Sameer Koul on Cancer in Kashmir

A surgeon for nearly three decades, Dr Sameer Koul has a global exposure in managing the people afflicted by cancer. He has never stopped living in Kashmir and has very orthodox views on turmoil, tensions and the community he belongs to. Though he has been getting in and out of the political parties in last few years, Tasavur Mushtaq had a long conversion with the specialist at his Nishat residence to understand how Kashmir mismatches the response to a crisis that is too huge for the existing infrastructure

KASHMIR LIFE (KL): Is it correct that Kashmir is emerging as the new cancer capital in North India?

DR SAMEER KOUL (DSK): For the right answer, we needed to have a lot of statistics. We need data for the last ten years. But we just have started with the hospital-based cancer registry at the SKIMS now, about two years back. Figures will come out in next 2-4 years and then it may be possible to conclusively say yes, if it is so. For the moment you will have to suffice by just an observational analysis thatme and the other oncologists share that cancer cases here are plentiful. Numbers have increased. But the population has increased also.

The second reason is longevity has increased. About 15 years back, people generally tended to die off a disease by 55 to 60. Today a lot of 80-year-old are walking around and some of them in pretty good shape. So the cancers of old age have got added to it.

Cancer is a non-communicable disease and therefore it strikes more towards later part of life. Not to say that there are no cancers of young age, there are. Cancers of children are quite plentiful, blood cancers, they are specific for that age group.

So if you have people living longer which you do have, the number of cancer cases increase automatically.

The third reason is that today you have a name for the disease. There is the diagnosis and you have a very vibrant media which talks about it, writes about it so this diagnosis is mentioned from mouth to mouth and heard very often. So the awareness of the disease has also gone up. The overall effect is what you see. Yes, there is cancer in almost every second house in Kashmir.

There are different cancers of the north. The north of every county, whichever part you will go to, has an incidence of increase in certain cancers. North of Iran, northern tip-of of China, the northern tip-of Afghanistan, you will find similar cancers of the upper aero digestive tract, which means food pipe, oesophagus, gastro-oesophageal junction, stomach, and colon. These are common cancers up in the north.

It may have a lot to do with the kind of the diet we tend to eat. We give the reason that in the colder climate you need too hot food, more spices, more meat, I don’t know how much that is correct, whether you need or you don’t but these too play a positive role in higher incidence of these cancers in a place like Jammu & Kashmir.

In Kashmir, you have oesophageal, stomach, colon, prostrate and lung cancer in the men. In the females, you have a lot of breast cancers and ovarian cancers. You don’t have cervical cancer as much here. We don’t have any oral cancer here because people don’t chew tobacco and paan. So the cancer demography varies in different parts of the country as it varies from the developing world to the developed world. But yes we have a lot of cancer here. The digestive tract is the commonest.

The conflict has affected the infrastructure development for cancer control adversely in this part of the country. I have to say that even lots of smaller B-towns now have adequate facilities to treat this disease. Things have become better in this state also but not at the same rate as they are elsewhere in the world. So we have a problem.

KL: Gilgit-Baltistan is also north but it reports lesser cases. Even Jammu has slightly lesser rate?

SK: Jammu has a slightly lesser rate but they have different cancer. They have a very common stone producing cancers of the gall bladder and urinary bladder. In these cases, stones in the bladders keep rubbing against the wall and you leave them alone perhaps succumbing to the old theory that a stone which does not give you pain is to be left alone. But these stones keep irritating the bladder walls and produce a lot of cancers. So the type is different and perhaps the cancer recording and awareness levels are still lower. In the real sense, whether there is a difference in intensity and incidence, we won’t be able to say that. So in the end when recording improves, awareness level in Jammu division improves and also the treatment facility improves, you may come to a different conclusion.

Comparatively, within the state, I think Kashmir is better off as far as active cancer treatment facilities are concerned. But we are not even speaking of about prevention and the screening of high-risk cancers.

There are issues at all levels and the government has not still woken up to that. Although the general awareness level of health in this state is quite higher compared to a lot of other states. People take it as a priority and make an effort to get it sorted out but numbers are too many and infrastructure is not as much.

This state should have a cancer hospital of its own long back. I don’t know why it never happened. Also, diagnostics have improved in last ten years but not up to the mark still. People have to wait for these tumour marker levels, for immune histo- chemical diagnosis. After biopsies, people have to wait for PET (Positron Emission Tomography) scans and go outside the state quite often.

People here have to wait for radiation machines of the right type, the newer models linear accelerators which give more concentrated and more affective doses without causing too much of scattering and side effects. So people have to go through a lot of grovel.

Once anybody gets cancer, even a common cold thereafter is linked to the disease and they want answers. But how many of these patients can actually approach their doctor at any point of time. Basically, we have a 9 to 5 kind of attitude here. People switch off their cell phones.

Above all, I hate to say that, the attitude is not right. A cancer patient needs empathy. He needs help. But help doesn’t only have to be delivered across the table to somebody and the story end there. It is 24 hours job. Once anybody gets cancer, even a common cold thereafter is linked to the disease and they want answers. But how many of these patients can actually approach their doctor at any point of time. Basically, we have a 9 to 5 kind of attitude here. People switch off their cell phones. They shouldn’t do that because I think one of the advantages of having round the clock cell phone is also the ability of the patient to get to you any point of time. It is a service that you are providing. So I think to a large extent, rules of service industry should predominate, which means, you are looking after somebody’s health and are responsible for it. Illness keeps no timing. It doesn’t stay on a 9 to 5 schedule. It can come at any odd levels and you have to be open to their ingress.

It can get difficult for the doctors. Every weekend I am in Srinagar. Part of it is my own selfishness because I try to maintain my sanity by coming here and looking back at where I work and resolve certain things in my mind because I have been at it for last thirty years. It can get very intense. Cancer treatment is about relationships. You come across a cancer patient and his/her family and they are with you for whatever years they live and then when they die it takes something out of you. It is the relationship which has ended. So many relationships around you ending all the time, it can be quite cumbersome. It can be psychologically draining. After all, you are a human being. The family across you is going through other than a death. Death happens and someone dies in an accident and that is it. But these people carry on with the disease sometimes for months, years, sometimes even scores of years, even decades. And then at some point in time, cancer recurs and unfortunately more often in this part of the world because we tend to diagnose them at later stages and results are not that great. So it can be psychologically draining and I understand that there is a need for the oncologist also to protect his or her sanity but that doesn’t take away from the fact that one needs to invest psychologically in terms of time, effort and right attitude in treating these patients. So empathy is more important than a PET scan.

It is the worst time for that family. Everything is threadbare. That family is under maximum strain in terms of finances, social relationships, relationships outside the family, occupation, social taboos. And they malfunction. For instance, when a patient talks to me, I have to quite often say the same thing ten times over because it doesn’t register. The mind is all blank because it is difficult to come to terms with the diagnosis of cancer. When a patient comes across, it takes them sometimes days and weeks to cope with. They go through depression, denial. They get angry with God. Some of them haven’t even smoked. Some of them even haven’t non-veg. So for the love of God; they can’t understand why they got it. Because in their mind, they think it is retribution from God but they can’t understand why and they ask this question. The answers are more complex than what an average person can understand.

cancer has a lot to with a genetic message, in your genes, the kind of DNA’s and the way they are coded together and how they are matched together decides whether you get it or not.

For instance answer to your question regarding Baltistan may simply be that it is a genetic difference, because cancer has a lot to with a genetic message, in your genes, the kind of DNA’s and the way they are coded together and how they are matched together decides whether you get it or not.

I am sure you are aware of the newer tests of genomics and molecular diagnosis that have come into power and fortunately we are able to use that at least in major cities now, even in India. Obviously, it comes at a huge expense. It is not affordable at the moment but yes we are able to predict even the likelihood and the percentages some diseases will occur in an individual. So there comes a role of prevention. One-third of cancers across the world are preventable which means you can save from a sure death. If you just prevent them, obviously it is not as simple as I make it sound like the financial situations.

There is not enough ingress of insurance in our country and particularly in J&K. If the government or some group here could create awareness amongst the people that they need to buy medical insurance, they would do a great job. It would be a tremendous impactful thing to happen just if someone convinces people in Kashmir that they need to think in terms of medical insurance. They haven’t still understood the concept.

Let me tell you there is no way forward at all without the medical insurance. Because good treatment is capital intensive and it has to be expensive. It is bound to cost more. This is the problem we saw in the west. As we get more and more developed, costs are going to go high. That is why there is the huge talk of value in cancer care, now. Affordability. That the kind of treatment you are giving, are you giving value?

We have not even begun. The government also needs to have a vision for its people in terms of cancer care. There has been none. And whatever you see happening is just happening somewhere by individual enterprise.

The doctors here are very well trained that is why when they go into environments outside the state, you find they do very well. You will be surprised most of the Kashmiris doctors, be they Kashmiri Pandits or Muslims who are dealing with cancer treatment across the world or in the other parts of the country, they are top of the line people because they are very keen mentally. They are educated in the right sense and they do well. They are incisive. But our environment here needs to be a lot better.

I think one of the biggest things that we lack here is the role of private medical enterprises that government has never encouraged in the real sense. India has managed health care. Groups like Apollo, Fortis having multiple hospitals are managed health care. It started about 15 years back and is estimated that 85 percent of cancer care that will be provided in India will happen in the private medical sector. The government cannot do it alone. The major share has to be taken by the private medical sector. We haven’t encouraged it.

KL: There are two components to the infrastructure. One is the human resource and the other is the physical infrastructure? So what is the status?

SK: Technical infrastructure is completely lacking. We have a regional cancer centre at the SKIMS, which started in the last few years. They are doing a good job. They are grappling with numbers. Like you know we are now trying to get PET scan and I don’t know how that is going to get possible because of the life of 18F-FDG glucose (which is one hour between manufacture and use).Apart from that, the cancer treatment needs different kind of training in empathy. It is not only the doctors, the human infrastructure is also very haphazard.

The doctors are very good but the nursing needs to get a lot better. The technologists, for instance, radiation technologists, people doing biopsies, the ability to do immune histo-chemical diagnosis, finer aspects of oncology, tumour marker levels regularly and the answers coming back in time, those are lacking. So there is a deficiency of a trained manpower. There is a deficiency of technical infrastructure.

I think more importantly it is above time we do high-risk screening particularly for breast cancer in women. A lot of breast cancer in women and GI malignancies in the men. There should be regular screening here, preventive. Pick it up early. Diagnose pre-cancerous conditions than you will have some impact on the overall scenario.

KL: How many cases you handle in a week or a month.

SK: You know these are phases of life. When I started off, I would be dealing more with numbers. I am not sure the quality was adequate at that point in time. As you grow older you look at the same thing in a different way and more you go deeply into it, and for some of us particularly people like me, I don’t stay across the table as a professional giving advice and that is it.

I think more importantly it is above time we do high-risk screening particularly for breast cancer in women. A lot of breast cancer in women and GI malignancies in the men. There should be regular screening here, preventive. Pick it up early.

My role goes beyond that. I tend to get involved with the family, find out what the financial status is and try to give them advice on that and see socially how they can manage so. It is a little bit more than that as a human being so it starts taking more time. You worry about things like diet, and finances. So I think the quality of treatment that I give now has definitely become better and the quantity has had to decrease. I now regulate that. Initially, any number would do but the quality would suffer. On an average in a month, I must deal with about 50-60 new patients from this state, most of them coming for surgeries to outside.

For 27 years, I have been running an OPD here every month. On an average, an OPD has 110-120 patients. This continued except for months when I am abroad for a conference or for my out station clinic in Mauritius, Tajikistan and Democratic Republic of Congo in Africa.

Twenty-seven years and maybe a month missed in a year, about 100 average patients multiplied by a four people in a family, so I come across those many people who are affected primarily or secondarily by this disease and I have interacted with all of them. Most of them belong to rural areas of Kashmir and to a great extent I know what is happening in their lives.

Maybe that has been one of the reasons I felt that I should not stay only in the medical sphere. Maybe I can help politically as well. Just a few more questions asked and you know what is happening. When the road is already there between you and me, all I need, is to is widen the road, maybe larger good will come out of it.

But I have treated politics as a passion and as a hobby, and not my main profession. I still like what I am doing, oncology. It gives me a lot of satisfaction. The basic love that I have is for human development. You treat someone medically for cancer, get somebody a job in a friend’s company, enabling somebody in Bhaderwah to make a small hospital for his own people, it is all human development. There is no bigger joy than the satisfaction of being able to give something to others. Rest everything is a lie. It is the biggest kick you can get.

KL: But why do more people in Kashmir see politics more of cancer rather than as a cure?

SK: Like cancer, it is difficult to get politics out of your life because people as well as the place of Kashmir, are highly political. Politically, we are a highly sensitive people. Politics is in every Kashmir’s mind. It is a part of growing up. Politics of one form or the other is of interest to the Kashmiri so once it enters, it becomes part of you and it is difficult to get away. It is not something you can flirt with, it stays with you.

Number two, Kashmir being in political turmoil for the major portion of this century has added to that. It has become the central point of people’s lives.

Average people in a place like Mumbai don’t even know who their minister is. They don’t need to know because their lives go on smoothly without knowing anybody in the government. But in a conflict-ridden place like Kashmir, people naturally get drawn into it. There is very less number of people who are either not interested or not afflicted by the politics.

KL: In rise of Narendra Modi, do you see the emergence of a new India?

SK: He attempted something good. But unfortunately a lot of bad things happening as well. So it is incongruous. On one hand, I see the attempt to run the country like a dictator pretty much like Indra Gandhi did. The kind of politics in terms of the secular credentials, I see the country suffering in and that will create troubles. That will create more tensions within communities’ unless at some point of time, he rises up and puts it down with the iron hand. Assuming that he can actually do it keeping his political compulsion in view because these are the people who help them to get to power. Can he now override them and override all those political compulsions keeping his political future in mind and put that down with an iron hand? Will he be able to ever do it or will he ever want to do it? This is something that remains to be seen.

KL: Do you foresee Kashmir’s sufferings depreciating or appreciating?

SK: It is such a difficult question; I wish I had a clearer answer for you. The real answer is I don’t know. I hope that things slowly become better but for anything to happen here there has to be peace. So anything that contributes to peace in Kashmir will lead to betterment in people’s lives whether that will happen now or it will take much longer to happen is something that I am also waiting to find out. Unfortunately, I cannot give you a clear cut answer on that. I really hope that enough has happened now. I think it is time for peace to come into people’s lives and I think people around us who will contribute to peace, be it Pakistan, be the rest of the country, Indian leadership and people here in the state, the mainstream parties, I think the overriding need for peace for our people has to be supreme.

KL: Apart from the patients you treat, the families you tackle, what makes you so frequent visitor to Srinagar?

SK: I am a resident. I have always lived at two places, Kashmir and wherever else :Delhi, Mumbai, and London. Kashmir was one place I continued to live all the time. Unlike the people who like place only, I love this place, its culture and its people. When I talk about the ills of my people around, I include myself in that discourse. DNA doesn’t change. It takes a long time for DNA to change. If you read what Francois Bernier wrote in 1650, and if you then read what Tyndall Biscoe wrote about us in more contemporary times and if you see about how I find myself now, I don’t find a lot of change.

KL: Why don’t you permanently create your base here? Is Kashmir so small for you?

SK: I believe in learning continuously. I like to travel and I travel a lot. I tell my children also that you learn from the books but that is incomplete. You need to travel because traveling teaches so much about the people, communities, attitudes, food habits, so it is a great learning. So I like to travel.

Unfortunately all these years, in oncology at the level that I rose with God’s grace and I need to be in and maintain a lot of infrastructures, Kashmir does not have. I hope it comes off in future. In some way, I contribute to it, whichever way I can. But I never stopped living here. I am always here, all the time. I feel like you, I have the same ideas much to the displeasure of a lot of people outside where I live in Delhi but I continue to espouse the cause because I seem to feel like you do. But yes to some extent, one needs to imbibe from other communities and rest of the larger world also. There is a need to imbibe from outside, there is a need to retain what is good within your own system and ultimately life is about compromises. And the mixture goes wrong for some and it goes right for some of us.

KL: Is there the possibility of Dr Sameer Koul laying first stone for the private infrastructure, he keenly talked about it?

SK: To be very frank with you, one of the reasons I fell into Mufti Sahab’s trap was that I felt that at some point of time I will have a role in creating the medical infrastructure, which others around in this country will follow. I am happy that it happened because I learned a lot from my relationship with him for four years. He was a nice man, a very wise, very shrewd and very well meaning man. I wanted a real public-private participation model in health care in Kashmir and I thought I was fortunate enough to have travelled far and wide and imbibed a healthcare in Switzerland, Europe, America and therefore to come to a healthcare system which would be appropriate to our land and our people, I thought I would have more chances of arriving at that and I think I fell for Mufti sahab’s enticements. But unfortunately as things happen in politics, the way it ended for him, the compromises he had have to make and finally, it didn’t happen and therefore I very humbly hedged out of the thing because I couldn’t see myself transferring people and doing things. I thought I was not meant for that and I got out of the system. Now with my other relationship with Farooq Sahab (Dr Farooq Abdullah). He is a friend as well and a different kind of a great man. He is great in his own way. Very human person but a politician nevertheless. Let us see if I have a better luck with him.

KL: On migration of Kashmiri Pandits, do you see the interventions at different levels are getting them back?

SK: Not at all. One of the things that have kept me dismayed in this respect for a long time now is the state of my community, the political state, the economic state and that comprehension and the kind of reactive nature after the exodus, the Kashmiri Pandits took. They reacted to the exodus by getting out of one lap into the other one, which I thought was not in order. When you look at things you need to look at them comprehensively, you need to rise up above the ordinary and have an overview and see what needs to happen. To be very frank with you, my idol in Kashmir as a Kashmiri Pandit leader was Ram Chand Kak. I have asked this question to no one less than Geelani Sahib, not once but many times. I said that isn’t it the same Kashmiri Muslims who paraded Kak with chains around his hands through Hari Singh High Street and threw oil and shit on top of him, to a person who gave the most honest advice to his king, to have a bilateral standstill agreement to both its important neighbours and be friendly to both. It took us so many years and so many peoples blood to realise what he said in one sentence. He (Geelani) obviously put blame on Sheikh Abdullah and Nehru and said that it was the connivance between two of them and because they had a relationship with each other and for the mutual benefit they did what they did. And he also felt sad about it.

The truth remains. It doesn’t change history. That gentleman as honest Prime Minister overrode his personal religion. To give that kind of advice, it requires integrity, elevation. Unfortunately, when Pandit Nehru was invited by Kashmiri Pandits to address the Yuwak Sabha at the Sheetal Nath temple, which used to be the focus of Kashmiri Panditactivity, then, he brought Sheikh Abdullah along with him. The Kashmiri Pandits got upset and he said I know I was invited to address you but I have brought him along to make you understand that if you have to live in this land without problems for rest of your life then you have to live with them. They should be your party. You should politically support them, be with them.

Somehow I think Kashmiri Pandits were never able to do it. I am of the belief that conversion of Muslim Conference into National to people like Jiya Lal Kelam, Pandit Prem Nath Bazaz. Even, they also drew apart, later. When you have clap there are two hands responsible. There must have been reasons for them to do so. But in those days there were some Kashmiri Pandits who were more politically mature than the kind of Kashmiri Pandits leaders we have had thereafter. I am not painting everybody with the same brush. There were people like Pyare Lal Handoo who understood more. But most of the Kashmiri Pandit leadership of today is temple committee leaders basically. They never rose beyond that level.

Unfortunately, me, my community and even Muslims to a large extent have played the reactive politics – reacting to situations and happenings. That is not what political ideology is all about.

So the question whether they are coming back, I wish if there are more people like me, it would stand a better chance of happening. In fact, at the moment they are not listening. When I talk to them, they don’t even like me, most of them.

They are very reactive to me and call me names like Samad Khan but the fact is that I am sure when they in their cooler times sit and think amongst themselves and when they are on their own, they understand what I am telling is the right. I am not saying I am the only one, there are many Kashmiri Pandits who think like me but there have to be many more.

What I felt for a long time, there should have been a truth and reconciliation commission between the two communities where they would trade charges, tell each other their apprehensions and their misgivings and clear them at some point of time or start a process of clearing them. I hope that in future with the conflict level going down, it may happen.

But yes I am depreciative of people getting on national television and cursing at each other. I am not in favour of that. I think they are doing a great disservice to their communities.

(Excerpts of this long interview were published as cover story of the magazine last week)