Agony of the waiting

There is a strange calmness in the oncology department of government hospitals though it is more crowded that most other sections. Everybody waits. Patiently. The cancer patients have a look of forbearance. Under pale skin, bodily deformities and a range of mixed emotions, there is a marked effort to cope with suffering and hide it from public eye. Attendants look helpless. The physicians seem a little more tolerant than in other departments, a little more sensitive. It is as if everyone has learned to wait under the influence of some strange, overbearing force

 
Last Updated: Sunday 07 June 2015 | 21:11:47 PM

Agony of the waiting

-- Government hospitals in India have a reputation for being noisy places. But there is a noticeable difference if you reach the oncology department. Even if it is more crowded than most other sections, you can sense a strange calm in the Institute Rotary Cancer Hospital of the All India Institute of Medical Sciences ( aiims ), New Delhi.

Everybody waits. Patiently . The cancer patients have a look of forbearance. Under pale skin, bodily deformities and a range of mixed emotions, there is a marked effort to cope with suffering and hide it from public eye. Attendants look helpless. The physicians seem a little more tolerant than in other departments, a little more sensitive. It is as if everyone has learned to wait under the influence of some strange, overbearing force.

This is the burden of cancer. And it shows clearly on the face of Meera Singh Deo, 20. Her sister Savita, 22, had a brain tumour that was surgically removed. She is now undergoing chemotherapy. In the half hour that Meera spent with Down To Earth in the corridors of aiims , she did not once allude to her sibling by her name or as didi , the common denomination for sister. The young woman from Riding village in Singhbhum district of Bihar, bordering on Orissa, constantly referred to her as the "patient". Inside the adjoining room, physicians were injecting potent but measured poisons into Savita's body, hoping to kill the cancer cells.

Even to somebody meeting her for the first time, the impersonal, studied quality of her diction and clinical descriptions seemed unusual for her age. She seemed to have picked up a range of new terms, redefined old meanings and matured quite rapidly. The treatment has been on for the past one year. This is her eighth trip to Delhi with her sister.

After being quizzed repeatedly, the youngest among four siblings reluctantly explained that none of them has got married. Everyone is waiting for Savita to get well -- and no one can say how long that may take. Whether she does get well or no, there will be hardly enough money left for a decent wedding for any of them. Already, this family has incurred expenses of Rs 2,50,000 on treatment. A lot of it has come through loans from friends and family. While the source of income is the same four hectares of land, life will never be the same again.

Yet this family is quite fortunate, if you take the case of Amarnath Tiwari, 29.

On hope, water and Horlicks
His father owns one bigha of land in Kumna village of Chappra district, Bihar, which yields very little. The family earns a living by working in neighbouring fields for foodgrain. In his early teens, faced with an inevitability that innumerable teenagers of Bihar learn to live with, Tiwari began taking the train to Delhi every off-season. He became a porter in the crowded Naya Bazaar area of Delhi's Walled City. The eldest among seven siblings, his parents got him married. He has three daughters now.

In 1992, following all sorts medication in the past five years for hiccups that won't go away, he started having dizzy spells. Weight loss followed. He saw a physician, who instructed him to go to Safdarjung Hospital. From there, he got referred to aiims . The diagnosis was chronic myeloid leukaemia, a blood cancer. Tiwari has no clue that blood cancers are linked, among other things, with polluted air, particularly benzene, which is present in liberal quantities in Delhi's air (see pp 41-47: Environmental injustice ).

That was the beginning. After eight years of chemotherapy peppered with radiotherapy, the only work that he seems likely to find today is that of a scarecrow in the farms of his village. His small eyes are gorged into deep sockets cradled between thin eyebrows, high cheekbones and dark circles; their colour is the most unnerving shade of pink-yellow. The man does not have any inhibitions and comes across as a frank, straightforward narrator. "Whenever an employer would find out about the disease, he'd sack me. I always tried to hide it from them, but it meant that they would expect me to do heavy work. For Rs 1,200 per month, I used to toil for 12 hours a day. Now I have stopped coming here for work. I try to find light labour in my village, and on good days, I earn Rs 50."

He remembers physicians telling him that he should live in hygienic surroundings. Tiwari comes to Delhi every month to receive chemotherapy. He stays in a 2.5 sq metre shanty rented by a relative in Dabri on the western outskirts of the city. When he gets lonely, he's got mosquitoes for company -- a barely two metres away from the room flows a large sewage drain, as testified by strong wafts of fetid air. He pays his relative Rs 800 per month, according to the number of days he has to stay. On days when he has to go to aiims for a check-up or medication, he gets up early and leaves home by six in the morning on an empty stomach. Cooking is impossible when two people sleep; it is either the bedding or the stove. He has to change up to three buses. The one and a half hour journey costs him Rs 18 one way. In the afternoon, he looks for the cheapest meal available around aiims . It usually costs about Rs 10. It's not what the doctor ordered, but it keeps body and soul together.

His monthly expense on medicine is around Rs 2,000. He has already run a debt of a few thousand rupees, and he cannot recall the exact figure. Tiwari could not have been treated but for a grant of Rs 20,000 from the Prime Minister's Relief Fund that the physicians at aiims arranged for him. He can buy medicines and get the bills reimbursed. He can also buy diet supplements like Bournvita and Horlicks. But the relief money does not cover food expenses. His physician has told him that a nourishing diet is essential for his condition to improve.

Tiwari has reached an unresponsive stage of the disease, and the physician gives him about six months. Tiwari dissolves a couple of teaspoons of Horlicks in lukewarm water. Milk is out of reach.

Cancer support groups
With so many poor patients reporting with cancer, one would expect that there would be quite a few patient support groups in Delhi. Not quite, says Manju Dar of the Cancer Patient Aid Association, which helps poor patients in Mumbai, Bangalore, Delhi and Pune by providing free medicines, among other things. "It is very difficult to generate funds for this sort of work in Delhi, unlike Mumbai, where people do come up with money to help cancer patients."

She has a schedule of distributing medicines at three cancer hospitals in Delhi, and if you reach around that time, you will see the number of people waiting for her. But nothing is enough. Down To Earth met several poor patients in both aiims and Safdarjung Hospital who did not know about any way to get free medicines.

Some oncologists, though appreciative of the work of support groups, point out that their effort is largely wasted as the patients cannot take care of the post-treatment requirements, even if they get the medicines. Once a cancer patient, always a cancer patient, they point out. Because apart from the lengthy treatment, the patient has to return for regular check-ups and tests, and there is always the danger of recurrence (see box: Financial drain ).

Physicians mention patients who simply drop out because of treatment fatigue and because they just cannot handle the financial and emotional pressure. These cases just fade away, and are difficult to trace even for the people who treat them.

Jitendra Tuli, communications consultant with the World Health Organisation in New Delhi, is a cancer survivor and the founder of Cancer Sahyog, a support group. He cites examples of extremely poor patients who were deserted by their near and dear ones or those who walk out of their families rather than put them through the nightmare of cancer treatment. "One indicator of how poor people fare with cancer is to check the number of cancer survivors around you. I know quite a few cancer survivors, but hardly any of them are poor people. You can look around and see for yourself."

One place that should be seen is Shanti Avedna Ashram near aiims . A refuge for poor people in terminal stage of cancer, it is run by Christian nuns. The idea is to give them dignity and comfort in their last days. Patients sheltered here have numerous stories of desperation, abandonment by family and dire financial situations. Yet you will also come across cases of families that are not extremely poor but still cannot afford treatment.

An oncologist at the Apollo Hospital, New Delhi, who has handled quite a few paediatric cancer cases, says if the parents of the child are poor, they face a very tough decision. They realise that if they put in everything they have into the treatment of one child, there would probably be nothing left for the rest of the family. And they cannot even be sure if the child will survive. There was a case of a child with leukaemia who died due because the parents could not provide the treatment in time. There are also examples of families have staked out everything to save a child. An oncologist at aiims , when questioned about the limitations of working in a government hospital and the chances of getting a job elsewhere, says she can't even think about making money out of oncology.

In the corridors of aiims stands Omprakash from Chappra, Bihar. He is Delhi for his 17 year old brother's treatment. A relative consoles him, asking him to repose his trust in god. Omprakash can't take it. He flares up: "If there was a god, why would he give a disease like this to poor people like us."

Environmental injustice

Killer with a BIAS

cancer is not an 'equal opportunity killer'. Samuel Broder, director of the us National Cancer Institute, says, "Poverty is a carcinogen." That the living conditions of the industrial poor put them at a greater risk of several diseases has been known since the days of Charles Dickens' novels. Writing in the British Medical Journal in 1902, W J Sinclair, an obstetrician, remarked that cervical cancer was a disease occurring "almost exclusively among the poor, the chronically overworked and underfed, among women, poor, prolific, harassed, worried... reposeless." Since that time, numerous reports from different countries have confirmed that economically disadvantaged groups in society are at increased risk of cancer.

Among individual types of cancer associated most consistently with low socioeconomic status are cancers of the lung, cervix and stomach, observed Lorenzo Tomatis, former director of the International Agency for Research on Cancer ( iarc ) in Lyon, France, which is within the framework of the World Health Organisation. Tomatis' 1992 editorial in the journal Cancer Epidemiology, Biomarkers and Prevention drew attention to the relationship between poverty and cancer risk, not only in developing countries but also in industrialised countries, where higher cancer risks and lower socioeconomic class go hand in hand.

In an article that dealt with poor children being subjected to environmental injustice, the Journal of American Medical Association , in its June 21, 2000 issue, touched upon a subject that is severely neglected. Philip Landrigan, head of the department of community and preventive medicine at Mount Sinai School of Medicine in New York City, was quoted as saying that a number of toxins, such as lead, polychlorinated biphenyls ( pcb s) and organophosphate pesticides, are disproportionately concentrated in environments where disadvantaged children live. "As it turns out, many of the children who are most heavily exposed in our society to environmental toxins are the same children who are poor, the same children who have either no access or inadequate access to medical care," said Landrigan, who called this phenomenon 'environmental injustice'.

In cases where poverty is not necessarily associated with increased incidence of cancer, it has been shown repeatedly to be related to poorer survival rate. For example, a 1991 paper entitled 'Socioeconomic factors and cancer incidence among blacks and whites', published in the Journal of National Cancer Institute , showed that affluent women have a higher incidence of breast cancer. But a 1992 paper entitled 'Socioeconomic factors and race in breast cancer recurrence and survival', published in the American Journal of Epidemiology , showed that affluent women have better chances of survival from the disease as compared to poor women.

Today's Plague

-- T he six cancer registries in India fail to give the true picture of cancer incidence as several cases go unreported. Vinod Raina, additional professor of medical oncology at aiims , recently stated in a television programme that 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. Yet, whatever indicators are available do not present an encouraging picture (see graph: Cancer in Delhi ).

Randip Guleria, assistant professor of pulmonary medicine at aiims who participates in a weekly lung cancer clinic, says, "My impression is that there has been an abnormal increase in certain cancers in Delhi, and cancers of blood and lung are two of these. And the problem is only growing, because cancer takes a lot of time to develop, a lot of exposure to toxins. The pollution that we cause today comes back as cancer 10-20 years hence."

Data projections by the National Cancer Registry Programme of the Indian Council of Medical research show that cancer of the cervix would be the most common cancer in India by July 2001, accounting for more than 12 per cent of all cases. In Delhi, lung cancer is the commonest among men. Blood cancers are also a greater problem in the capital as compared to the other registries. A comparison of blood cancer rates in the late 1980s shows Delhi records the highest rate of occurrence of blood cancers among the six registries in India (see graph: Blood cancers: Delhi's bane ).

What are the reasons for these alarming trends? The causes of cancer are too diverse -- from lifestyle to genetic makeup. Several physicians say better health awareness among the masses is responsible for a greater number of cases being reported, and that rise is proportionate to the increasing population. But this does not explain the entire picture. For example, while cancer is an ageing-related disease, how can childhood cancers be explained? In the us , for example, cancer is the leading cause of disease-related death among children and childhood cancer rates are increasing at 10 per cent every year, according to a 1998 report entitled 'Childhood cancer: a growing problem', published in the Environmental Health Perspectives . Improved diagnostics and better recording of cases are assumed to play a role in this, but "even taken together they cannot explain the magnitude of increases that have been observed," says Sheila Hoar Zahm, deputy chief of occupational epidemiology at the us National Cancer Institute.

In recent times, a lot of scientific support has come in for the view that cancer has more to do with environmental conditions than anything else, including genetic makeup (see 'Genes, dreams and reality', Down To Earth , Vol 9, No 6; August 15, 2000). " iarc reported a few years ago that more than 80-90 per cent of all cancers are related to the environment. Hence, there is no question that with the increase in pollution burden in our environment there will be an increase in the incidence of cancer," says P K Ray, immunotoxicologist and director of the Bose Institute of Calcutta. "Benzene is bad for health and is known to cause certain cancers like those of the bladder and blood. It is toxic to bone marrow and the urinary bladder," says Raina. Benzene is an established human carcinogen, and its levels are amazingly high in the ambient air of cities like Delhi (see graph: Delhi's shockingly high... ). H B Mathur, professor emeritus at the Delhi College of Engineering, and expert on engine technology and a fellow at the Centre for Science and Environment, says when Delhi started using unleaded petrol, nobody gave a thought to the number of vehicles that do not have catalytic converters. "Today, over 90 per cent of the capital's vehicle fleet has no catalytic converter. This causes major emissions of benzene from the exhaust pipes," he says.

Battered Lungs

-- W hile lung cancer's link with smoking has been publicised, its link with air pollution is considerably underplayed. "Data do suggest that urban smokers are more likely to develop lung cancer than rural smokers, even after accounting for smoking behaviour (how heavily a person smokes, what kind of cigarettes are smoked and so on). Yet urban non-smokers do not appear to be at increased risk for lung cancer," said Dimitrios Trichopoulos and colleagues at the Harvard Centre for Cancer Prevention in Boston, usa , in a September 1996 article in the Scientific American .

"Taken together, such studies, emission inventories and chemical analyses of air samples from urban areas suggest that long-term exposure to high levels of air pollution could increase lung cancer risk by about 50 percent, especially among smokers. Diesel exhaust, which is probably more carcinogenic than non-diesel exhaust, has been proposed as a likely carcinogenic factor," they conclude. It is well known that Indian cities use a lot of diesel, and only one pollutant, suspended particulate matter, which is linked to diesel exhaust emissions, accounted for 52,000 lives in only 36 cities of India in 1995 (see 'Fatal attraction'; Down To Earth , Vol 8, No 1; May 31, 1999).

Tanja Pless-Mulloli from the department of epidemiology and public health at the School of Health Sciences, University of Newcastle, uk , coauthored a study entitled 'Lung Cancer, Proximity to Industry, and Poverty in Northeast England', which was published in the April 1998 issue of the Environmental Health Perspectives . "The association between raised lung cancer mortality and proximity to industry in women under 75 years of age could not be explained by smoking, occupation, socioeconomic factors, or artefact. Our judgement is that the observed gradient in women points to a role for industrial air pollution," the authors explain.

Ashutosh Pathak, oncologist at aiims who specialises in lung cancer, points out that getting a diagnosis itself is a major hurdle for the poor. "More than half the lung cancer cases that come to me are first treated as tuberculosis as the symptoms of the two diseases are very similar. Of the cases that do come to us, 80 per cent are already in advanced stages," he says. "The number of cancer cases being reported in the six cancer registries in India represent barely the tip of the iceberg."

Time to reach for the panic button?
"Cancer ultimately is a human condition, and therefore cancer occurs under human circumstances. And those circumstances include the physical environment, the culture of the people themselves, the social and economic condition of people, political circumstances, and also psychological and spiritual concerns." Thus, Harold Freeman, director of the department of surgery at the Harlem Hospital Centre in New York, usa , chairperson of the President's Cancer Panel, and a leading authority on the interrelationships between race, poverty and cancer. "If cancer occurs under those conditions, then it's not enough to understand carcinogenesis, if we ever get to understand that -- we should understand it in human circumstances and settings. Poverty has to do with lack of resources, lack of knowledge, poor environment, exposure to toxins, and lack of access to health care."

In India, cancer receives as little importance as poverty. "In a developing country like India, we cannot even hope to provide decent cancer treatment to all victims. Hence, it makes sense to concentrate on prevention of cancer," says Vinod Kochupillai, chief of the Institute Rotary Cancer Hospital at aiims , New Delhi. Just like the poor of India who cannot look beyond their immediate needs, the country's medical establishment is immersed in dealing with communicable diseases like malaria and tuberculosis which take a high toll on human lives, and does not pay enough attention to non-communicable diseases like cancer.

"There is a general impression that cancer is incurable and money spent on its research is a waste. But non-communicable diseases like cancer and asthma are going to become more prevalent as we industrialise and we have to give as much attention to these as to communicable diseases," says Guleria. "There is no major effort from the policymakers to counter smoking or air pollution. It is indeed sad that we know so much about pollution-related problems and yet do so little about it. It is time for drastic measures now," says Guleria.

Drastic measures will surely not come unless more is known about the state of the disease in India. If icmr cares one bit for its reputation and does not want to bear the blame of criminal neglect, it should get moving with the ncrp . It has to move quickly on its feet and publish data, which can then be used to develop a better strategy to deal with cancer. Otherwise, the curse of the dying poor will weigh heavy on it.

With inputs by Leena Chakravarty and Vibha Varshney

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