence in terms of positive outcomes to justify the expense, what happens? I do not mean to sound cold but are there countries where this works? Is there anywhere where patients and patient advocates are so centrally involved in the process that they understand that a drug might not be for them? That seems to be the hardest part. Patients say that if the answer is "No", they will accept it. If they are told that it does not work, they will accept that but the "No" is always on price. It does not seem that sufficient evidence is being presented back but when one turns on the radio, one hears people who are central to the process saying that a drug is not good value for money. Then we are back on the merry-go-round, shouting at the Minister and so forth and it all keeps coming back to the same place. There has to be a better way to do it. There also has to be a way to do it better if the evidence is not there to support a drug. Do other countries get it right? If so, I ask the witnesses to elaborate on that.

How many times has the technology assessment review group met? Is there a hope that it will review and improve the process, particularly in the context of the patient and advocate involvement? My last question relates to overall costs and the issues that are not really taken into consideration. I refer here to the additional burden on the health service. Perhaps burden is the wrong word but if drugs are not made available then presumably the everyday crises in the health service like trolley waits, waiting lists and so on will have a more profound impact on the people the witnesses are representing. Like everyone, they clearly want to be able to stay out of hospital. Is there evidence of higher incidence of hospital presentation for the groups that the witnesses are representing? Is there any way of identifying what the consequent savings to the health service might be? I know that is not considered here but it is considered elsewhere. Part of any assessment process is to weigh one factor against another. It is hard to quantify in some instances but it is something that should be taken into consideration and offset against the cost. While I do not agree that cost is the only factor, it would be silly to pretend that it is not an important one.

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