18th Congress of EHA

Patient advocacy track 'personalised medicine'

Prof Anton Hagenbeek - Universitair Medisch Centrum Utrecht, Heidelberglaan, Netherlands

Dr Hagenbeek, thank you very much again for joining us at the ecancer studios. I know that you’re closely involved with the EHA’s advocacy programme, can you tell me what this means, exactly, for patient care?

Well it’s a very important development within the European Haematology Association and a number of doctors from the Board and from committees feel very committed to work together with patient organisations on a number of issues like availability of drugs, accessibility of haematological medicine that differs from country to country. We are doing an inventory all over Europe in the various countries of which essential haematological medicines are lacking and seeing whether we can, in discussion with pharmaceutical companies, in discussion with authorities, see how we can help and promote that those important drugs that sometimes mean life or death are being available on a continuous basis in principle in all European countries; we are the European Haematology Association. That’s one of the aspects, so availability of the important haematological medicines.

The second thing is that we have a special scientific working group within EHA on quality of life, that’s also a typical example that patients and doctors should find each other. It’s not a matter of just infusing those drugs with all the side effects but also having the right attention for how the patient fares after that in terms of side effects, in terms of maintaining some quality of life. Sometimes we have to hit hard to get rid of the malignancy but the other side of the coin is we should also focus on maintaining the highest possible level of quality of life. In particular if the patient is going to die, that’s another important part of our work, that we are also there and try to maintain the best quality of life. If no days can be added to the life, let’s try to add life to the days. That’s another important issue that we are discussing with patients.

Now this is a relatively new initiative, are you happy with the progress that’s being made so far?

Yes, well we are at the beginning, let’s be honest about that. Another thing that is of importance is to discuss together with patients how they feel about participating in clinical trials because we have a strong belief that we can only make progress step by step by running the appropriate trials, well designed approved trials, approved by ethical committees, patients have their influence on the final designs, whether it’s tolerable, it’s not too many bone marrow biopsies and all those important details. So we also involve patients there on the ethical issues of running clinical trials, informed consents. It’s being discussed on the European level by EHA in Brussels, we have a special political affairs committee that is also closely related to the advocacy track that is going to the authorities in Brussels to see whether the approval of clinical trials and the international collaboration can be smoother because there are so many guidelines, to be honest too many guidelines, meant to protect the patient. But if we have too many guidelines we are going to protect the tumour because there will be less and less interest in trials because it cannot be done any more.

So there’s a lot of work to be done and with the help of the patient societies, in particular, also because they are powerful and that is good, to go to the authorities and smooth things out so that we can really make progress in a much faster way.