Exemplified by these cases and the wider interviews, four key practices within the trajectories of health care seeking have been identified as underpinning the ‘work’ families in Mexico must do to secure health care. These are described in .
The Practical Work done by Mexican CKD Patients and their Families.
Taken together these practices constitute responses to the disintegrated character of care for the uninsured CKD patient in Mexico, drawing attention to its lack of structure and clear pathways to treatment. From the point of diagnosis, there is little information and no clearly defined administrative infrastructure. This means that families have to find their own routes through various public and private health care providers, laboratories, pharmacies, social support organisations and so on. In effect, each family has to ‘make’ a health care system for themselves, connecting together treatment as they go. That there is no financial coverage for this condition, despite the rhetoric of Seguro Popular's increasing coverage for the poor, means that every aspect of renal care has to be resourced by the family. Not only does this serve to make poor families poorer, it entrenches social and health inequalities, particularly gender inequalities, as the burden of care is disproportionately taken on by women as organ donors and carers as well as financial negotiators for health care.
What is evident in the work families do to negotiate access to health care is that the rhetorical distinctions between insured and uninsured break down and conflict in practice. This is demonstrated by the ways in which patients move between public and private providers and their associated insurance systems, depending on need, waiting times, quality of care and cost. For patients relying on renal replacement therapy, the consequences of this ‘zigzagging’ are inconsistency of care, difficulties in maintaining drug regimens, and making routine check-ups and monitoring. This profoundly threatens the sustainability of transplanted organs, due to infections, graft rejection and the haphazard taking of immunosuppressants.
Given efforts to increase access to renal replacement therapy for Mexico's poor at Hospital Civil, integrated care is of vital importance. In 2011, Hospital Civil had approximately 240 patients on peritoneal dialysis, 70 patients on haemodialysis and performed 53 transplants. This reflected an increase in capacity by the hospital, which had in May of 2011 opened a new, modern haemodialysis facility. Despite its limited resources, Hospital Civil remains one of the few centres in Mexico providing comprehensive renal care to the uninsured. However, in a context where families have become responsible for their own health care, ensuring access to renal therapy is not enough, particularly when sustainability and continuity of treatment cannot be guaranteed. This raises critical questions about the importance of resourcing, not only in Mexico, but across low and middle-income countries. In particular, it raises questions about the manner in which costs are currently distributed between state, industry and society, and how these costs could be better borne by these parties to ensure greater equity and justice in health care.
A potential limitation of this study may reflect the fact that the experiences of our participants may not be representative of the specific experiences of individuals who seek renal care at other public institutions in other states. Nevertheless, due to the ways in which treatment is configured in Mexico, we can point to wider lessons to be learned. Our approach has attempted to provide an account of the structure of interactions with the public health system and to focus on commonalities across the variable trajectories of individual patients. Given that Seguro Popular is supported by federal government and that this form of health care delivery is reflective of the Mexican system as a whole, it is reasonable, therefore, to suggest that the structuring of access to health care and the types of practices we have documented will be found in other states, and potentially across other conditions.