Anil, Nandini, Mamta, Ajay and Shekhar (names changed) were all similar-grade osteosarcomas of the distal femur, treated by identical neoadjuvant chemotherapy followed by surgery and adjuvant chemotherapy. All five received the same implant in surgery and all five had a similar rate of tumor necrosis as was noted on post-operative histopathology. Of the five, three (Anil, Mamta and Shekhar) survived for just over a year while the other two are still alive, six years after finishing surgery and chemotherapy. What killed Anil, Mamta and Shekhar while sparing the other two from a similar disease?
The biological parameters like age, height, nutritional status, weight, respective medical family histories, etc were similar in these five patients. They all belonged to the lower socio-economic strata of the Indian society and hence poverty was “equally” present or absent in their family to begin with. One of the common threads which tied the three was that Anil, Mamta and Shekhar belonged to the lowest rung of the Hindu caste system. All three were Dalits, the most underprivileged of all castes. Nandini and Ajay were baniya and Brahmin respectively, who occupy higher echelons in the caste ladder.
Social factors like class and race are known to affect the survivorship of those affected by cancers of different body parts, especially breast, cervical and oral cancers. Poverty is a known factor in poor survivorship as it causes delay in diagnosis and treatment of cancer. In a country like India where access to healthcare is limited and where class and caste are important determinants of health, it is strongly felt caste plays a major role in survivorship in cancer patients.
It is well established that survival among cancer patients in the Indian subcontinent is significantly less as compared to Western countries. While government programs are aimed at improving survival by creating health infrastructure and insurance-based schemes, the role of social factors like caste is still poorly understood. Race as a determinant of disease is also well documented in medical and sociology literature. In India, race is replaced by caste. Affordability, accessibility and availability of healthcare in India is dependent on both the patient’s social class and on caste. Instances of denial of treatment due to poverty and caste are not uncommon in India. With advancement in chemotherapy, radiotherapy and surgical techniques, survivorship of many cancers has improved over the last few decades but whether these improvements have trickled down to the most underprivileged sections of the society are yet to be seen.
All of the five patients in our case series resided in slums in Delhi but the three who died lived in slums specifically marked and inhabited by underprivileged castes. All five had working parents but two of the three who died had reported a loss of their father’s job at least twice during the course of treatment. The nature of the jobs being done by the ten parents was also interesting. The mothers of the three kids who died worked as house help while those who survived worked as security guards, a low-paid but yet more “respectable” job in the context of Indian society. It may be noted that to avail of a ‘respectable’ (not high-paying) job, caste plays an important role. Lack of money and hence poor follow-up visits were more common in the three children who died as compared to the other two.
The Hindu Caste system comes with baggage which can be detrimental to survivorship in cancers. Caste comes with poor or elated levels of sense of self-preservation and self-worth, which in turn brings in a sense of social security and usefulness to society. These factors along with literacy levels and family structures form important parameters which determine outcomes in cancer treatment. The cases depicted here bring into focus the narrative of caste as a determinant of health. Caste, like race, brings in misconceptions which shape the narrative of cancer care. The caste of the patient not only affects its outcome but also becomes important for cancer caretakers. Caste-based discrimination impedes cancer care. The social structuring of caste-based hierarchy determines access to health care in casteist societies like India. We strongly feel the need to expand on a ‘critical caste theory’ in line with the critical race theory. It will help us in putting the narrative of caste in many socioeconomic and political as well as healthcare reforms. It will be the basis of reducing cancer deaths in children like Anil, Mamta and Shekhar.
– Shah Alam Khan, Yogesh Jain