Dear Madam Nghidinwa,
I am a freelance,volunteer, writer for the HIV clinicians society and I just finished a piece that you will find below. Elizabeth, the secretary for the HIV clinicians, connected her line to Intrahealth offices, because she is absent. I am also sending her this email so she can email the HIV clinicians. However, if you find this piece edifying, it is about chronic disease, please feel free to forward to the members of Intrahealth.
Please feel free to email me with any comments, especially in light of the recent death of Jackson Kaujeua due to what the state press cited as a “kidney disorder”.
Islands of Illness: HIV and Chronic Disease? By Pancho Mulongeni
I recently attended the international congress in bridging disciplines of the Medical Association of Namibia (MAN) in Windhoek. I am not a physician; I attended as a writer who is interested in the medical anthropology of AIDS. The conference was particularly enlightening for me, because HIV was featured in this years MAN congress which focused on chronic disease and cancer. The inclusion of HIV in the discourse surrounding chronic disease, I discovered, is imperative given the many manifestations of chronic disease in people living with HIV. Notwithstanding this initiative, the streams of knowledge emanating from medical experts about the intertwining of HIV with traditional risk factors for chronic disease perhaps only enlightened the people in our conference room – the room where members HIV Clinicians’ Society met. To my knowledge, the remaining MAN congress delegates were not members of HIV Clinicians Society. They were members of MAN and perhaps this was why they met in “MAN” conference room. In fact, the programme attested to this segregation– a “chronic illness and cancer” session alongside a concomitant “HIV parallel session”. Conferences are places where streams of knowledge flow and come together, but I wonder whether this was the case for the MAN Congress. Metaphorically speaking, it appeared that HIV issues where relegated to their own island, while chronic disease and cancer where on another. Here, I examine how physicians who are isolated on these ‘islands of illness’ loose out on a holistic and beneficial approach to treating chronic disease.
The body is the crossroads where illness, treatment and health intersect in non-linear ways. The intersection between chronic disease and HIV is especially vivid in the patient who is on antiretroviral treatment (ART). A common side effect of first line ART regimens is the disfiguring condition known as lypodystrophy. It is a chronic disease owing to its non-communicable and potentially life-long nature. However, unlike more discreet conditions, lypodystrophy is characterized by abnormal body fat distribution. For a patient, this means revealing to the world that something is amiss – almost a signpost for their HIV. Hence, much of the conference on HIV as a chronic disease was devoted to managing patients on ART in the context of undesirable side effects.
One of the most troubling case studies of how HIV affects chronic disease vulnerability came from Dr Dave Johnson from South Africa. His patient is a sixty one year old lady of Indian descent whose first ART regimen gave her lypodystrophy. Because she could not bear this condition, Dr Johnson switched her to another regimen that he hoped would not exert this side effect. Unfortunately, she was hypersensitive to the second regime which resulted in a dilapidating illness. With two consecutive ART regimens that did not work for her, the patient was ready to give up treatment altogether. Dr Johnson, however, managed to convince her to continue treatment, but on a third regimen. This regimen did not provoke unpleasant side effects and so the patient adhered to it. But then she developed Fanconi’s syndrome – a rare condition where protein is excreted in the urine. Attributing this to her ART regimen, Dr Johnson put her on a fourth regimen – containing some of the most cutting edge anti-retrovirals available. In spite of this, she developed non-insulin dependent diabetes as a side effect of a protease inhibiting antiretroviral. Now this patient is attempting to regain an unassuming physique while taking treatments for HIV, Fanconi’s syndrome and diabetes. She is living evidence of how the line between HIV and a chronic disease is invisible, much like the line between the Indian Ocean and the Atlantic.
I wonder whether the Congress of MAN discussed how life with HIV often comes with an increased vulnerability to chronic disease. Nowhere is this more evident than in case of cancer, given that the term “AIDS defining cancers” was introduced in the HIV conference I attended. The relative risk for cervical cancer, Dr Johnson explained instance, is much higher for a HIV positive people than negative people. In light of this, I wonder why the talk titled “Preventing Cervical Cancer” was not a joint talk for members of MAN and those of the HIV clinicians’ society. This cervical cancer talk, however was happening in conference for “MAN conference” while I was attending the “HIV conference”. The set up of two parallel conferences necessitated that delegates chose which one of the two to attend, and once this choice was made, there was no movement in between the two. Perhaps this was the reason the HIV clinicians sitting around me bemoaned the low turnout for the sessions dealing with HIV and chronic illness. Likewise, if HIV was part of the discourse during the MAN conference, I imagine that the delegates should have been perplexed by the absence of prominent HIV physicians in Namibia.
There were indeed two islands at the MAN congress – with members of HIV clinicians’ society their own island and members of MAN on the other. By this point, I hope you agree that these two medical associations would have done well to hold a single conference. However, I still want to highlight the danger of such psuedosynthesis of HIV, chronic disease and cancer.
The notion that HIV is a special disease that requires special treatment is misleading, given how the health issues surrounding HIV bleed into chronic disease and cancer. A failure to recognize this means that useful approaches to tackling HIV and chronic disease will be missed.
The chronic disease of the kidney – most often manifested in chronic kidney failure – best illustrates this missed opportunity. In the HIV conference, a physician at the Katutura hospital lamented the fact that HIV positive patients are always diagnosed with HIV associated nephropathy (HIVAN) for chronic kidney failure. Apparently, this diagnosis is given even when the physician wants to query whether this is indeed the correct diagnosis. Consequently, other causes of chronic kidney failure – notably hypertension, diabetes and a hereditary predisposition are misdiagnosed as HIVAN. HIV positive people appear to be clinically stereotyped as ailing from a manifestation of their HIV. The repercussions of this stereotypical diagnosing have yet to be identified.
But the kidney disease example is particularly complex, because HIV acts in synergy with other risk factors for chronic disease progression. As we have seen, ART associates with diabetes, which in turn is a risk factor for kidney failure. Moreover, ART treatment is known to contribute towards obesity, which predisposes the body to hypertension – another risk factor for kidney failure. In addition, there are antiretroviral drugs that cause reversible kidney failure that if left untreated progresses to chronic. HIV infection thus is a risk factor for chronic kidney disease in both direct and indirect ways, acting in concert with risk factors present in the general population.
Ultimately, it is up to the physicians to recognize these interactions for the benefit of their patients. A kidney specialist, Dr Oosthuizen, failed to recognize this when spoke to media about the MAN congress. He missed the opportunity to stress the interconnectivity between chronic disease, cancer and HIV. As a leading kidney specialist, he stressed the unavailability of free dialysis to treat chronic kidney failure in poor patients. He even pointed out chronic kidney failure is set to rise in Namibia as part of a global increase in chronic diseases. But with regards to the etiology of kidney failure, all he mentioned was that diabetes and hypertension were the main causes. Living with HIV, as we have seen, can be a principal cause, but that was left unsaid to the detriment of all those who need dialysis.
The specialist should have emphasized how providing universal dialysis is imperative, given the government’s promise to give people living with HIV a “normal life”. The South African AIDS Prudence Mabele underscored this principle: “My logic is that if you can give drugs to the diabetic patient, why not with AIDS? HIV is a chronic illness”. For Mabele, universal HIV treatment was predicated on the existing access to treatment for recognized chronic disease, namely diabetes, in South Africa. In Namibia, universal HIV treatment is guaranteed by the government, but this is limited to pharmacological treatment. Therefore, the concept of “HIV treatment” must be recast to encompass dialysis and other biomedical technologies that are vital for chronic disease patients. But first physicians must truly bridge disciplines; they must connect HIV, chronic disease and cancer in the medical discourse, as Mabele advocated for. And even if they inhabit ‘islands of illness’, they are united by the human body, just like the Isle of Man is part of the United Kingdom.