South Africa appeared on the cover of TIME magazine last year as the ‘world’s most unequal country’, with a Gini index of 63. Resource limitation, especially in reference to specialist health care services like dialysis, continues to be a major issue in 2020 ever since dialysis rationing began in the 1960’s. When the demand far outweighs the supply, criteria are developed based on the principle of utilitarianism in clinical practice. I saw it as a medical student and then as a junior doctor, and it formed the impetus behind my pursuit of a Master of Public Health.
When I was in my fourth year of medical school, I sat attentively at the kidney replacement therapy (KRT) meetings during my clerkships in Cape Town, where difficult decisions are made about who would be accepted into the limited chronic dialysis program. Several times, it was decided that a medically suitable patient did not meet all the criteria for a spot on the dialysis program. This occurs weekly where many patients, whose lives may be extended by dialysis, are denied on the basis of criteria which are unavoidable given the circumstances.
South Africa contends with a quadruple burden of disease of HIV, tuberculosis (TB), maternal and child mortality, and non-communicable diseases (NCD). Many people with advanced HIV, TB and uncontrolled NCDs develop chronic renal disease, and sometimes end-stage kidney disease (ESKD) requiring chronic dialysis. In order to get dialysis, individuals are assessed both from a medical and social point of view. They need to be deemed good transplant candidates; be medically well; have good social support to ensure that they will come for their post-operative appointments, and adhere to the medicine regimen so as to not reject their newly transplanted kidney.
The complex reality I learnt is that patients don’t have medical problems in isolation; their medical problems are in the context of their daily lives that are influenced to varying degrees by social, economic and psychological factors. Without money for transportation, patients cannot arrive to their scheduled follow up appointments; without access to food, patients cannot maintain adequate nutrition and take their medication; and without adequate social support, they are unlikely to get into a chronic dialysis program. Everything is connected; it’s like Jenga but not fun. Stark socio-economic inequality worsened by high burden of disease and limited resources will create a situation of demand outweighing supply. As a result, rationing of care has ensued. This, understandably, had triggered much public criticism. However, this approach is employed to ensure that not only are patients given the best chance at clinical improvement, but also that limited resources are allocated where they will be most effective and beneficial. As this applies to dialysis, the policies and guidelines are explicit and have withstood scrutiny from the South African Human Rights Commission.
Though these policies and guidelines are strict, many people were considered, but many others were not. Prior to 2004, people with HIV-infection were never considered for renal replacement therapy according to these stringent criteria. As such, they were never considered good transplant candidates. However, with wider availability of antiretroviral therapy and clinicians continuing to rigorously advocate for their patients, led to HIV+ to HIV+ renal transplants being pioneered in South Africa. With this, there is growing consensus among medical professionals that this practice of transplantation is justified, especially in a limited resource setting.
Though HIV+ to HIV+ kidney transplants increased the pool of kidneys available for transplant, dialysis remains a limited resource for the majority of the population that require it. Moreover, low deceased organ donation consent rates have not made it any easier to free up space on dialysis programmes. In order to do this, we need to increase the pool of organ donors through collaboration between the government, transplantation and public health professionals.
Supporting legislation to establish a National Organ Donation and Transplantation oversight authority would be one way to do this. This process would require executive buy in from the government, health care system and clinical practice changes across all transplant centers. Formulating a widespread policy that will ultimately expand access to and provision of organ transplant services will be a critical element for increasing capacity on our dialysis programs, along with establishing a central coordination system.
Central coordination and the infrastructure for good governance are essential for a national organ transplant program to have the whole hearted support of the population and health professionals. The establishment of a donation and transplantation focused standardized system which oversees all aspects of the process would serve to build public trust, display transparency, and provide a venue for accountability. Offering equitable access to dialysis, and ultimately transplantation continues to be an endeavour for nephrologists in South Africa.
Hloni Bookholane (@hlonibookholane) is an M.D. from South Africa, a Fulbright Scholar and currently enrolled in the MPH program at the Johns Hopkins Bloomberg School of Public Health.