Oireachtas Joint and Select Committees

Wednesday, 12 July 2017

Joint Oireachtas Committee on Health

Evaluating Orphan Drugs: Discussion

9:00 am

Photo of John BrassilJohn Brassil (Kerry, Fianna Fail)
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I welcome the witnesses and thank them for attending the meeting. I have some general questions. We have heard that approximately 14% of the health budget is spent on drugs. Could we get a breakdown of how much of that 14% is spent on high-tech or orphan drugs in order that we can make comparisons?

Could Professor Barry tell us where we lie in comparison with other EU countries on drug spend and high-tech drug spend? The German model has been mentioned. Once a drug has been approved by the European Medicines Agency, EMA, it is available and the price is negotiated. A drug would often be paid for at a specific rate and between ten and 18 months later a price would be agreed and the company would reimburse the state any overpayment. German people and governments are known for their efficiency. A model based on that one would be well worth considering, even if we need legislation to introduce it. We need to do something about orphan drugs. There are many patients with different conditions who are as deserving of care as any other citizen and we have a responsibility to provide that.

How many people work in Professor Barry's office full time to back him up in the important work he does? How often do they meet to decide on specific drugs? Deputy Kelly referred to delays and the feedback we get is that it takes a long time to get a decision over the line. If that has to be reviewed the process takes an inordinate length of time. When Professor Barry started out he was considering 20 proposals a year, now he is considering 70. Have his resources increased in the same proportion? If not they should. Those issues are interlinked.

A compelling case has been made to me about Respreeza-Alpha 1. One of my constituents has the condition and I have met others who are on the drug and those who are not. Even speaking to people a doctor could tell automatically if a person was taking it. The difference in their quality of life is huge. I cannot stress enough the importance of getting that drug over the line. When will the decision be made on that?

Does Professor Barry interact with, and refer back to, the many patient advocacy groups? They do a great deal of valuable hard work and I sometimes get the impression that when a decision is made, the drug company is informed and they are left out of the loop. That needs to be corrected. All advocacy groups need to be kept informed as fully as possible.