Dr Silky Jain, Senior Paediatric Haemato-Oncologist and BMT physician in Delhi NCR highlights that with over 70 per cent of India’s population living in the rural areas, challenges such as lack of education and awareness about childhood cancer, its early signs and the ideal course of treatment, and financial constraints, still persist. This eventually leads to frequent cases of advanced malignancy, poor health outcomes, abandonment of treatment, and high mortality rate
Isn’t it startling to witness that more than four lakh children across the world are diagnosed with distinct types of cancers, with an estimated number of seventy-five thousand children developing cancer every year in India? What makes the predicament more worrisome is the lack of accessibility to the right treatment in regions that have dearth of advanced medical facilities and qualified physicians specialising in controlling and even curing the most complex cancers in children. While early-stage cancers are still manageable, children with advanced malignancy suffer the consequences of this urban-rural disparity the most.
A 2019 journal study by Lancet Oncology stated that maximum cases of childhood cancers are from lower to middle income countries (LMIC), and the survival rates among these children are extremely low. About 80 per cent of children with cancer live in LMIC, but the survival is only about 20 per cent, vice-versa being true for high-income countries (only 20 per cent of childhood cancers stay in HIC, and their survival is about 80 per cent). With over 70 per cent of India’s population living in the rural areas, challenges such as lack of education and awareness about childhood cancer, its early signs and the ideal course of treatment, and financial constraints, still persist. This eventually leads to frequent cases of advanced malignancy, poor health outcomes, abandonment of treatment, and high mortality rate.
While there are diverse factors involved in ensuring an efficient course of treatment, majority of them are associated with expenditure concerns and awareness scarcity due to lack of education in remote areas. This is usually witnessed in two situations, diagnosis of the disease and during initiation of the treatment.
Lack of awareness: Missing the early signs
The significant dearth of quality education in the rural parts of India contributes to lack of awareness and basic understanding of complex diseases like cancer, leading to delayed attention to signs and symptoms of the disease in children. Considering prime decision makers in such cases are parents, they often ignore symptoms in the early stage of the disease. Even if they reach out to local physicians/paediatricians, often in villages, practitioners are not aware about childhood cancer signs/symptoms, leading to an incorrect course of treatment. When it comes to disease investigations, often pathologists fail to differentiate cancer cells from normal cells in blood tests or biopsy samples, due to lack of practical and theoretical experience from pertinent academic institutes. In addition, there is little knowledge about ‘paediatric oncology’ as a speciality. When referred to an oncologist (physician who deals with cancer), parents either reach out to medical oncologists or haematologists who treat adults. Since the needs of children suffering from cancer and the nature of cancer in children is different compared to adults, it is important to pursue treatment under care of a paediatric oncologist.
Financial instability & disbelief: Unable to set the correct intent
Be it urban or rural, multiple myths associated with the term ‘cancer’, are a major hurdle in timely diagnosis and treatment of cancer in children. While the urban counterpart has enough resources to dissect the information, rural population often faces difficulty in accepting the reality of their children being diagnosed with a disease like ‘cancer’, further believing that its incurable. In fact, on the contrary, childhood cancer is curable in majority of cases if diagnosed at an early stage and is treated as per the advice of a paediatric oncologist. In situations where further investigation is required, patient families often step back due to the lack of financial stability. Also, sometimes families may lack the motivation to invest in the treatment of a child, especially if it’s a girl child or if there are many children in the family. Male/female bias is often also seen in cancer registries, confirming the fact. Furthermore, most parents in the rural areas either do not have health insurance or aren’t enough aware to leverage the existing government schemes that facilitate cancer treatments for poor families.
Poor healthcare infrastructure
Around 70 per cent of India’s population lives in rural areas, yet almost all cancer care facilities are located in cities. This makes it necessary for patients from rural areas to move to larger cities for cancer treatment. These patients often arrive late to the tertiary cancer centres (TCCs) due to financial and cultural obstacles. Furthermore, in order to relocate to the city, they often lose their existing jobs and wages, which often leads to refusal, or abandonment, of treatment. The truth is that there are NGOs working all over India, to address these challenges. They work with the goal of providing holistic care to children, in the form of ‘home away from home’, social worker support, investigations which can be done at subsidised rates and sometimes medicines which can be procured at economical rates.
Fears associated with chemotherapy
It is no surprise that a fear connotation is attached to the word ‘Chemotherapy’ as many parents assume that chemo treatment would drastically interrupt with their child’s daily life and with future prospects. From losing hair to becoming sick, different apprehensions associated with chemotherapy often discourage parents to go ahead with the treatment. As an alternative, parents, who are the prime decision makers in childhood cancers, often get lured by alternate treatment options like homeopathic or ayurvedic, ending up with an advanced disease before seeing the right doctor. Knowing that the paediatric oncology resources in India and abroad are seeing new progress every day, it is important to spread awareness regarding the advanced treatment and improved cure rates. There are various targeted agents and immunotherapy drugs now available, which are devoid of many acute side effects, often encountered during conventional chemotherapy. Having said that, it is equally important to know that immune/targeted therapy is not indicated in all cases, it is expensive, and that chemotherapy side effects are temporary in majority of cases.
With the emergence of dedicated paediatric oncology care centres and training programs across the country, India’s childhood cancer services have improved significantly over the past few decades. Indian collaborative scientific trials are enabling uniform treatment protocols to be adopted across the country. Also, financial support through government schemes, and holistic support from philanthropic organisations are improving treatment results. However, there still lies huge scope for India to recognise, diagnose, and treat childhood cancer. With WHO pitching in through Global Initiative for Childhood cancer (WHO-GICC), and huge active representation from India in advocating for the cause, hopefully with time, the urban-rural disparities will reduce. The ultimate goal should be to provide equitable, accessible, and quality cancer care to each and every child.
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