By Aryeh J. Price

Dr. Mohandas Mallath is a Senior Consultant in the Department of Digestive Diseases at the TATA Medical Centre in Kolkata with expertise in Gastroenterology, Digestive Oncology, and Cancer Epidemiology, having been trained at Tata Memorial Hospital Mumbai, Memorial Sloan Kettering Cancer Center and the Medical College of St. Bartholomew’s. In addition to his appointment at TATA Medical Centre, Dr. Mallath is a member of the Digestive Oncology Task Force at the World Gastroenterology Organization. He previously served as Dean Academic of TATA Memorial Center, Mumbai, Director of the Center for Cancer Epidemiology at the TATA Memorial Centre and Headed the Department of Digestive Diseases and Clinical Nutrition. He was also a member of the Academic Council of Medical Council of India

His clinical focus is on preventing and managing gastrointestinal cancers. In “The growing burden of cancer in India: epidemiology and social context”-Part-1 of a series in The Lancet Oncology-Dr. Mallath comprehensively characterizes the multi-faceted threat that cancer poses to India and highlights persisting barriers to adequate care. Epidemiological analysis carried out at region-level resolution elucidates the complex landscape of Indian oncology. The paper also examines fundamental limitations on the quality of available population data and provides potential solutions to India’s emerging oncological challenges. 

In your paper, “The growing burden of cancer in India: epidemiology and social context”, you provide statistics outlining the incidence of cancer with respect to tumor type and gender. How does India compare to other countries with a similar socio-economic distribution?

The age-adjusted incidence rates of all cancers in India are lower than those in most developed and developing countries. Among the emerging economies (e.g. the BRICS countries*), India has the lowest cancer incidence rates. The incidence of gastrointestinal cancers is remarkably different with Indian incidence rates being one third to one sixth of those in other BRICS countries.

*Brazil, Russia, India, China, South Africa

What are the limitations of deriving epidemiologic data from multiple sources as was necessary in your study? What is preventing the establishment of an Indian national cancer registry?

India doesn’t have a national cancer registry. India’s national cancer burden is estimated from 12 population-based cancer registries with reliable data, though they may not accurately represent the national data. The Indian Council of Medical Research has established another 18 population based registries, but the data from these need quality improvement. The reasons why India doesn’t have a national cancer registry are many. Limited finances, lack of a national identity number and the lack of reasonably good health care facilities in most rural and remote regions are some of the reasons. The government spends just 1% of its GDP on health and another 3% comes from out of pocket expenses.

There is an effort to create more population-based cancer registries. Many of us have suggested making cancer a notifiable disease. Some states have done that. But anonymous patient tracking and avoiding duplicate registration is a challenge as the patients go shopping to several institutions for cancer care. The International Agency for Research on Cancer (IARC) based in Lyon,France has created a Cancer Registry Training Hub for Southeast Asia at Tata Memorial Hospital Mumbai. I hope this will help to improve cancer registration across India.

Can you describe what strides are being made in India in treating infectious disease and how this relates to the increasing burden of cancer?

For almost 60 years since India’s independence, most of the attention has been directed towards the control of infectious diseases. This includes cholera, small pox, malaria, kalaazar, tuberculosis, HIV/AIDS and so on. The vaccination program now has much better coverage and reaches out to remote parts of India. There is a lot of governmental spending on vaccinations including hepatitis B. An active AIDS control program exists. These developments along with improved sanitation and personal hygiene are lowering the cancer-causing infections such as hepatitis B, and Helicobacter pylori. A vaccination for HPV is being tested in phase IV trials. As a result of these measures,premature mortality from infectious disease has declined steadily and contributed to longevity, which has increased the life expectancy of Indians by 60% since independence. This is contributing to the increase in cancer burden due to aging of the population. The age-adjusted rates for all cancers in India have remained static. The incidence of cervical cancer has decreased while breast cancer has increased. It must be noted that with the exception of HPV-related cervical cancers, the incidence rates of other cancers caused by infection such as stomach and liver cancer are fairly low in India.

What are some of the major challenges in gaining political commitment and action in response to India’s cancer burden?

As stated earlier, the governmental spending on health is very low and there have been fewer funds allocated for cancer control. Population control, mother and child health, and the provision of basic amenities like clean water, sanitation, basic foods and basic education, and control of communicable diseases are bigger national priorities. Over 80% of health care expenditure is out of pocket and hence, universal health care has never been an election agenda. After continuous campaigning by several NGOs and academicians, the governments have enacted laws that have brought down the use of smoked tobacco. Unfortunately, chewing of tobacco is a big problem in India and the control of chewed tobacco is still far away from the desired goal. As a result of campaigns by NGOs, research publications on cancer and the occurrence of cancers in famous Indian personalities and family members of politicians, the general awareness has increased and the government has suddenly started to invest more in cancer care. The central government has proposed to spend a substantial amount of money on cancer control in the current (12th) 5-year plan.

What are the primary resource constraints on the Indian health system and how could it best respond to the challenges of delivering highly technical and expensive oncologic care?

Low per capita GDP limiting the health care expenditure, large population affected by double burden of communicable and non-communicable disease, limited health care facilities in rural India, and overcrowded and overburdened health care facilities in urban India are some of the common constraints. In addition, there is a severe shortage of trained oncologists, radiotherapy and laboratory technicians, and oncology nurses in India. There is a big problem of brain drain. The US is a primary destination. To attract qualified and trained manpower to less developed towns and rural settings is another big challenge. There is seriously skewed distribution of cancer care facilities with Central and Eastern India having 45% of the Indian population and 25% of national cancer treatment facilities. The Indian health system can improve by creating comprehensive cancer treatment facilities in all major district places. Say, one in every 200 KM radius. We need to prevent people from going to very far places for cancer treatments. A triage mechanism needs to be created to separate those with curable cancers from those who are incurable so that the existing treatment facilities are notover burdened with patients. In order to meet the manpower shortages, interim measures such as short-term training of existing staff need to be carried out in a time bound manner. The facilities for training oncology work force and the number of trainee positions need to be increased substantially for a limited period of time. All this would require more health care spending and the establishment of a sustainable public-private partnership.

Conveying the importance of establishing oncological infrastructure in India will require substantial public education efforts. What do you think is the best way to accomplish this?

I am a strong believer in the notion that “health literacy is the most important prognostic factor”. We really need to educate the public all over the world about tobacco use and the risk of dying prematurely from cancer and other NCDs. We need to increase health literacy for prevention, and enable people to seek early medical care when symptoms arise. Going to an appropriate cancer care facility rather than trying out some cheaper alternative therapies for months that promise cures with no side effects, completion of cancer treatments, timely management of toxicities, infection control, and regular follow up are some other attributes of cancer literacy. Removing the fatalistic attitude of the public is a major challenge that is also very essential.

Television, mobile phone and internet are very powerful and popular communication media in India. They should be used. Education of masses through these media will go a long way in improving cancer control in India. Like the family planning program in the late sixties and early seventies, the Indian government needs to spent more money on health education (say one dollar per person per 5 years; equivalent to about 1.3 billion dollars) to improve health literacy.

In the conclusion of the paper, you mention potential innovative healthcare mechanisms to help address the growing cancer burden in India. Can you describe the scope, objectives and merits of the National Rural Health Mission and the Rashtriya Swasthy Bima Yojna Insurance Schemes?

The present National health mission (NHM) started as the National Rural Health Mission (NRHM) in 2005 and was combined with a National Urban Health Mission (NUHM) in 2012. The NRHM had initially focused on the health needs of the most backward states with poor public health indicators. The NRHM has helped to create a community-owned, decentralized health delivery system to ensure on a wide range of determinants of health such as water, sanitation, education, nutrition, social and gender equality. The revised NHM has included non-communicable diseases and expanding health coverage to urban areas. There are several components of the NHM including creation of community health volunteers called Accredited Social Health Activists (ASHAs), Patient Welfare Committee, Hospital Management Society, several programs for mother and child welfare,National Mobile Medical Units (NMMUs), National Ambulance Services. Distribution of Free Drugs and Free Diagnostic Service is a new initiative launched under the National Health Mission to lower the out-of-pocket expenditure on health. Overall, the NHM has been partly successful. Its effect of national cancer control is minimal.

Our government started a health insurance scheme called Rashtriya Swasthya Bima Yojna (RSBY) from 1st April 2008 for people living below the poverty line. The aim was to assist marginalized people  seriously threatened by an illness to prevent families falling into a debt trap. Poor families ignore the need for expensive and prolonged treatments because of lack of resources, fear of wage loss, or they wait till the last moment when it’s too late. The objective of RSBY is to provide protection to below poverty line (BPL) households from financial liabilities arising out of health problems. Beneficiaries under RSBY are entitled to hospitalization coverage up to a ceiling for most of the diseases that require hospitalization. Pre-existing diseases are covered and there is no age limit. Coverage extends to five members of the family. Beneficiaries need to pay only Rs. 30/- (Half a dollar) as the registration fee and the Central and State Government pay the premium to the insurer selected by the State Government. The RSBY provides the participating BPL household with the freedom to choose between public and private hospitals. The RSBY runs on a business model  with incentives built for each stakeholder including: the family, the insurer, the hospital and the intermediaries such as NGOs. By paying a maximum sum up to Rs. 750/ (15$) – per family per year, the Government is able to provide access to quality health care to the BPL population. Every beneficiary family is issued a biometric-enabled smart card containing their fingerprints and photographs. All the hospitals empanelled under RSBY are IT-enabled and connected to the server at the district level. The use of biometric-enabled smart card and an IT-enabled management system makes this scheme safe and limits its abuse. This program is working well in many south Indian states. Cancer care is also covered under the RSBY.

What factors have contributed to the lack of formal oncology training in India?

Formal training in oncology has been around for almost 40 years. The Indian training is modeled on the American Fellowship Program of 3 years in surgical oncology, medical oncology and radiation oncology. What is truly lacking is a large number of training positions. There is a “catch-22” situation with limited training centers having limited training positions. As early as 1946, the Bhore Committee report had suggested that every medical college should be provided with cancer treatment facilities. Unfortunately, after the Independence in 1947 this aspect was forgotten and as a result, less than 20% of Indian medical colleges have comprehensive cancer treatment facilities. By simply creating a comprehensive cancer unit in each of India’s medical colleges we could have 360 cancer treatment facilities, which is over 10 times the current number of 32 regional cancer center facilities. This will also expose young doctors in training to understand the concept of “multi-modal treatment” of cancer which is completely lacking in India. It is also possible that the millennium development goals, which did not include cancer control, had a role to play in keeping cancer training out for so long. Sadly, cancer work forces are highly sought after by private for-profit cancer centers in India and command very high wages. Hence, there is a new challenge in keeping these highly skillful trainers in medical colleges with limited facilities and lower salaries. The medical council of India that regulates the training does not allow part-time medical teachers to be included as faculty.

How is cancer perceived among individuals in India? Is stigma pervasive?

There is a dire need to remove the stigma attached to cancer. Cancer spells gloom and sends patients and their caregivers into depression. The fear of side effects and cost of cancer treatments drives many to try alternative therapies.In the current situation, of the 100 new cases diagnosed, there are 70 cancer deaths each year. This strengthens the fear of cancer. There is an urgent need to show the people that cancer can be cured if diagnosed early and treated properly. Like HIV and AIDS in the early 1990s, improving survival is the key to de-stigmatization of cancer.