EC: We are today in Chicago at the 2019 ASCO annual meeting. This is part of our series of interviews to world cancer leaders in order to know his vision, his or her vision, how they understand the current picture of cancer in the world and how they evaluate the possibility of future actions to improve the situation. Today we have with us Professor Tezer Kutluk from Turkey. He’s a very well-known paediatric oncologist and he was President of UICC and a strong supporter of UICC for many years. He is today a member of the Board of the NCD Alliance. Dr Kutluk, how are you?
TK: Thank you so much, very well thank you.
EC: You are a practising doctor in Turkey but you have a wider vision about the situation of cancer in many parts of the world. So how do you envision that in future years the current picture will be changing, of course, and how the organisations are doing in order to be ready to face these situations? Do you think that the complement with other diseases, as is the case of the NCD Alliance, or the situation of moving cancer actions alone, how do you understand the problem and your vision about working alone the cancer community or in coordination?
TK: I’d like to start with the burden of cancer was about 14 million new cases per year based on the data collected in 2012. When we came to 2018 the number of cancers per year increased to 18 million. We have solutions – palliation; we have solutions – screening; the results of the treatment is getting much, much better but still the number of cases are increasing. Other than the treatment it should be at the top level of priority, first at the government level. Then the second thing is cancer ensures that the world should weigh to work together, not only within their network but, as you said, with other networks. Because non-communicable diseases – cardiovascular diseases, mental diseases, diabetes, obesity – they all have common causes. Overall the burden of all these chronic diseases is a huge burden to the government, financially and humanitarian reasons. So all stakeholders, including NGOs, government, private sector, patient organisations, we have to work together and we have to weigh to work with the new methods of innovation, new tools. The classical tools brought us to here, we are in a better position than we had in the past, survival is increasing, but still when we look at the number of people getting cancer and the number of people dying due to cancer is increasing. So innovation, not only the technical level but innovation on the management and handling, the way of the policy level, is very critical.
EC: So, if I understand your idea clearly you are talking about a whole of society approach?
TK: Right.
EC: So in this regard I understand this, but who will take the lead? Because of course the economic impact, the social impact, but should it be the governments through the United Nations? I don’t know, because after the 2011 high level meeting and now we are eight years later, it seems that the improvement was not so relevant. Should it be the doctors and the medical community? I don’t know because if they, or the population, have no proper access the doctors really are not very efficient in solving these issues. So how can we really move things in order to improve this exchange between all these stakeholders in a proactive way, which types of actions?
TK: I think this is a multi-stakeholder involvement, as you said, you articulated it as the whole society approach. This is true. Let’s look at how the big organisations are managed, let’s look at… we are in the ASCO meeting, ASCO is a clinical oncology society but all stakeholders, medical oncologists, radiation oncologists, basic scientists, patients, they are all involved in this. And depending on the problem they focus the leadership is also changing, rotating. So there are some issues the government should lead; there are some issues NGOs must lead. So the leadership, I would not say not only one stakeholder or group will lead this orchestrated joint effort.
EC: So this is an interesting point because thinking about this, for example in the case of the UICC one of the strategies of the UICC is this improvement but focussed in cities – the City Cancer Challenge Project. So in this case the stakeholders at the city level, they are taking the lead. So this is an expression of your idea about different situations and different stakeholders and leading the actions.
TK: In different settings, when you go to one country, that country, if you go to my country, Turkey, the government has the power on healthcare management. Of course civil society is emerging but still the main decision maker is the government. What the role for the medical community, professional organisations, NGOs, they don’t need to lead but taking part in it is very critical. It doesn’t matter if it’s 5% of it, 10% of it, you might have 5% of it but it could be very critical.
EC: So do you really mention the point, it’s a difficult one really to face, you have a country, like others, in which most of the responsibility of the cancer care relies on the government. In this country, in the US, the responsibility is an individual responsibility and you have mixed systems. So in this regard how do you see that in the future more patients, aging of the population, environmental issues? Of course, I can make my personal prevention of cancer with my diet but I cannot make my personal prevention of the air or the radon. Tell me some ideas of yours about this situation.
TK: Patient involvement is much more critical than it is in the past. The patient organisations are getting more stronger. But when we look at the global view of the patients’ involvement on decision making, leading and managing the control of the disease still it’s not there yet. What happens in low and middle income countries, when you go to high income countries there are strong patient organisations, they have good collaboration and they are partnering with the international organisations, professional organisations and other civil society organisations. But when you go to low and middle income countries the number of patient organisations is not at that level yet plus the level of understanding is not there yet, the quality of the work done by the patient organisations. Why? It’s not their fault, it’s because of the linkage between networking, between the professional organisation and the patient organisation, is not established yet. Patient organisations have good guidance from the professionals. Definitely we need more patient involvement. What happens in low and middle income countries, let me give you some examples.
EC: Please.
TK: In a low and middle income country what happens is high tech medicine was brought to market with high prices. There is a public demand and public pressure from the patients, patient organisations, every day in the newspaper. There could be some resistance from the government who will decide on the [?? 11:44] financially, ethically, there are many issues. One year of treatment with the new high tech drugs are so expensive but this is the solution. So it doesn’t matter where you live, in a low income country or high income country, people request it because people are easily reaching the information. Even in a low income country they learn quickly what is the latest medicine for their disease treatment.
EC: I agree.
TK: There is a political sensitivity on this.
EC: I agree but we have a problem in this mechanism because usually if the patients are better educated usually they have the scientific information. The scientific information usually goes to the latest achievement. But on the other hand the government needs public policy that is based on other considerations – access but possibilities of the healthcare system and also some things that perhaps are new but they are all things that are better. An example, the patient organisation, they ask for mammography and the country is not ready for mammography for all the country. The patient organisation asks for Pap smears and perhaps another screening intervention, visual inspection, is better. So how do you see this tension between the patient organisations, the doctors and the public policy at the governmental level?
TK: I think we can approach this issue by providing different packages, first of all. For any country. It doesn’t matter if it’s a high income country or low income, we should have a basic package. The basic package is the proven classical methods for every patient for every situation. It should be available anywhere. This package, depending on the financial situation, depending on the settings and the needs in that particular region of the world, can be different. When you go to a country where there are no radiotherapy devices your priority is not proton therapy, the basic radiotherapy package.
EC: Yes, I understand but currently the patient organisations don’t understand very easily, they want more. The doctors want new things and the government is restricting these types of things. So I agree with the package but, at the same time, in order that the package is really accepted, it is necessary to educate the population, the patients and the doctors. Do you have some comment? Which would be the role, for example, of the educational role of not only the scientific organisation but organisations like UICC or EHA? Do you think that they can, at a certain point, WHO, send a message about the inferred request for packages that are good packages, are not the best but are good because they are possible to apply to a large proportion of the population?
TK: Public education is one of the most essential things from prevention to treatment at every step of the cancer control. There is no doubt about it. Who will be responsible for public education? All of us are responsible; there are some responsibilities for the government but there is a major role for civil society organisations. Professional organisations are heavily overloaded with their clinical work, the scientific ones. So that’s the main responsibility will be for the civil society organisations, patient organisations. But what the problem is for the low and middle income countries is language.
EC: Is?
TK: Language. We are faced with the language as a major barrier. When you go to high income countries everybody is able to access because most of the available information is in English all over the world. When you go to a low and middle income country if there is not a strong structure at the professional level, civil society level, government level, people are suffering to reach the most updated information.
EC: I like this point that you make.
TK: That creates chaos on the relationship, on the establishment and the shaping the future.
EC: Do you think that politicians should be also educated in the aspect of health and cancer? They know the problem, they want to solve the problem.
TK: They know the problem but the politicians are also so busy, so busy with their agenda. Putting something in the priority list of the politicians could be very difficult. Of course all of us, civil society organisations, professional societies, should have a focus on how can we put this as a priority on the political agenda. But without waiting to put them on the political agenda civil society should do whatever they can themselves, on the training, education. We should not wait for magic from somebody else. First do it yourself, whatever you can. That would make a big difference on different levels.
EC: I think that we reviewed some of the main aspects related with better cancer control, like education, like access, packages of treatment. Do you have a final comment, some burning issue that you think should be addressed in a better way? Do you envision some priority that is today not really present in the agendas?
TK: There is no need to stress again the importance of the primary issues and all other things. But what happens on the patient care side, technology and the new high tech medicines are making access to care more complicated than it is. I think we should have a focus on how it will be, the access to care, in ten years, twenty years; we should have a focus on that. Of course shall we wait for the prices getting cheaper? How can we, even with today’s technology, we have so many problems on access to care in different parts of the world. So we should think about it, how can we make possible for the benefit of the people so they can access the best available care easily.
EC: Thank you very much. I think that one of the interesting things, everyone when we talk, is that there are so many aspects and many of the aspects are not purely medical. Usually the people think that the cure for cancer will be obtained through new treatments and when you describe the situation and the complexity of the problem and doing things that are not treatment, are education, participation of other stakeholders, things that are already in the society but outside that medical thinking about a disease and a treatment. So this conversation is always important and may need to transmit to the people the idea that apart from the medical things there are many issues that should be addressed in different aspects of the community.
TK: Exactly. I would name cancer not only as a medical disease, a social disease, a medical disease, a common disease, whatever you name it it’s more than being a disease.
EC: Exactly, it’s a problem of human development. Thank you very much.
TK: Thank you so much.
EC: Thank you very much, Dr Kutluk.
