Cancer trends and disparities in India: data needs for providing equitable cancer care
Authors: Surendra S Shastri
Journal: The Lancet Oncology (2018)

India, with a population close to 1·3 billion, and growing, is epidemiologically interesting and challenging for health-care planners. Regarding cancer burden, the population demographics, health policies, health-data recording, access to health care, and affordability have all improved substantially during the period between 1990 and 2016, as reported by The India State-Level Disease Burden Initiative Cancer Collaborators in their Global Burden of Disease paper in The Lancet Oncology.1India State-Level Disease Burden Initiative Cancer CollaboratorsThe burden of cancers and their variations across the states of India: the Global Burden of Disease Study 1990–2016.Lancet Oncol. 2018; (published online Sept 12.)http://dx.doi.org/10.1016/S1470-2045(18)30447-9Google Scholar In addition to the heterogeneity in cancer incidence and outcomes between states, significant differences exist within each state, most prominently between urban and rural populations. Health data availability, access to health care, and affordability are poor and have remained almost static over the entire period in rural areas, while they have improved substantially in urban areas. The issues of access to health care and affordability are a direct result of zero health insurance coverage in more than 95% of the population in India. The federal government of India is currently rolling out in a phased manner the National Health Protection Scheme (NHPS, also known as Modicare).2Ministry of Health and Family WelfareGovernment of IndiaNational health protection scheme 2018 (Ayushman Bharat Yojana).http://pmjandhanyojana.co.in/national-health-protection-scheme-2018-rashtriya-swasthya-sanrakshan-5-lakhs/Date accessed: August 9, 2018Google Scholar If properly implemented, this programme is likely to improve health-care access for the majority of the rural Indian population in the next decade. The India State-Level Disease Burden Initiative Cancer Collaborators have used the best possible data-sourcing methods available so far for India. The first population-based cancer registry, based in Mumbai (previously named Bombay), started in June 1963, and the first rural population-based cancer registry, based in Barshi, Maharashtra, was established in 1987. Cancer data collection has improved over the years and the Indian Council of Medical Research (ICMR) now has a fully fledged National Centre for Disease Informatics and Research (NCDIR). However, verbal autopsy with poorly trained data collectors and coders could make the process challenging. The federal government of India has made it mandatory for all citizens to possess a unique national identification number (Aadhaar Act 2016)3Unique Identification Authority of IndiaTargeted delivery of financial and other subsidies, benefits and services, Aadhaar Act 2016.https://uidai.gov.in/images/the_aadhaar_act_2016.pdfDate accessed: August 9, 2018Google Scholar that is currently linked to all financial transactions. This number will eventually also be linked to all social security benefits, including Modicare, making it an excellent database for future health-services planning in the country. It is heartening to note that the age-standardised incidence of the most common cancers (except breast cancer) has remained static over the past two and half decades, despite the assumption of under-reporting in the earlier part of this period. The incidence of cancer (except for cervical cancer, and except for the north-eastern state of Mizoram) is much lower than that in countries that can be said to be in a similar epidemiological transition as India (BRCS—Brazil, Russia, China, and South Africa), and substantially lower than in some developed countries with established prevention, screening, and early detection programmes.4Institute for Health Metrics and EvaluationGBD compare data visualization. University of Washington, Seattle, WA2016http://vizhub.healthdata.org/gbd-compareDate accessed: August 9, 2018Google Scholar However, the increased incidence of breast cancer in India is worrying and requires serious attention. The decrease in cervical cancer incidence despite the absence of population-based screening is interesting and calls for planned epidemiological investigation. The uniformly high cancer mortality might reflect the poor access to early detection and curative services, and lack of affordability. In this context, a comparison between urban and rural populations within states would have been interesting. The federal government of India has taken important policy decisions towards controlling cancer and other non-communicable diseases—eg, COTPA 2003 (Cigarettes and Other Tobacco Products [Prohibition of Advertisement and Regulation of Trade and Commerce, Production, Supply and Distribution] Act);5Ministry of Law and JusticeGovernment of IndiaThe Cigarettes and Other Tobacco Products (Prohibition of Advertisement and Regulation of Trade and Commerce, Production, Supply and Distribution) Act 2003.http://www.hp.gov.in/dhsrhp/COTPA%20Act-2003.pdfDate accessed: August 9, 2018Google Scholar however, except for a few successful Smokefree City programmes, and graphic package warnings, mechanisms to enforce the act are scarce since enforcement is the responsibility of each state. Although abundant data exist for tobacco use and its association with a number of diseases, there is a paucity of similar information about alcohol in India. Just like tobacco use in India and most of south Asia is different from the rest of the world, mainly due to the high prevalence of smokeless tobacco use, alcohol use (patterns and disease causation) are also worthy of countrywide epidemiological studies—a large proportion of the alcohol consumed by poor people in India is spuriously manufactured, and contaminated with various industrial chemicals. India has also embarked upon a population-based screening programme for cervical cancer, breast cancer, and oral cancer. However, the techniques chosen for these screening programmes are not optimal; although there is evidence for visual inspection with acetic acid for cervical cancer, it might be useful to switch to HPV screening as soon as it becomes financially feasible, and evidence for implemented clinical breast examination schedules for breast cancer and oral examinations for oral cancer is weak. Population-based screening for breast cancer starting at age 35 years will probably be a logistical nightmare, waste of resources, and even cause outright harm to patients. Although several studies showing the benefits of HPV vaccines have been published, strangely there is no consensus in India regarding the introduction of the HPV vaccine. I declare no competing interests. The burden of cancers and their variations across the states of India: the Global Burden of Disease Study 1990–2016The substantial heterogeneity in the state-level incidence rate and health loss trends of the different types of cancer in India over this 26-year period should be taken into account to strengthen infrastructure and human resources for cancer prevention and control at both the national and state levels. These efforts should focus on the ten cancers contributing the highest DALYs in India, including cancers of the stomach, lung, pharynx other than nasopharynx, colon and rectum, leukaemia, oesophageal, and brain and nervous system, in addition to breast, lip and oral cavity, and cervical cancer, which are currently the focus of screening and early detection programmes. 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