Oireachtas Joint and Select Committees

Wednesday, 12 July 2017

Joint Oireachtas Committee on Health

Evaluating Orphan Drugs: Discussion

9:00 am

Mr. John Hennessy:

I will answer Deputy Healy-Rae's point and Professor Barry might come in on it also. The Deputy raised the issue of putting a price on life, or appearing to put a price on life. That is not what we do and Professor Barry may have thoughts on this. I concur with Deputy Healy-Rae on the responsibility that lies with pharmaceutical companies to behave in an ethical manner on these issues, because patients and families are directly involved. I refer in particular to the occasional practice of putting patients on clinical trials, providing access for the duration of the clinical trials and then threatening to withdraw the drug. In fairness, most pharmaceutical companies do not engage in this practice but some obviously do, and this would not be regarded as ethical behaviour by the HSE. Professor Barry will deal with the price on life issue.