Abstract
India is a land of huge geographical, demographic and economic variations. As such, it has a very heterogeneous population and huge variations in the socio-economic status, access to health care and literacy. These provide unique challenges in the development of health-care policies. With other pressing health issues like malnutrition, maternal and child’s health and infectious diseases, there are no nationwide policies for cancer care. In addition to this, the health-care budget allocation compared to developed countries is abysmal. This has led to inequities in the distribution and availability of cancer care in India. With a majority of the patients ending up in the private sector for treatment, and because of misuse of technology in cancer care for profit because of dysregulated health care, there is inequity in distribution of cancer care. Lack of affordable care and inaccessible areas lead to many patients presenting very late and or dropping out of treatment, thus adversely affecting the prognosis. This is reflected in a disproportionately high mortality to incidence ratio. In this chapter, we will see the obstacles faced and the optimisation efforts to improve cancer care in India.
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Introduction
The burden of cancer is rapidly increasing in India. India’s cancer incidence is estimated at 1.15 million new patients in 2018 and is predicted to almost double as a result of demographic changes alone by 2040. Cancer mortality in India has doubled from 1990 to 2016 (India State-Level Disease Burden Initiative Cancer Collaborators 2018; WHO: Global Cancer Observatory n.d.). It is a crisis of gigantic proportions looming in front of our country. In addition to this, India is the second largest country in terms of population and seventh largest country in terms of size. Additionally, the geography is also varied with very limited access to certain parts of the country like Northeast India. The economic variations are also of gargantuan proportions. Almost 70% of Indians live in small districts and villages, earning not more than 10 dollars per day. Most of it is used for food, clothing and shelter (Devarakonda 2016). In addition to this, the public health spending is abysmal. Only one-fifth of health-care expenditure is publicly financed. The private health sector is a major player; however, insurance awareness as well as coverage is again dismal, leading to huge out-of-pocket expenses for the patient. Thus, management of cancers in India is a unique scenario with its own challenges. This chapter will cover the various aspects of the obstacles faced and optimisation being carried out at national, local and individual levels.
Historical Perspectives
Cancer in India like in the rest of the world has existed from ancient civilisation. However, no reports were available till the eighteenth century on the prevalence of cancer. The Indian Medical Service staffed by European doctors began to diagnose cancers in the late eighteenth and nineteenth centuries (Crawford 1914). Non-availability or the lack of access to medical facilities where cancer could be diagnosed, cultural habits preventing the use of medical facilities by native Indians, lack of knowledge and skills to diagnose cancer amongst native doctors, lack of compulsory certification of deaths by medical doctors, cover-up of cancer diagnosis because of social stigma and a lack of awareness amongst the native population regarding cancer and its causes and management, also prevented proper registry and data collection (Smith and Mallath 2019). A landmark study across India funded by the Indian Research Fund Association was conducted by Nath et al. in 1939 which showed that cancer was an important cause of death in all parts of India. This and other factors led to the birth of the Tata Memorial Hospital (TMC) which is considered the apex institute of cancer care in India. It was inaugurated in 1941 (Nath and Grewal KS: Grewal. 1939; Tata Central Archives 1957). Further developments included development of the Cancer Research Institute in 1952 and development of the first population-based cancer registry in 1963. Despite these promising developments in early post-independence India, the manpower and training have fallen woefully short of the exploding population and rapidly increasing number of cancer cases. Whatever workforce is available is heavily skewed towards the private sector and towards urban areas. More than 60% of specialist institutions and specialist are in the southern and western parts of India and in urban India, whereas more than 50% patients of cancer come from the central, eastern and north-eastern regions of India, thus further distorting service provision. From 1990 to present, the cases have doubled, and the death rates have increased by 60% in the same time frame. There is an urgent need to tackle this exploding epidemic.
Cancer Surgery and Surgical Oncology
As a result of the increase in cancer, all public cancer treatment facilities are overcrowded and teeming with patients, resulting in India’s cancer problem being called an epidemic. To add to this, there was no central accreditation board for surgical oncology till recently. This led to the development of the so-called part-time cancer surgeon. These were usually general surgeons, ENT (ear, nose and throat) specialists and gynaecologists with a non-formal or limited training in surgical oncology. This lead to substandard and non-standard management of cancer patients. On the other hand, there are also few hundred skilled surgical oncologists at par with one of the best in the world. They are the core “workhorses” who stretch their limits and provide cancer surgeries to cities and towns. However, for the patient population, they are woefully inadequate. This is compounded by the fact that public health-care spending is meagre coupled with poor infrastructure and the majority of the patients bearing the expenses through out-of-pocket expenditures. This leads to many patients moving to alternative therapies and/or not taking treatment at all.
The Lancet Oncology Commission on Global Cancer Surgery states that over 80% of cancer patients need surgery, some several times (Sullivan et al. 2015). However, providing timely, safe and more importantly affordable surgery is a complex task. It involves health policy decisions, training and management, infrastructure, delivery of care and economic and social issues (Misra et al. 2015). To add to this, there has always been difficulty to do randomised trials in surgery—mostly due to ethical reasons (comparing a surgical versus a sham procedure). Thus, this leads to less than 5% of world’s budget being allocated to research in surgical oncology. In developing countries, this is almost non-existent. Till ten years ago, there were very limited training opportunities for surgical oncology in India. This also added to disparities in cancer care delivery.
Obstacles and Optimisation of Oncology Services in India
The mortality: incidence ratio of 0.68 in India is far higher than that in very high human development index (HDI) countries (0.38) and high HDI countries (0.57) (Mallath et al. 2014). The cause for it is manifold. Firstly, there is advanced stage of diagnosis due to illiteracy and lack of awareness; secondly, due to limited access to quality cancer care; and thirdly, the inability of the patient to afford optimum treatment.
Standards of cancer diagnosis and treatment vary considerably between institutions, states and geographical regions. Though regional cancer centres exist in all parts of the country and geographically cover the population, they too have varying standards of care. This lack of uniformity caused patients to travel long distances for optimal care and also caused many patients to leave treatment incomplete due to financial or geographical constraints.
To combat this, various measures are ongoing at various levels—national, local (state) and individual levels.
National: To combat these disparities in standards of care and its availability, the National Cancer Grid (NCG) was formed in August 2012 with the mandate of linking cancer centres across India (Pramesh et al. 2014a). A modest initiative, which originally had 14 cancer centres, has rapidly grown now to include 253 major cancer centres virtually covering the entire length and breadth of the country and is amongst the largest cancer networks in the world. Funded by the Government of India through the Department of Atomic Energy, the NCG has the primary mandate of working towards uniform standards of care across India by adopting evidence-based management guidelines, which are implementable across these centres (Pramesh et al. 2014a).
It has four main objectives (Pramesh et al. 2014a), and these are the following:
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Patient care: To make a set of uniform implementable and simple guidelines for common cancers for easy uptake by the member centres, to make a systematic method of data capture of every patient being treated at a cancer centre and to include a voluntary process of audit and peer review are the steps which will aim to reduce disparities in the standards of patient care in various geographic regions of India.
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Education and training: To create a trained human resource pool, to facilitate exchange of expertise and mentoring between the centres and to have reservation of specialised oncology degree courses for candidates sponsored by the recognised government-run and regional cancer centres, thereby augmenting their trained manpower, are the objectives of education and training.
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Collaborative research: Lack of an established research network was one of the biggest lacunae in cancer care. NCG has already published a comprehensive paper on research priorities in cancer for India (Sullivan et al. 2014) and is working towards that goal.
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Cancer policy: As all the leaders in cancer care, education and research in India are primarily members of the NCG, it is a powerful force to shape cancer policy in India. With the help of its constituent centres, NCG has the natural ability to identify the burden of cancer real time and plan strategies to address specific problems.
Government: To tackle the challenge of non-communicable diseases (NCDs), including cancer, 599 NCD clinics at district level and 3274 NCD clinics at community health centre level have been set up under the National Programme for Prevention and Control of Cancer, Diabetes, Cardiovascular Diseases and Stroke (NPCDCS). Screening of common NCDs including three common cancers, that is, oral, breast and cervical, is also an integral part of service delivery under Ayushman Bharat—Health and Wellness Centres. To enhance the facilities for tertiary care of cancer, the central government is implementing the Strengthening of Tertiary Care for Cancer Scheme, under which setting up of 18 state cancer institutes and 20 tertiary care cancer centres has been approved.
The Tata Memorial Centre through the Department of Atomic Energy (DAE) is setting up six other cancer centres in different parts of the country functioning at par with TMC, Mumbai. These are located in Varanasi (two centres), Guwahati, Sangrur, Vishakhapatnam and Mullanpur. These centres would cater a large number of patients with cancer in all four zones of the country. The two campuses in Mumbai (Parel and Navi Mumbai) are also undergoing expansion in capacity (Anon 2019).
Traditionally, the health-care spending in India was stagnant and just around more than 1% of the GDP. Analysis of the Indian National Health Accounts estimates total health expenditure in India, from all sources, to be about 4.2% of the GDP with 80% being in private sector business (World Bank 2013). However, the health-care allocation has seen a jump of 137% for the fiscal year 2021–2022 as compared to the previous year ushering a small ray of hope. However, planned health investment rarely represents real disbursements, especially when it comes to revenue expenditures in complex disease care such as that for cancer (Mahal et al. 2010).
State: The Indian health-care system is characterised by high rates of privatisation since the 1960s, with low penetration of voluntary and social health insurance schemes and a high frequency of out-of-pocket payments. However, since 2007, the central government and many states in India have started health insurance schemes. These include the Rashtriya Swasthya Bima Yojana (RSBY, a central government initiative), Rajiv Aarogyasri Scheme in Andhra Pradesh, Chief Minister’s Comprehensive Health Insurance Scheme in Tamil Nadu, Mahatma Jyotiba Phule Jan Arogya Yojana (MJPJAY) in Maharashtra and Vajpayee Arogyashree Scheme in Karnataka. Though some like the Vajpayee Yojana in Karnataka and Chief Minister’s Scheme in Tamil Nadu have met with good success, most of these schemes focus on inpatient care with a low focus on costs from complications and outpatient care. Consequently, out-of-pocket expenses remain high.
Local: Many community-run initiatives such as the Self-Employed Women’s Association, Action for Community Organisation, Rehabilitation and Development, Indian Cancer Society and other nongovernmental organisations (NGOs) also support cancer treatment especially for the economically deprived communities. However, many are not designed towards the complexity, costs and delivery of cancer care.
Thus, despite the introduction of government-funded schemes and state and local NGO support, for the average patient with cancer in India, health care remains highly privatised, with more than 80% of outpatient care and 40% of inpatient care provided by the private sector (Pramesh et al. 2014b).
Solutions: Are There Any?
Despite the introduction of government-funded schemes, for the average patient with cancer in India, health care remains highly privatised, with more than 80% of outpatient care and 40% of inpatient care provided by the private sector (Pramesh et al. 2014b). Roughly 71.7% of health care is financed through out-of-pocket payments (Sullivan et al. 2014; Raghunadharao et al. 2015), with some studies estimating this to be as high as 90% in areas where public health insurance coverage is low (Thakur et al. 2011; Ladusingh and Pandey 2013). Moreover, most out-of-pocket payments are channelled into the private sector, which plays a major part in the provision of health services for outpatient visits (78%) and hospital stays (60%). Consequently, expenditures on private health, especially on drugs, remain very high (Govindarajan and Ramamurti 2013), exacerbating health inequalities. The absence of governance and regulation around private provision of cancer care is creating serious vertical and horizontal imbalances, the classical examples being brain drain to private centres because of attractive salary packages, unnecessary investigations, cherry-picking of patients and non-standardised treatments.
With all these in play, evidence has shown that the high percentage of out-of-pocket payments and low health insurance coverage has resulted in exposure to high financial risk, which pushes patients and their families into catastrophic poverty following a diagnosis of cancer. Almost 50% of patients discontinue treatment because of prohibitive costs. Around 10% of rural households become poorer because of out-of-pocket cancer costs.
So how do we combat this “epidemic”? In the public sector, the National Cancer Grid is taking phenomenal strides to achieve an equitable distribution of cancer care. There are few public-private (philanthropic) initiatives also in play. The private sector can also contribute in various ways. Only then can the entire scenario for cancer care change in India.
The following steps can go a long way in improving the cancer care in India:
National Cancer Grid (NCG) Initiatives
The following initiatives have already been started by the NCG to combat the problems in the delivery of cancer care (Pramesh et al. 2014a; Sullivan et al. 2014; Pramesh et al. 2014b; Pramesh et al. 2019; Raghunadharao et al. 2015):
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(a)
Adoption of implementable resource stratified guidelines.
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(b)
Systematic method of data capture at all centres as part of the grid.
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A voluntary process of audit and peer review: This is a unique initiative by the NCG as, in India, accreditation and peer review in Indian health-care providers have been the exception rather than the rule. Though accreditations like JCI (Joint Commission International) and NABH (National Accreditation Board for Hospitals) exist in India, they are mainly focused towards processes, systems and documentation rather than the medical aspect of health care. Few centres have already completed the review, and few centres are in the process of getting the review done. This will go a long way in standardisation of cancer care in India.
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Exchange of expertise and mentoring between member centres of NCG.
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Plan varying durations of training for physicians and paramedical staff to augment human resource.
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To increase number of training opportunities for specialist and to have reservation for government-run and regional cancer centres to augment their trained manpower.
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To prioritise research topics in Indian context and development of established research networks.
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To formulate a national cancer plan to improve the mortality: incidence ratio.
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(i)
Choosing Wisely India: The Choosing Wisely India is an initiative modelled after the Choosing Wisely in the USA and Canada but tailored to the Indian context (Pramesh et al. 2019). It has identified ten low-value and potentially harmful practices in the Indian cancer care scenario. The recommendations have been endorsed by all major cancer centres in India and the NCG.
Public Sector: Philanthropic Initiatives
Tata Trusts—one of India’s oldest, non-sectarian philanthropic organisations—is working in partnership with multiple state governments and central government to roll out a step-down, distributed cancer care model. The first state to reach implementation stage is Assam—a state in Northeast India, where the programme is jointly funded by the government of Assam and Tata Trusts. In this model, smaller centres interlinked with the apex centres through a technology backbone will handle diagnosis and care delivery (Anon n.d.-a; Anon n.d.-b).
Though cancer drug pricing is low in India, after calculating prices as a percentage of wealth adjusted for the cost of living, cancer drugs appeared to be least affordable in India and China. Also a market analysis recently revealed that there are many interhospital variations and peculiarities in the pricing of cancer drugs. This has promoted the setting up of a “Price Discovery Cell” which is a joint initiative of the Tata Trusts and NCG. The aim is to promote informed buying by the hospitals and also to consolidate buying by pooling demand and having economies of scale (Anon n.d.-b).
Private Sector Initiatives
The last decade has seen an explosion in the developments in the fields of medical, surgical and radiation oncology. Developments like immunotherapy, robotic therapy and proton therapy though latest do not always translate into best results and benefits to patients. In most emerging economies, there is a chronic underuse of therapies that can save lives (such as cervical cancer screening, basic surgery and radiotherapy) and a chronic overuse of interventions that, at huge expense to the patient, provide no meaningful benefit. This leads to inflated health-care costs in the private sector. Add to this the discrepancy in cancer drug pricing which takes the costs of cancer care in private sector through the roof. However, a change in the mindset and few changes in the way health care is delivered in private sector can make health care affordable, available and also profitable. This in the long run can also improve private sector participation in tackling the “epidemic” of cancer. The following techniques can go a long way in reducing the cost of cancer care in private sector which in turn can also reduce the burden on the public sector hospitals (Mir 2017; Anon n.d.-c).
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Focused processes and performance management: This includes not only standardisation of operational processes but also clinical processes. With involvement of the clinician in standardisation of clinical process, the outcomes improve, and morbidity goes down. This in turn helps in improved throughput of operating rooms and operational beds thus getting down the costs. The use of information technology and analytics can further help refining the process and delivering more robust performance.
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Integrated processes: Most organisations look at capital allocation and returns separately, with limited accountability through processes such as performance look-backs that track value created as compared to only cost of capital. Improved capital allocation should be strategically integrated with operational execution, measuring financial return over time to identify the need for process improvement and/or other strategic levels. The agility to boost return on underperforming clinical assets by applying smart strategies is a capability that will drive increasing value and at the same time help keep costs down paving way for affordable health care.
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Promoting innovations that suit local conditions: With the “Make in India” initiative promoted by the government, many devices and drugs are being now made in India at fraction of the cost required for importing those. The use of such “indigenous” capital intensive items can reduce the initial capital allocation and requirement thus promoting earlier return on investment (ROI) even while keeping the cost of treatment low. The classical examples in cancer care being the use of indigenous retractors, indigenous “HIPEC” (hyperthermic intraperitoneal chemotherapy) machines and indigenous chemotherapy ports.
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Investment in human resource rather than material resource: At higher centres, highly skilled doctors and paramedical staff are trained to do more skilled work. This improves clinical outcome and also improves efficiency, thus increasing the throughput. At the other end of the spectrum, training non-skilled or semi-skilled workers to take on paramedical responsibilities can help in outreach services and also provide basic care to the remote parts of the country.
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(e)
Patient empowerment : This includes empowering patients and their caretakers to take a more active role in managing their conditions, while enabling greater differentiation of services based on needs and desired outcomes. For example, head and neck cancer patients and relatives are taught with tube feeding and oral care which enables self-sufficiency at an earlier stage. This combined with home care by a trained home care team helps in reducing the patient’s hospital stay and costs and at the same time increasing the turnover of beds leading to both affordable and profitable care.
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Building scale: Increasing operating scale helps health-care providers in several ways: it supports the expansion of services, leads to improved asset and staff utilisation and enables increased investment in IT, performance management and new ways of working.
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Asserting frugality: This has been traditionally being done in Indian hospitals, where a single-use device is sterilised and used multiple times. As long as strict sterilisation norms are being followed, studies have shown that there has been no increase in morbidity or complications (Sullivan et al. 2017). This however often gets used to build up the ROI. However, if these get utilised towards reducing treatment costs, then more affordable cancer care can be delivered.
Hub and Spoke Model
For a country like the size of India, with its geographical, demographic and social variations, the only way to have uniform and accessible cancer care delivery is by the hub and spoke model. This coupled with the use of information technology, and social media can go a long way in not only delivery of care but also in spreading awareness and preventive measures (Devarakonda 2016).
On the backbone of the NCG, the private sector hospitals can also have a hub and spoke model. With the advent of many cancer treatment-specific hospitals, with proper use of resources and the points outlined in the previous section, an attempt can be made to make health care more affordable in private sector. The NCG can be a governing body for all the cancer hospitals in private sector to ensure uniformity of care. The “hubs” can be established in all major metropolitan cities with certain megacities and megalopolis like Mumbai and Delhi-NCR having more than one hub. These centres should invest in all latest technologies which may prove to be cost-effective if they get feeders from all their spokes. Moreover, there will be a focused group of dedicated specialists available here which can translate into improved outcomes for complex as well as esoteric cases.
The biggest advantage for cancer care is that because of the highly specialised nature of the treatment plans and protocols, it lends itself to formation of highly itemised standard operating procedures (SOPs). The use of these SOPs can make the management of standard and early cancers easier to learn and adopt even for non-formally trained doctors like general surgeons, gynaecologists, etc. With the help of NCG and the various “hubs,” these doctors can be trained to manage patients in the tier 1 and tier 2 “spokes.” In the most remote corners, non-allopathy doctors and paramedical staff can be trained to detect cancer at an early stage and refer to the tier 1 and tier 2 “spokes” (Devarakonda 2016).
It has also been seen that in India, a big factor adding to the cost of drugs and consumables is the fragmented and inefficient supply chain. As a percentage of cost of goods sold, the average supply chain cost of the pharmaceutical industry in India is 25% as compared to 10% globally. Supply chain efficiencies and tie-ups with the entire hub and spoke model can create economies of scale which will also bring cost of drugs down. This coupled with the “Price Cell” initiative of NCG can help drive the costs down further (Anon n.d.-b).
A recent update from the Telecom authorities of India showed that there are almost 1175 million mobile users as of December 2020 with over 800 million users having Internet connectivity (Telecom Regulatory Authority of India 2021). The advent of COVID-19 has expanded the reach of telemedicine. The use of this information technology can be used not only to spread awareness but also provide training to non-allopathy medical practitioners and paramedical staff. It can also be used to transfer encrypted patient’s data between the “hubs,” “spokes” and grassroot-level staff for second-opinion and treatment planning where trained staff is not available. This can thus ensure delivery of quality cancer care to the most remote parts of India too.
Certain hospital networks like the Narayana Hrudayalaya for cardiac care and Aravind Eye Hospitals for eye care have shown that such models work even in the private sector and can make health care affordable as well as profitable at the same time ensuring reach to the more remote parts of India (Govindarajan and Ramamurti 2013).
Conclusion
The misuse of technology in cancer care for profit is a major issue in many countries where health care is unregulated (Pramesh et al. 2014b). Developing country-specific management guidelines and linking government insurance reimbursements to adherence to these could further encourage providers to deliver evidence-based care (Sullivan et al. 2017). This work has been started in a great way by the NCG. Systems of accreditation for cancer centres both in the public and private domains could also help to ensure that institutions offer interventions only after demonstrating competence and achieving certain scores from patient’s feedback and peer review. Combining these policies in a hub and spoke model coupled with the use of information technology can definitely help in expanding the reach while minimising costs.
Involving the private sector and connecting private capital to a market orientation can bring efficiency to health-care provision while delivering high-quality, affordable health care to those in need. This has been well exemplified in the aviation sector wherein low-cost models have boosted the development of business models which are more profitable than their conventional peers. The use of techniques mentioned above can make cancer care available, affordable and even profitable (in the private sector) thus augmenting the reach and efforts of the public sector.
The director of Tata Memorial Hospital, the oldest and largest cancer hospital in India, has rightly said.
“Cancer ‘Moonshots’ may improve individual outcomes in developed countries , but what India needs is Cancer “Earthshots” that are focused on building infrastructure and delivering effective, evidence based, equitable and more importantly affordable cancer care” (Sullivan et al. 2017).
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Katdare, N. (2022). Obstacles and Optimisation of Oncology Services in India. In: Schmidt-Straßburger, U. (eds) Improving Oncology Worldwide. Sustainable Development Goals Series. Springer, Cham. https://doi.org/10.1007/978-3-030-96053-7_14
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