'It is not possible to practise responsible medicine without counting the costs'

In September 2012 the Portuguese National Ethics Council for the Life Sciencespublished a report setting out a model of public deliberation to deal with the question of how to evaluate costly medicines.  The report was been controversial in Portugal and has led to much public discussion.  On 5 October 2012, Expresso an influential weekly Portuguese journal published an interview by Micael Pereira in which he asked Albert Weale for a view.  The main part of the interview appears here in translation.

Does the Opinion of the Portuguese National Ethics Council for the Life Sciences offer a good proposal? 
The opinion offers a very good starting-point. Many of the arguments used are discussed in other countries.  I think, however, that the Council itself knows that there is still much work to be done. 

But the Council assumes that there is not much time to decide on the cuts because of the requirements of the troika. So one must move quickly and implement measures that are already used in other countries.  Is that a sensible option?
I would be surprised if there were another alternative.  There is a process of scientific information on medicines in Portugal but to establish a system that is effective in finding the best therapies at a good price takes time. In the case of the United Kingdom, it took two to three years for NICE, the National Institute for Health and Clinical Excellence, to define its rules of procedure so that it could have effective solutions. 

Are there quick solutions?
I do not know enough about the Portuguese system to know how this would take a responsible form.  However, in relation to pharmaceuticals, industry is introducing new products that are very expensive.  I will give you a recent example.  There is a treatment for haemophilia that costs six thousand euros for each injection and the injection has to be administered every two hours.  It is indicated for haemophiliacs when normal treatments fail.  Someone was admitted into a German hospital when this therapy was started. The patient eventually cost more that two million euros.  This is an extreme case but there are other examples like this.

Is this a general trend in the pharmaceutical industry?
The pharmaceutical industry has had difficulty finding blockbusters, medicines that can be sold on a large scale.  So, they are seeking small groups of patients with particular medical conditions, with expensive therapies involved.  A responsible health policy will decide what is worth the money that you spend taking into account medicines that are so expensive.  Moreover, for Portugal, is it wise to spend resources trying to duplicate work that has already been done in other countries?  NICE has ruled on more than 450 interventions. Documentation is available for consultation and it is very good.

The President of the Council on Ethics has questioned whether it is reasonable to pay 100 thousand or 200 thousand euros to prolong someone's life two months.  Is it reasonable to deny treatment to a patient with terminal cancer?
It is a very complicated issue. One of the reasons why the theme of cancer treatments is so controversial is that cancer affects people between 50 and 70.  It is a difficult age to have a terminal illness. Most likely you have worked your whole life and paid taxes, and people expect they will enjoy their leisure and be spending more time with their grandchildren during retirement.   At the final stages of ones life, months can be very valuable. Are you able to put your affairs in order? This is one of the things that most preoccupies people.  But I judge that the President of the Council on Ethics has done very well to raise the question.  It particularly concerns the ethics of opportunity costs.

In the conference he told the story of two British people who saw their cancer treatments denied by the NHS even after they offered to pay for medication that costs thousands of euros per month.   The NHS refused to administer these medicines.  Is this refusal not unfair?
This is another case in which circumstances are very complicated.  The policy in the UK in relation to this issue has changed.  Whether this change is good is hard to answer.  However, taking into account the astronomical costs of pharmaceutical that are to be launched we can not escape the problem. A strong argument in bioethics is whether we should not slow down scientific innovation.  One reason why is because innovation is exceeding our ability to deal with it.

The Chairman of the Ordem dos Médicos [the Portuguese Medical Regulatory Authority – equivalent to the UK's General Medical Council] said that internal investigations would be opened for all colleagues who signed the opinion arguing that there are ethical principles involved. Is this reaction extreme?
It is not possible to practice responsible medicine without considering the costs. If you do something for A, you are not able to do something for B.  That is the rule. If we act as if the patient we have ahead of us was the only thing that matters then we tell our colleagues that our patient is more important than their patients. This is what we would be saying in fact.