Silenced to death

The media and the government keep mum on pollution-cancer linkages and the abysmal medical help available in India against the menace

By Anil Agarwal
Published: Tuesday 31 October 2000

-- (Credit: Pradip Saha / CSE) 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 myself from another form of blood cancer called lymphoma -- three times in just six years, 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. 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. The ministry of health has been acting like an ostrich, refusing even to acknowledge the seriousness of the problem. But the young minister's death provided an excellent peg for substantive reports on this major public health problem. How could the media have missed such an opportunity?

Kumaramangalam did not die because the private sector Apollo Hospital misdiagnosed him and the "prestigious" All India Institute of Medical Sciences ( aiims ) failed to deal with him. He died because cancer treatment is extremely poor in this country. Ironically, cancer is a great leveller -- even important people do not escape it. Except, of course, ordinary people do not get a bevy of doctors flitting around them. For a poor person a diagnosis of cancer is the equivalent of death. According to Vinod Raina, an oncologist at aiims , only about 30 per cent of the patients diagnosed with cancer undergo treatment because of the high costs and many drop out halfway having run out of money. The average cost of treatment of cancer can be about Rs 2-3 lakh, and that, when there are no major complications. Parliament was recently told the government has spent Rs 6 crore on the treatment of former prime minister, V P Singh.

However, cancer treatment is improving in the us , survival rates for many types of cancers is now higher than 50 per cent. Unfortunately, the cost of treatment has also risen. For example, an infusion of monoclonal antibodies or a bone marrow transplant, recommended for various cancers, greatly increases the chances of success. Monoclonal antibodies can specifically target cancer cells but one infusion can cost as much as Rs one lakh. A patient may require several.

So, what do we do in India? First, we have to take the preventive route, We have far too many poor 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 -- educating people towards better diets and improved lifestyles. For instance, awareness of the risks of smoking has cut lung cancer rates dramatically in the us . But, in India, there is little health education; fruits, vegetables and dairy products are contaminated with pesticides; and, pollution of air, water and soil is increasing by leaps and bounds. The government does not collect cancer data properly or regularly and disseminate it. Considered a secret by the government, we had to ferret it out.

The latest data on cancer incidence dates back to 1991, collected only from hospitals in five metros and one rural segment. 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 100,000 people) but at the lifetime incidence rate, because cancer is more or less fatal, 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 for men and one out of 18-20 for women. But the data for the worst city, Delhi, is one out of 13-14 men and one out of 9-10 for women. Next worse is Chennai. In other words, cities are more cancer-prone than rural areas. In the early 1990s, we could have expected one out of 10-15 urban Indians to get cancer in their lifetime. When compared to western countries that have a lifetime incidence of one out of four-six persons, the Indian data looks good. But not to worry, we are catching up. Government's data relies on information only from hospitals, which makes it inadequate and probably is an underestimate.

My personal experience says that a city like Delhi is probably already matching the western world. In 20 years, 35 members on the board of the Centre for Science and Environment ( cse ), an environmental non-governmental organisation, which I head, have come from Delhi. Of these, six have had cancer. Three have passed away. 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, in the case of blood cancers it is higher among men. The average incidence of blood cancers among 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. Of the six directors of cse who have suffered cancer, exactly half have had blood cancers of which two were diagnosed while in their forties. Like "young" Kumaramangalam, two of the three suffering cse directors have passed away.

I am the only one alive. I had a rare lymphoma in my eyes, brain and the spinal cord. In the early 1990s not even 200 recorded cases of the specific ailment existed. Not one doctor in India -- and I sought help from the best of the best -- could even diagnose the disease. I survived thanks to medical researchers in the us who were developing 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. V P Singh and P R Kumaramangalam are just the more well-known victims. Second, the cancer treatment is still very poor in India.

Try finding a study by India's medical community on the high incidence in Delhi. You will come up with a blank. Is it because of the high levels of benzene in Delhi's air, known to cause leukaemias? Or is it because people living in Delhi are exposed to high levels of pesticides in their food? Many pesticides can not only cause cancer themselves but also act as immunosuppressants, which means they turn down the body's inherent ability to fight cancer. 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 think the government would have done a lot to take appropriate action. But that is assuming too much.

While giving priority to preventive action, the government must also simultaneously undertake measures to improve facilities for cancer treatment. My own experience with the public sector aiims was absolutely appalling. I wasn't aware but cancer cells were accumulating in front of the left eye retina. All I could see were black lines that slowly increased to leave me blind in the left eye. I panicked. Earlier, eye doctors had told me many people see "floaters" in their eyes due to ageing, nothing worrisome. Obviously, this was something different, I did not want to go blind. Running from one opthalmologist to another, I got nowhere. The professor specialising in retinal diseases at aiims was the most remarkable, admitting he had never seen anything like it. However, he hypothesised. For some unknown reason, the gel between the lens and the retina was becoming opaque. Why was it not happening in my right eye? He could not answer. I asked, "Should I seek help abroad?" His answer: "No. What do they know more than us? Just put trust in God. Everything will soon be fine." Trusting him, had I stopped my search, I would really have been fine. And dead. Within a few months.

The National Cancer Institute in Washington, D C found, in addition to the scary black lines in my eye, a tumour in the centre of my brain, which was not surgically removable, and involvement of the spinal cord in the problem. Will C P Thakur, health minister, therefore, institute an enquiry against aiims and dismiss the doctors? If he did, he would find that besides the lack of professionalism in the doctors, the politicians are to blame. They treat the institute as their private ward. If aiims is a poor scientific institution, it is because of too much meddling in its affairs. If the private sector Apollo was bad for Kumaramangalam, be rest assured, the 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 you persist till you get a diagnosis that is satisfactory. In the modern world, you have no idea what has hit you and if its 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 a disease you will survive only if the doctor 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 cause death as well.

But all this advice is useful 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 designed for high-cost diseases, such as cancer, with a lifetime incidence ranging from one out of every 10 people to as high as one out of every three to five very soon. A medical professional tells me companies in the West have privately projected such incidence levels for India to plan their operations here. And I am convinced they are much more accurate with the figures than our government.

I cannot forget the face of a poor villager I met along with a cancer doctor in aiims soon after my own treatment in the us . had come to an end. He was being told by the doctor how he had to get admitted the next day and just could not go back home. 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 of what had hit him. He had no clue what cancer was all about. Unable to stand the discussion, I ran away from the place. I do not know what happened to him. But, for once, I hated being a privileged Indian swimming 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 government's incompetence in matters of environmental health?' C P Thakur, the health minister, an eminent physician himself, 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?

Tha author is director of the Centre for Science and Environment, New Delhi

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