Not all diseases get the same kind of attention from the global medical community in their search for potential cures – for various reasons. But is the availability of an effective medical cure enough to treat the disease? Pankaj Sekhsaria deals with this question in his recent article How Users Configure Producer Identities: Dilemmas of Retinoblastoma Treatment in India (Economic and Political Weekly, Oct 7, 2017).
Retinoblastoma, a malignant eye tumor was associated with certain death until a century ago. Thanks to sustained efforts and medical advancements, the survival rate increased from 5% in 1896 to 81% in 1967. Yet infant children in India continue to suffer due to this form of cancer, retinoblastoma being one of the top five childhood cancers in the country. Sekhsaria attempts to explore why India continues to have the highest number of children with retinoblastoma in the world.
Healthcare in India may have been in the news recently for all the wrong reasons. But Sekhsaria notes how the “orphan cancer” – retinoblastoma (because it is not as commercially profitable as breast or prostate cancer) has found a home in at least two leading medical institutions in India. Based on his ethnographic experience at these centres, Sekhsaria makes some keen (and startling) observations.
Sekhsaria learns from the clinicians, and also observes the families of the girl children affected by retinoblastoma, that parents sometimes hesitate to get their girls treated for the cancer – because the treatment involves “enucleation”, that is, removal of the affected eye. The parents would even go to the extent of letting their children die a premature death than let them live with the affected eye removed. Why? “…because no one would marry her when she would be of a marriageable age.” The historical discrimination against the girl child continued to play havoc in the lives of infants affected by retinoblastoma even when the treatment was available in India.
Despite having access to the latest technologies (nanotechnology, in this case) and access to free treatment (for economically weaker sections), the medical fraternity was still not able to treat the patient – “the problem is as much social as it is technical”. Responding to this, Sekhsaria observed, the clinicians donned a new role – that of a social worker. They assembled a team of social workers to reach out to the families and to monitor if their children were brought to the clinic for regular treatment.
The other significant observation Sekhsaria makes is that the girl child, despite being the “primary user” of the treatment”, has no voice of her own. It is her family which gets “configured” as the user and makes life or death decisions on behalf of her. The clinician, on the other hand, has to go beyond the usual role of a service provider but also “treat” the social, cultural, religious and economic realities of the patient’s family.
Sekhsaria’s article is a valuable addition to the literature on social studies of science and it also brings to the fore the dilemmas associated with the clinician’s practice. A medical intervention remains useless unless the patient (the girl child here) is valued for what s/he is as a person.
The solution is not just social or not just technical but involves the “coming together of various strands” – clinicians donning the social worker’s hat, new technologies which can fight the cancer and sustained efforts to raise the status of the girl child. It is not enough “to produce more innovations or better identify user-driven innovations … the wider goal [has to be one] of political emancipation”.