I want talk to about kidney failure. I purposefully avoid the term “kidney disorder” or the more common “kidney disease”, because these are just euphemisms for the condition of the body where dialysis of the blood is vital as a result of kidney failure. I was dismayed by the State sponsored media’s report that the esteemed Namibian musician Jackson Kaujeua “died from a kidney disorder” (The New Era, May 31st and June 07 2010). The independent media was not much more lucid in their coverage of this musician’s terminal illness, because they at best implied that Kaujeua was suffering from “chronic kidney disease” (The Namibian 16 April 2010). Indeed, our current way of discussing kidney failure is actually failing the patients who need access to free, lifelong dialysis. In other words, the current discourse just does not work in the favor of opening up the doors to universal dialysis. Here I suggest how we can reform it by reconfiguring the way we talk about kidney failure and HIV/AIDS.
The media, it appears, has been at the forefront of pointing out the unavailability of dialysis for patients who suffer from chronic kidney failure. A case in point would be the way The Namibian recounted the story of a State kidney patient – David – who did not receive any dialysis at the Katutura State Hospital, even though he was referred there for treatment for chronic kidney failure (The Namibian 7th of December 2010). Moreover, The Namibian also spoke about how lifelong dialysis was not one of biomedical interventions that is eligible for financial support from the new State emergency fund (The Namibian 15 February 2010). These articles, however, should have gone deeper and explained what is at stake in not catering for chronic kidney failure patients. They should have explained how HIV/AIDS treatment is effectively denied to HIV positive chronic kidney failure patients. But I have yet to read a single news article where the link between HIV/AIDS and chronic diseases is exposed. Doing this would go a long way to recasting to nature of HIV treatment for the benefit of all people.
There best way to advocate for universally available dialysis is to use the governments own discourse: “ People living with HIV/AIDS can live a normal life, if opportunistic infections are prevented and treated.” This Statement appears on a Ministry of Health information pamphlet. Therefore, I ask what sense of normality is there for a body that is filling up with waste products because its kidneys are down. HIV positive people still have to cope with chronic disease, even though their immune systems can fight infections as a result of antiretroviral therapy. It is incumbent upon the government to now dismantle the chronic diseases that stand in the way of a “normal life” for HIV positive people.
I will now tell you about what physicians in Namibia and from abroad have said about HIV as a chronic disease, so that I buttress my own discourse with medical authority: “We need to bring HIV to table as one of the most important chronic diseases of the century.” I heard this from Dr Katjitae, the Ministry of Health’s technical advisor on HIV, during the Medical Association of Namibia (MAN) Congress of Chronic Illness and Cancer in March 2010. With regards to kidney failure, Dr Nelson from the Chelsea Hospital in London spoke at length about how HIV and antiretroviral treatment impinge on the health of the kidney.
After listening to Dr Nelson’s talk, I discovered that the HIV positive person is at the intersection of several contributing factors to kidney failure. This person is often black – that is to say non white – which already predisposes them genetically to chronic renal failure. Then there is what is known as HIV associated nephropathy (HIVAN) – the deterioration of the kidneys as a result of HIV infection that results in end stage kidney disease – irreversible failure of the kidneys. In this context ARV administration is a double edged sword – it prevents and treats HIVAN but it can also bring about kidney failure. In fact, all three classes of ARV, the NRIs, NNRIs and PIs, are implicated in acute reversible kidney failure. In some cases, however, this reversible kidney failure can become irreversible. It is at this point, where acute kidney failure becomes chronic, that the State stops providing dialysis to the patient. Activists for universal HIV treatment should be asking how this relates to the promise to treat HIV.
Back to the question of discourse, I wonder why the prominent renal specialist Dr Oosthuizen never mentioned HIV when he spoke about kidney disease in the media. Dr Ootshuizen opts to use common language to describe the causes of kidney failure: “diabetes and hypertension are the main causes [of chronic kidney failure] as well as various other causes” (National Radio Interview, March 2010) His discourse is devoid of technical medical terms such as end stage kidney disease or nephropathy. As a result, Dr Oosthuizen appears to sacrifice the etiological information embedded in medical terms for kidney disease, such HIVAN, for the sake of simplicity. Moreover, although he speaks about the chronic disease causes of kidney failure, he does not highlight how the HIV positive person is at higher risk for these diseases. For example, he omitted the well documented observation of ARV treatment is ‘cause of causes’ of kidney failure because it is implicated in diabetes and obesity. Hence, this biomedical knowledge underpins arguments for universal dialysis, but it is currently left out of the discourse.
So to argue successfully for free dialysis, we must be cognizant the way kidney failure is part and parcel of our HIV/AIDS problem. It is clear that by virtue of their HIV positive status, people become focal points of State sponsored socio-medical interventions. Access to ARV, the discourse surrounding “positive living” and “a normal life” are just some ways in which the human rights of HIV positive patients are valued in Namibia. This is what medical anthropologist Joao Biehl called patient citizenship which he observed in Brazil – the first developing country to universalize ARV treatment. Our case for universal dialysis treatment can thus be predicated on the discourse surrounding universal HIV treatment. Therefore, if our government aims to provide patient citizenship to people who are HIV positive, it should provide it to all.