RS: Jan Geissler, Ian Banks, a very warm welcome indeed to the Oncopolicy Forum 2012. You’re both here representing the Patient Advisory Committee of the European Cancer Organisation, ECCO. We’re already halfway through the day and having an amazing day. Maybe before we start talking a little bit about the role of patients in personalised medicine, maybe you can give me some reflections about today and about the position of patients generally in advocating for personalised cancer medicine? Ian?
IB: It’s a very good point, the two of us wouldn’t be sat here ten years ago because ten years ago there was no such thing really as patient representation at this level. So to have patient representatives and to have it mentioned from the platform as well of the importance of us being there really is a true reflection of just how seriously it’s being taken. Of course, ECCO now has its own Patient Advisory Committee with a vote on the board. These are all good pointers that people are listening to what patients are actually saying about their own fate, so to speak.
RS: Jan, how do you see things? Have they changed quite dramatically for you as well compared to five or ten years ago?
JG: Yes, of course. Oncopolicy is very important to us and about ten years ago there was also in the political debate there was no patient voice represented when European health policy was being defined. This has changed dramatically over the years due to the joint forces of different pan-European umbrella groups but also due to organisations like ECCO which have included the patient voice in their own policy debates like we have at the Oncopolicy Forum here. So a lot has happened over the past years and we’re very happy about that.
RS: It’s fantastic. So let’s just step away and start doing some of the really cool policy issues that are going to be dealt with today. One of them, of course, is inequalities. This is one of the issues at the moment that’s been really pertinent. It has already been a topic for discussion for ECCO last year. We’re talking about inequalities and personalised medicines this year; we’re aware that there is a widening gap in survival between the most affluent and the most deprived classes across Europe at the moment which is extremely worrying. But personalised medicine, do you think this is a panacea for inequalities or, as some commentators have made, this is going to become a luxury good and it could actually widen inequalities. What do you think? Jan, maybe I can start with you?
JG: Well I think there’s a risk and a benefit. Of course we are looking at the development of personalised medicine over the past ten years with great enthusiasm because for some cancers it has dramatically changed the life and survival and the journey of cancer patients. But we have about 200 biologically different cancers out there and only a small proportion, we heard about 30%, having even the biomarkers known today. But even a much smaller proportion of patients have access to personalised cancer care and personalised cancer medicine. One of the reasons is, of course, just the non-availability of personalised cancer drugs and treatments for certain cancers but secondly it’s connected to reimbursement in the healthcare system of different countries where there are strong inequalities between Western countries like Germany or the UK or France to some Central and Eastern European countries. So we can see a lot of inequalities and we need to address them.
RS: So, Ian, let’s take this up. You’re obviously from a country that has a National Institute of Clinical Excellence, one of the first health technology assessment programmes. And again voices on both sides which says this either prevents personalised medicines getting to patients, in other words widens inequalities with other countries, or says it’s the fairest way to ensure equitable distribution of the most cost-effective medicines. What’s your perspective as a patient?
IB: It’s interesting because the term rationing, which is very often used, and increasingly so at the moment, is actually being used in completely the wrong way. Rationing is where you distribute a limited resource irrespective of the person’s ability to pay. That’s rationing and we had that during the Second World War, even the King of the United Kingdom apparently had a ration book. But it was a fair and equitable way of going about things. Now, of course, if you can afford to pay you come out of the rationing area so really what we’re talking about is limitation, we’re limiting the access to medicines. That becomes important when we start to put guidelines together because what we know from the guidelines is that you will have different patients responding to different drugs and you can match these two things together. Some of these drugs, however, are very expensive and may well be outside of a budget of a low income group society or country. Does this mean, then, that we’re going to have to have two guidelines? That we’ll need one guideline which is the gold standard which is used in the very best medicines, the very best of the techniques, and then another guideline which is actually saying, “Well, this is the minimally acceptable level of the way that you would work for treating these patients”? Of course, if you happen to be the patients who are on the minimum level and you see patients who are being treated on the gold standard you’re going to ask, “Why me?” and that’s going to cause a lot of friction.
RS: So you’re both representing obviously Europe as a whole, that’s EU27. That’s a huge diversity of healthcare budgets, of most affluent countries, there are countries within Europe that could be considered quite deprived actually. So how, as a Patient Advisory Committee, are you tackling this because again the personalised medicine, the issue of pricing of medicines, of new biomarkers and, let’s be honest, all the way through to personalised cancer medicine in terms of surgical procedures, radiotherapy. What’s your perspective on how you should be tackling this?
IB: First of all we need to do what we are already doing and that has been, to the credit of ECCO actually, that is to have a true and honest debate, to not pretend that everybody is going to suddenly wake up in the morning and have access to all these wonderful medicines and all these wonderful drugs; to have a proper debate about how we’re going to deal with this. Unless we have that debate we will just live in some kind of fairy cuckoo land where we just expect it all to just happen. Given the fact that we’ve got a recession at the moment, that is going to be one of the driving forces. But there is one overarching vision, if you like, and statement which has to be taken into consideration. What we do know in a recession, that the first thing to suffer in a recession, is the health of a workforce and that the last thing to recover from a recession is the health of the workforce. So by investing now in these new drugs and these new technologies we may well make things better sooner of coming outside of the recession.
RS: And Jan, obviously you’re well recognised as being someone whose expertise is around communication and the use of the latest communication technologies around social media for engaging and democratising cancer information and personalised cancer medicines. How do you think what you’ve been working on in those particular areas can help the Patient Advisory Committee and personalised medicine promulgate these sorts of messages and this debate throughout Europe?
JG: I think what the Patient Advisory Committee does is promote the patient voice and the patient voice means we need empowered patients that can take decisions. The world is getting more complex in the sense it was presented here at the Oncopolicy Forum that twenty years ago we had one size fits all chemotherapies which were applied no matter, more or less, what tumour or what site or what genetic marker and so on. But now patients have different choices, they need to decide on the characteristics of different therapies; they need to decide between quality of life, effectiveness, hardest hit of the target, against maintaining quality of life. This doesn’t work without empowering the patient to understand and to take decisions together with the healthcare practitioner. In that sense personalised medicine comes with an obligation to empower patients, to increase literacy, to have more information available to patients, that’s why at the policy level the PAC is advocating for a rethink of how to empower patients, how to provide information to patients.
RS: That’s a very good segue, in a sense, into one of the big topics at the moment which is the way that the media is portraying personalised cancer medicines. Because in a sense a lot of people derive their information from reading the popular media, the broadsheets all the way through to very specialist magazines. There has been quite a lot of criticism, probably fairly mounted, against the media in terms of the hype of personalised medicine when the next control and cure is around the corner. Yet patients are seeing then difficulties or new drugs or new procedures not perhaps getting through into society, into clinical management, as fast as they should do. Where are the issues, do you think, from your perspective? Is this genuine hype? Is this a failure of the second translational gap? What do you think are the issues there?
IB: There’s absolutely nothing new about hype in medicine when it comes to the media. You could list a whole rack of the different cure-alls that never appeared and yet were on the front pages of the newspaper, ‘Cancer cured today,’ kind of approach. So there’s nothing new there but we have to live with the reality of the situation. The very truth of the matter is this is hugely exciting and you really couldn’t overstate it in terms of just how exciting the potential actually is here. It’s applying it into the real world that matters and things like quality of life, which is what Jan mentioned, these are the things that actually start to come to the surface. Is it any use in producing these wonderful medicines, prolonging life, if the quality of life is very, very poor. This is where our committee comes in, this is where the human element of the whole thing has to be injected in the way we’re thinking about these things. Doctors do tend to live in the ideal world because that’s the way doctors are trained: if everything was ideal what could they do, kind of thing. In the real world those things don’t happen and that’s where our committee comes in, to give doctors the perspective of the real world and what patients are thinking. So doctors don’t necessarily give patients what they want so much as what they think the patients need; we supply the want side.
RS: So this can be taken a little bit further with the communication and a sense of looking forward here. Because of this divergence that’s occurred, you’ve talked about the importance of the opportunities and the hope and the fact that a lot of science, actually, in terms of delivering as society is based on, as Peter says, the idea of hope, that it will produce the next controls and cures. But then it’s very easy to flip over the cliff and go into a hype situation and expectations are left dashed on the rock. So how, from a committee point of view and from a policy point of view, do you think you want to see the future in terms of being able to be realistic yet keeping that hope alive? Jan, what do you think is the approach to this?
JG: I think it’s important not only to look on medicines but to look holistically at personalised cancer care and that would take away a lot of hope we have at the moment on one hand about new medicines, on the other hand about the price of the box which are both very distorted pictures of what is happening in medicine at the moment. On one hand we need to see there is great progress on understanding the biology of cancer and on the other hand we just need to look end to end and say personalised cancer therapy is not something new, the biology and understanding is new so we need to look at surgery, at radiology, at psychosocial care, at patient advocacy, at medicine as a holistic picture and then think how can society afford, how can society best drive these developments to make personalised cancer care a reality. The PAC is a very good example for this because we have different patient advocates from different diseases, some solid tumours, some liquid tumours, different backgrounds, so we have a good reflection of different priorities also on the side of patients and we can feed that accumulated feedback of different diseases and different journeys into decision making in ECCO and also in health policy.
RS: So that’s a hugely important point in a sense, policies being very much focussed on the science, if you like, of personalised cancer medicine and the biology and perhaps over-focussed on the pharmaceutical nature as well.
IB: And that actually is a very good point because while we are waiting for these very clever new drugs to come along and while we’re waiting for these guidelines there’s another aspect which we haven’t touched on at all here and that is for the vast majority of cancer treatments the earlier the diagnosis then the better the outcome. Now, that doesn’t cost anything, that doesn’t need to wait for any new guidelines, doesn’t need to wait for any new regulations, we can use that now, we’ve got the tools to be able to get people to present sooner rather than later, melanoma being a classic example. If we can reduce that delay of definitive diagnosis we will do a great deal of what these drugs are designed to do. If people actually go far too late then really even the very best drugs in the world are not going to be able to help us as much as they could. So there we have a non-technical way of actually improving outcomes.
JG: And this is exactly where patient information kicks in because patients need to get to a centre of excellence, need to get access to proper diagnostics to quickly being diagnosed right, being treated by experts and not being let into progression of disease when probably all the new wonder treatments won’t work anymore. So I think this is very important and this applies to the whole chain of personalised cancer care and patient information as well.
RS: So let me just pick up on what you just said there, Jan, in terms of the early diagnosis and Ian was really reinforcing it. You mentioned personalised cancer care there, so you’re thinking of this from a committee perspective as something much broader than just personalised medicine but in the sense that cancer is still social, that you’re having to think about personalised cancer care as a whole. So if you pull all that together, what are the key planks that you have as a committee within the oncopolicy for the next few years? What are your key areas that you want to work on?
JG: One of the key cornerstones of our work in the PAC is actually collaboration because we need to collaborate not only with oncologists but with all the different, let’s say, areas of personalised cancer care and they are represented in the membership of ECCO. So we want to collaborate on the different levels as patients, as individual organisations, as patient advocates with all the different stakeholders in the system. I think that drives us as the Patient Advisory Committee collaboration.
IB: I think Jan has once again just hit the nail on the head. This is all about engaging as many facets, if you like, of society. Not just the scientific society, not just the medical society but also the media, also health literacy, also the politicians, these are the people who we need to be able to work with to get these messages across. Because while the clever scientists and the very clever doctors are out there doing these very clever things with clever drugs, we can be working away in terms of working with patients to make sure, for instance, that they go sooner rather than later when they find a problem because that can be critical in the outcomes, not just in terms of life expectancy but in the quality of life for that patient. Because, at the end of the day for the politicians, that means less money coming out of the economy to be able to look after these people in the first place.
RS: Yes, so holistic oncopolicy in a sense.
IB: Absolutely.
RS: Wonderful. Jan Geissler, Ian Banks, thank you very much indeed for your time today.