A conspiracy of silence

When a minister died of a much dreaded illness recently, an opportunity was missed to highlight a major health problem which affects millions of people every year. The establishment failed, says ANIL AGARWAL, refusing even to acknowledge the seriousness of the issue. As a survivor of a rare form of leukaemia and as a noted environmentalist, he details the trauma of dealing with an abysmal lack of professionalism in the medical and health education systems, and the menace of pollution as a carcinogen.

I AM not just angry but livid with the political system and the media. Our "capable" politicians did some public breast beating on young Kumaramangalam's untimely death and the media reported this ritual without any thought.

The Minister had a form of blood cancer called leukaemia. Having suffered from another form of blood cancer called lymphoma - three times in just six years, and thanks to God I am still alive, having achieved some kind of record, I guess - I have some idea of what it takes to deal with cancer and, as an environmentalist, I have a deep interest in the role of pollution, lifestyles and diet in its causation. But there was not one substantive political statement or media report on how to deal with this horrifying disease on which there is nothing but a conspiracy of silence from the Government. Unable to deal with traditional diseases like diarrhoea and malaria, the Ministry of Health has been acting like an ostrich, refusing even to acknowledge the seriousness of the problem. But when a young minister dies, for the media, he provides an excellent peg for substantive reports on a major public health problem, which today affects more than a million new people every year. How could the media have missed such an opportunity?

Kumaramangalam died of leukaemia not because the private sector Apollo Hospital misdiagnosed him and the "prestigious" All India Institute of Medical Sciences (AIIMS) failed to deal with him, but because cancer treatment is extremely poor in this country even as pollution in cities like Delhi is making people more susceptible to the disease. What is great is that cancer is a great leveller, and even important people do not escape it except, of course, ordinary people who do not get a bevy of doctors flitting around them. For a poor person, the very diagnosis of cancer is equal to death. According to Dr. Vinod Raina of AIIMS, only about 30 per cent of the patients diagnosed with cancer undergo treatment because of the cost and many drop out halfway having run out of money. The average cost of treatment of cancer can be some Rs. 2-3 lakhs and that is when there are no major complications. Parliament was told recently that the Government has spent Rs. 6 crores on the treatment of former Prime Minister, Mr. V.P. Singh.

Cancer treatment is becoming better - in the United States, survival rates for many cancers is now higher than 50 per cent - but, unfortunately, the cost of treatment is also going up. For example, an infusion of monoclonal antibodies or a bone marrow transplant is now recommended for various cancers, which greatly increases the chances of success. Monoclonal antibodies, for instance, can specifically target cancer cells but one infusion can cost as much as Rs. one lakh and a patient may have to take several.

So what do we do in India? First, we have to take the preventive route, especially because we have far too many poor people who cannot afford treatment. Unless, of course, our politicians do not mind poor people dying despite all their pro-poor rhetoric. This means controlling pollution - a gigantic task for the Government - and educating people to have better diets and improve their lifestyles. For instance, awareness of the risks of smoking has cut lung cancer rates dramatically in the U.S.. But, in India, there is very little health education; fruits, vegetables and dairy products are full of pesticides; and, pollution of air, water and soil is growing by leaps and bounds. The Government does not even collect cancer data properly or regularly and make it known to the public. Considered to be a secret by the Government, we had to ferret out the data with the help of a doctor.

The latest data on cancer incidence is available for 1991 only and that too only from hospitals in five metros and one rural area. But even the data available is very worrying. The best way to understand the impact of cancer is not to look at the annual incidence rate (which is about 150 per 1,00,000 people) but at the lifetime incidence rate, because cancer is more or less a fatal disease. You normally are not lucky enough to get it more than once. The rural data shows a lifetime incidence of one out of 34-36 men and one out of 18-20 women get cancer. But the urban data for the worst city - Delhi - is one out of 13-14 men and one out of nine-10 women followed closely by Chennai. In other words, cities are more cancer-prone than rural areas and that in the early 1990s, we could have expected one out of 10-15 urban Indians to get cancer in their lifetime - that is, every second or third family would have to face a health emergency at some time or the other. When compared to Western countries which have a lifetime incidence of one out of four-six persons, the Indian data looks good, but do not worry, we are catching up with them. The Government's data relies only on hospital data which makes it inadequate and probably an underestimate.

My personal experience shows that a city like Delhi is probably already matching the Western world. The Centre for Science and Environment (CSE), an environmental NGO which I head, has had 35 members on its board of directors coming from Delhi in the last 20 years of its existence. Of these 35, six have had cancer and three are already dead, which gives a lifetime incidence rate as high as one out of six: the prevailing situation in the West.

The situation with respect to blood cancers like lymphomas and leukaemias is worse in Delhi. Though the overall cancer incidence is higher in women, it is higher in men in the case of blood cancers. The average incidence of blood cancers in men of Delhi is about four times more than in the rural areas for which data is available, twice that in Bhopal, and nearly 50 per cent more than in Chennai, Mumbai and Bangalore. Even in the case of women, Delhi tops the list leaving the other cities way behind. Of the six directors of CSE who have had cancer, exactly half have had blood cancers of which two were diagnosed while in their forties. "Young" Kumaramangalam getting leukaemia in his forties will only surprise our politicians. And like Kumaramangalam, of the three CSE directors who had the misfortune to suffer from blood cancers, two have already passed away.

I am the only one alive even though I had such a rare lymphoma - in my eyes, brain and the spinal cord - that there were in the early 1990s not even 200 medically recorded cases of this specific version of the disease. Not one doctor in India - and I sought help from the best of the best - could even diagnose the disease. I survived only because I was able to find medical researchers in the U.S. who were trying to develop a treatment for such a rare disease. Isn't it amazing that there are scientists in this world who are trying to find answers to medical problems that have not even affected 200 people even while our own boffins are still struggling with diseases that affect millions! But tell that to our science braggarts who want to send a man to the moon to "prove" India's third-rate prowess in science.

So what does this tell us? First, that Delhi is a hotbed of blood cancers. Mr. V.P. Singh and P.R. Kumaramangalam are just the more well-known victims. Second, that cancer treatment is still very poor in India.

But, despite these facts, try looking for a study by India's medical community trying to find out why Delhi is so bad for blood cancer, so that preventive action could be taken. You will come up with a blank even though there could be reasons galore. One is just forced to wonder all the time. Is it because of the high levels of benzene in Delhi's air - partly because of the high benzene and aromatic content in our government-produced petrol and partly because of the large numbers of two-stroke two- wheelers which run without catalytic convertors? Benzene is known to cause leukaemias. Or is it because people living in Delhi are exposed to high levels of pesticides in their food? Studies have shown that people in Delhi had extremely high levels of DDT in their body fat about a decade ago, which shows that they are exposed to pesticides in mysterious ways. Many pesticides can not only cause cancer themselves but also act as immunosuppressants which means they turn down the body's own ability to fight cancer.

Unless we pin down the cause we cannot take preventive action. A close look at data available from 1982 to 1991 also shows that blood cancers are increasing at a much faster rate than the overall cancer incidence in Indian metros. One would have thought that if this is what available data tells us - howsoever poor it may be - the Government would have done a lot to take appropriate action. But you are assuming too much.

The table shows that the incidence of blood cancers is much higher in Delhi than in other metros of India both for men and women.

While giving priority to preventive action, the Government must also simultaneously undertake measures to improve facilities for cancer treatment. Because Apollo is a private hospital, the media and the politicians have ranted and raved against its so-called "misdiagnosis" of Kumaramangalam. But my own experience with the public sector AIIMS was absolutely appalling. Cancer cells were accumulating in my left eye in front of the retina. I had no idea they were cancer cells. All I could see were black lines which slowly became so many that I could not see from the eye. When I started seeing a thin line in my right eye, I panicked. Earlier, eye doctors had told me that many people see "floaters" in their eyes when they grow old and this was nothing to worry about. But, obviously, this was something different and I did not want to go blind. I went from one opthalmologist to another, getting almost nowhere. The professor specialising in retinal diseases at AIIMS was the most remarkable. He admitted he had never seen anything like it. He, however, had a hypothesis. For some unknown reason, the gel between the lens and the retina was becoming opaque. But why was it now happening in my right eye? He could not answer me. So I asked: "As I do not want to go blind, should I try seeking help abroad?" His answer was one that only Indian professionals are capable of. "No. What do they know more than us? Just trust in God. Everything will be fine soon." If I had listened to him and stopped my search, everything would have indeed been fine. I would have found the ultimate resolution for peace and contentment - dead within a few months.

Two weeks later, the doctors at the U.S. Government's "truly prestigious" research centre near Washington, the National Cancer Institute, found a tumour in the centre of my brain - therefore, it could not be surgically removed - and involvement of the spinal cord in addition to the scary black lines in my eyes. Will C. P. Thakur, Health Minister, therefore, institute an enquiry against AIIMS and dismiss the doctors who survive on taxpayers' money? Sadly, he will find that together with the lack of professionalism in the doctors there, it is the politicians in Delhi who are to blame. These people treat the institute as their private ward. If AIIMS today is a poor scientific institution, it is only because of too much meddling in its affairs by them. So if the private sector Apollo was bad for Kumaramangalam, then be rest assured that public sector AIIMS will be even worse for the ordinary person.

That apart, the big lesson is that if you have a problem, make sure that you persist till you get a diagnosis that satisfies you. In the modern world, you have no idea what has hit you and in the case of cancer, it can take months to get diagnosed. Do not be a Kumaramangalam who let his fever go on and on. Continue with your work even if it means editing books from your hospital bed - cancer does not affect you till it has gone out of hand - but also keep getting all your tests done. But, ultimately, remember cancer is such a disease that you will survive it only if you find a doctor who takes a personal interest in you. And that will all depend on how people respond to you. The treatment itself can sometimes be more horrific than the disease and the doctor has to take great pains to deal with the side-effects of the treatment which can kill you as well.

But all this advice is useful only if you happen to have money. Or, like ministers, have access to taxpayers money. For others, the poor and ordinary middle class people, the Government and insurance companies must come up with an insurance scheme specifically for high-cost diseases for cancer which have a lifetime incidence of one out of every 10 people going up to one out of every three to five very soon. A medical professional tells me that Western companies have privately projected this incidence for India to plan their operations here. And I am convinced they are going to be more right than our government establishment.

I cannot forget the face of a poor villager I met with a cancer doctor in AIIMS soon after my own treatment in the U.S. had come to an end. She was telling him that he had to get admitted the next day. He just could not go back home. But the man kept on pleading. "Madam, I just came for a check-up. I have no relative here to take care of me. I had no idea that I would have to undertake treatment in Delhi. And I have no money." The man had no idea what had hit him. He had no idea what cancer was all about. I could not stand the discussion and ran away from the place. I do not know what happened to him. But, for once, I hated being an Indian - a privileged person in a sea of appalling poverty, illiteracy and bombastic rhetoric.

The question we all need to ask ourselves is: Did Kumaramangalam die because of the professional incompetence of Apollo and AIIMS doctors or because of the incompetence of the Government especially in matters of environmental health? Dr. C. P. Thakur, Health Minister, an eminent physician, has said that he would not be averse to cancelling the registration of the Apollo Hospital, if found guilty, I would like to know from him how citizens like me can get the registration of the Health Ministry revoked?

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