© Springer International Publishing Switzerland 2016
Michael Silbermann (ed.)Cancer Care in Countries and Societies in Transition10.1007/978-3-319-22912-6_1616. Cancer Care in India
(1)
Institute of Palliative Medicine, Calicut, Kerala, India
Keywords
CancerIndiaCancer mortalityOral cancerPalliative careHealth care financingIntroduction
The republic of India with a population of 1.2 billion is located in Southern Asia, and covers an area of around 3,288,000 km2. According to the United Nations human development index (HDI) India is ranked 127/177 countries worldwide (value 0.602). This places India in the group of countries with medium human development.
Cancer is a major health problem in India. Mention of various disease conditions with signs and symptoms similar to cancer dates back to Sushrutha Samhita, the classical Sanskrit text of Medicine dating back to sixth century BC [1]. But pooling together these conditions under the common diagnosis of cancer happened only with the entry of western medicine in India.
As per available data, the rate of incidence of cancer in the country is only one-fourth of the rate in Western Europe. But the high number of deaths from cancer, particularly of patients at a younger age group than in the West, and the projected doubling of the incidence in the next 20 years make it a priority in health care. Absolute number of deaths due to cancer is expected to rise from the present 700,000 per year to 1.2 million by 2035 [2]. Cancer burden of the country is further complicated by socioeconomic inequalities creating problem with access to and affordability of treatment [3, 4]. These factors complemented by inadequate screening and early detection facilities have caused the low incidence but high mortality paradox in cancer in India.
Current Status of Cancer Care in India
Disease Burden and Outcome
Actual data on the incidence and prevalence of cancer in India are not available. Under-registration is a major factor resulting in inaccuracies in incidence and prevalence data. Estimates based on data from National Cancer Registry Program by Indian Council of Medical Research are the main source of GLOBOCAN data on India. ICMR projections based on available NCRP data show a current incidence of 1 to 1.1 million cancer patients in the country [7]. The age-adjusted incidence of cancer in India of 98 per 100,000 by GLOBOCAN is only almost half of the global average of 182 per 100,000 populations.
The main cancers in men are oral, lung, stomach, colorectal, pharyngeal, and oesophageal cancers. Main cancers in women are breast, cervical, and colorectal cancers. All other cancers have an incidence of less than 5 per 100,000 population and will come under the definition of orphan diseases according to the USA and European Union definitions [8]. Breast cancer is the most frequently diagnosed cancer in women, followed by cancer of the uterine cervix. Mortality from cancer in women also follows the same pattern. Oral and lung cancers are the most frequent in men. Lung and stomach cancers lead cancer mortality in men.
Oral cancers account for over 30 % of all cancers reported in India. Estimated age-adjusted rates of oral cancer in the country are 20 per 100,000 population as against 10 per 100,000 in the USA, and less than 2 per 100,000 in the Middle East. This is particularly important from the treatment point of view because early detection of oral cancer offers good treatment outcomes and long term survival in theory. Oral cavity is accessible for visual examination and diagnosis is not difficult as oral cancers and premalignant lesions have well-defined clinical diagnostic features. But the majority of patients with oral cancer in India end up with poor treatment outcome due to delays in diagnosis and lack of access to proper treatment facilities [9]. Tobacco consumption habits including chewing betel quid or khaini and smoking bidis and cigarettes have been identified as the common cause of oral cancer [10]. Available evidence also points to an association between alcohol consumption and oral cancer. A significant dose response relationship between intake frequencies, duration, and risk with an increased hazard ratio of 49 % among current drinkers and 90 % among past drinkers has been observed [11].
Though the incidence is less, cancer survival in India is poor when compared to the High-Income Countries. Available data indicates that fewer than 30 % of Indian patients with cancer survive 5 years or longer after diagnosis as against the 5 year survival of 60 % in High-Income Countries. International Agency for Research on Cancer estimated indirectly that about 635,000 people died from cancer in India in 2008, about 6 % of all deaths in India. This number is also about 8 % of all estimated global cancer deaths [2]. India is a culturally diverse country, with huge regional and rural-to-urban variation in lifestyles and in age-specific adult death rates [12]. The number and rates of cancer deaths in India is anyhow projected to increase because of population growth, increasing life expectancy, increases in the age-specific cancer risks of tobacco smoking [13].
A recent nationally representative survey on cancer mortality in India showed that cancer deaths accounted for 8.0 % of the 2.5 million total male deaths and 12.3 % of the 1.6 million total female deaths at age 30–69 years. In 2010, at all ages, the rates of cancer deaths were about 59 per 100,000 for men and about 52 per 100,000 for women. But the rates of cancer deaths per 100,000 individuals rose sharply with age and at age 30–69 years, these were about 98 for men and 95 for women. The survey also revealed that 71 % cancer deaths occurred in people aged 30–69 years. The three most common fatal cancers in this group were oral (including lip and pharynx), stomach, and lung (including trachea and larynx) in men, and cervical, stomach, and breast in women. Tobacco-related cancers represented 42.0 % of male and 18.3 % of female cancer deaths. Age-standardized cancer mortality rates per 100,000 were similar in rural (men 95.6 per 100,000 deaths and women 96.6 per 100,000 deaths) and urban areas (men 102.4 and women 91.2). Mortality rates varied greatly depending on the states and educational status of the patients. Men aged 30 in northeastern India had the greatest risk (11.2 %) of dying from cancer before the age of 70, where as the death risk for men was less than 3 % in the adjacent states of Odisha, Bihar, and Jharkhand. Women in the northeastern states of India also had the greatest risk (6.0 %) of dying from cancer before the age of 70. Mortality rates were two times higher in the least educated than in the most educated adults [14].
Cancer Care
Getting treated properly for cancer is not easy for an average patient in India. India’s public expenditure on health is one of the lowest in the world. Naturally, public health spending in cancer care is grossly inadequate to deliver a basic set of care for all cancer patients in the country [15]. For example, the ratio of radiotherapy machines available per population in India is 1 per 2–5 million, 10–20 times less than the ratio in High-Income Countries [16]. Health care remains highly privatized and commercialized for majority of patients in India and those with cancer are not an exception. Payment is mostly out-of-pocket despite the introduction of government-funded schemes in many states. It is estimated that more than 80 % of outpatient care and 40 % of inpatient care in cancer is provided by the private sector. Health insurance coverage is poor. Only around 15 % of the country’s population has some degree of health insurance coverage [17].
Lack of trained professionals is also a major issue in the area of cancer care, particularly in rural India. This has created the problem of limitations of patients to access competent professionals. A study of resource poor regions in India has shown that a huge majority (more than 90 %) of patients from rural households with cancer first report to private practitioners, majority of whom (79 %) are not qualified in modern medicine [18].
Cancer is expensive to treat. Households affected by cancer spent the equivalent of 36–44 % of the annual expenditures of control households on inpatient expenses alone [19]. When they have access to treatment facilities in public sector, most of the patients reporting to these cancer centers in public sector find that waiting times are unjustifiably long. Such prolonged waiting times, in addition to delaying treatment, causes substantial expenditure due to related issues like lost income, cost of accommodation near the treatment center, and expenses for food [20].
The issue of oral cancer, with potentially good treatment outcomes, typically demonstrates the complexities of cancer care in India. The greatest threat of the oral cancer burden exists among people belonging to lower socioeconomic strata in the country. This segment of the population is the most vulnerable because of higher exposure to tobacco. They are also the segment of the population with most limited access to education, early detection and primary prevention of the disease and treatment with the result that treatment is delayed or not accessible/affordable and treatment outcomes becomes poor [21].
Individualized Oncology in Focus
Early Detection of Cancers
Most individuals in India lack access to facilities for early detection of cancer. Not many centers or programs for cancer screening are available in the country. For example, screening facilities for cervical cancer is available only in some district-level government hospitals (each hospital catering to a population of more than 30 million people) as a free test and in some of the private hospitals on a payment basis. Visual inspection with acetic acid is available in a few Tertiary Cancer Centers. Human papilloma virus based molecular tests are mainly available only through corporate private hospitals [22]. Clinical examination is recommended as the method to screen breast cancer, though many private hospitals offer mammography in line with the approach in high-income countries. The main approach to detection of oral cancers is through clinical visual examination.
Treatment of Cancers
Since most patients present with advanced disease, surgery and radiotherapy remain two of the most important areas of intervention. A recent study on economic burden of cancer treatment estimated the average economic cost of treatment of a typical cancer patient in a government facility in India to be about US$ 600 [23].
Cost of cancer drugs are a major issue. Most of the newer molecularly targeted drugs from the multinational pharmaceutical companies are beyond the purchasing capacity of average citizen in India [24]. The question of interests of the patient vs. profit by drug companies in the light of the recent World Trade Organization directed new patent regulations has already surfaced by a couple of court cases. Pharmaceutical companies are fighting against decisions by the Patent Controller to issue compulsory licenses to local companies. These compulsory licenses will make the otherwise expensive drug available in Indian market at reduced prices. Novartis fighting a case for its leukemia drug, imatinib mesylate and Bayer on the cancer drug sorafenib. Bayer has even been arguing that “challenges faced by the Indian health care system have little or nothing to do with patents on pharmaceutical products”! [25].
Critical Clinical Issues
India is facing a low incidence–high mortality paradox in cancer [2]. The most important issue is that a large percentage of these deaths are preventable. 60 % cancer deaths in India are associated with tobacco or infectious diseases. Tobacco-related cancers represent 42.0 % of male and 18.3 % of female cancer deaths and there were twice as many deaths from oral cancers as lung cancers. The age-standardized death rate of 41.4 per 100,000 in men from tobacco-related cancers corresponds to a cumulative risk of 1.9 % of dying at age 30–69 years in the absence of other diseases. In women, the age-standardized death rate from tobacco-related cancers of 17.6 per 100,000 corresponds to a cumulative risk of 0.8 % of dying at age 30–69 years in the absence of other diseases. Cervical cancer is the leading cause of cancer death in India. The cervical cancer death rate of 16 per 100,000 suggests that a 30-year-old Indian woman has about 0.7 % risk of dying from cervical cancer before 70 years of age in the absence of other diseases [14].
Rates of cancer deaths in India are about 40 % lower in adult men and 30 % lower in women than in men and women in the USA or UK. But these mortality data should be seen in the background of incidence data. In age-adjusted terms the recorded incidence of cancer for India is only 94 per 100,000 people, which is only slightly more than half of the world average of 182 per 100,000, and about a third of the 268 per 100,000 recorded in the more developed countries [2].
Major factors making interventions cancer care less effective have been discussed. The main concerns from the point of view of oncologists that emerged in a study included practical constraints in access and treatment, cultural issues in communication, stigma associated with the disease, and inequalities related to place, gender, and class [26].
Palliative Care
Palliative care services can quickly and dramatically improve the quality of life for cancer suffers, other patients dying of chronic diseases, the elderly terminally ill and AIDS. Palliative care in fact relieves suffering and improves the quality of life of the living and dying. Majority of patients with cancer in India are in need of palliative care.
But with the rapid aging of the Indian population occurring, the highest number of patients needing palliative care will in the future come from the elderly terminally ill. India has a death rate of 7.4/1000 and a population of more than 1.2 billion which gives just under nine million deaths a year. The total number needing palliative care in India can be estimated to be 60 % of all deaths, or 5.4 million people a year.
Palliative care in India is about three decades old. But there is huge regional variation in the availability of services in the country. The south Indian state of Kerala with 3 % of the national population has more than 1000 home based palliative care services, with a quarter of them offering additional outpatient or inpatient services. Beyond Kerala, there are around 200 organizations providing hospice and palliative care services in 16 states or union territories. These services are usually concentrated in large cities and regional cancer centers, with the exception of Kerala, where services are more widespread. There is practically no palliative care service in most regions in the country, where health care professionals are not even aware of the concept of palliative care. There is no known palliative care provision in 19 states or union territories. There are places were excellent palliative care is offered to a lucky few in India, but overall less than 2 % of those needing pain relief and palliative care are getting it. If one takes out patients in Kerala (with more than 50 % coverage) out of this, the national coverage will be less than 1 % [27].