The HIV clinic at Zithulele runs on Wednesday and Thursday and is a bustling place where people come to start their HIV treatment (ARVs), some as outpatients, some in their nightclothes directly from the wards; most however are attending for their regular follow up checks, blood tests and to collect their new prescriptions. In times past, before the majority of patients were devolved or ‘down referred’ to the eight peripheral clinics, it was ‘hectic’ (a term widely used here to describe almost anything that is extreme). I am told it is quieter now although it stretches the definition of quiet. Piano it certainly isn’t, nor even mezzo piano. I would rate it as mezzo forte for most of the time with occasional forays into allegro fortissimo con fuoco.
I am timetabled to be in the HIV clinic for the whole day today, sharing the morning clinic with an experienced colleague and flying solo in the afternoon. In a themed clinic where the HIV related clinical problems are effectively managed algorithmically it is not too intellectually taxing but there are challenges. Patients have a tendency to try to use this specialist clinic as their GP surgery, something that happens quite frequently in the UK too, and not all clinical problems are so easily addressed in that setting. There are logistical issues like taking blood from infants, which is better done by those with more practical experience. Another skill is learning to fill out details of the consultation on a variety of different assessment forms; this relates to which one was current when that patient began on ARVs and what stage they have reached in their treatment. Each has a slightly different format with different boxes to fill in. No two patients are exactly the same and all have their own unique problems, so like generic forms everywhere they are great as an aide memoire but can be cumbersome in practice. However it is the logistics of health care that are my main area of ignorance:- how far away the peripheral clinics are, how easy is it to travel to them, what does one do with the possibly moderately unwell patient who you would like a second look at in three or four days but who lives miles away – the wards as usual being full to bursting.
The first stanza of Auden’s poem ‘Leap before you look’ has been a recurring thought since the Zithulele expedition was still only at the planning stages; this is another instance when it seems very apposite.
The translators again demonstrate their value, reminding me, if I forget, that each person needs at least three different pieces of paperwork filled in. The system is really crying out for computerisation. Sadly health care and computing have often been poorly matched partners – ask anyone who works at Addenbrooke’s. But the remarkable setup at the Right to Care charity in Joburg where 600 patients are processed paperlessly every day, or the incredibly efficient fingerprint based method, pioneered by Dr Jan Pienaar at the Anglo Coal health facility which tracks patients (and staff) in real time continuously, both in the main hospital and at all the peripheral clinics, are two shining examples of where it really works. Investment in good functional infrastructure like this is never wasted.
Perhaps the most striking variable in this clinic compared to others is the attitude of patients to their care and their degree of involvement in it. Many of them are old hands and virtually run the consultation, often answering the questions before being asked. These are also almost inevitably individuals who are the most disciplined at taking their medication, reliably reminded by an alarm clock or mobile phone every day. The results can be spectacular. Some of the fit cheerful people I have seen there have been – according to their notes – wasted, debilitated individuals at death’s door when first diagnosed with HIV. They are now back living full lives. Understandably they are also very switched on about risk behaviour. This is how it should be, the doctor providing support to a person who has engaged with and is concerned about their condition and takes responsibility for their own health.
For a fair proportion the complexities of taking three different tablets in a slightly different combination twice a day, or even three once a day is more than a brain teaser. Their numerical skills may not always be great but more often it is their comprehension of the need to take a combination of drugs at such precise intervals that is the barrier. As I have said previously (‘Community outreach’) this sort of obsessional behaviour is not required for the usual run of the mill treatment course for many conditions, a few hours here or there or the odd missed dose matters very little. If you are taking analgesic medication, where the regularity does matter, then you are forcefully reminded by your own nervous system that something is overdue. Failing to take ARVs has no subjective consequence, other than the counterproductive one of reducing the side effects. The longer term disaster of the virus becoming resistant to the drugs is completely inapparent for many years. Well educated Westerners often struggle with it too so there is nothing unique about this.
For a very few people, here as elsewhere, it is all too much. These are the heartsink serial defaulters whose medication has to be changed and changed again as the virus becomes resistant, and then the options run out. When it really fails it is profoundly depressing, but there are often more complex pressures on people underlying the bad adherence; failure to share the diagnosis, external stresses from partners and unsympathetic family backgrounds and the like, so it can’t automatically be categorised as simple amnesia or recalcitrance.
For many patients the attitude to health resembles the relationship between the UK public and the NHS up until the last third of the twentieth century, one of acceptance of paternalism with no wish or expectation to have to contribute to decision making. ‘I’ll just do what you say doc, you know best’. In many cases there is no point in fighting this too hard. No matter what the preachers of health emancipation may tell us, some people just need (and want) to be told what to do.
At the other extreme there are one or two folk who have taken the health care consumerism message firmly to heart and are set on being totally in control. One young woman, quite smartly dressed and fluent with answers, and who probably does take her medication regularly, tells me that she doesn’t have time to have the regular blood check today. These tests are essential to detect drug side effects and to make sure drug resistance hasn’t developed in the virus. This can occur even with the most perfect of drug compliance. I tell her how vital this monitoring is and fill in the necessary forms for her to have her blood checked before she picks up her regular supply of tablets. She argues. I explain patiently why it is important and she agrees it is and still refuses. She stomps out. As I talk with the next patient I hear her voice shouting in the corridor. This petulance has obviously been a pretty successful strategy as, according to her notes, she has avoided blood tests for a very considerable length of time. Eventually the noise dies down. I discover later that Rona the estimable volunteer has patiently stood her ground and declined to give out the drugs until the blood tests are done. The girl has wasted a good twenty minutes arguing and eventually had the blood taken, which takes two minutes. It is pointed out to me in conversation with colleagues afterwards that perhaps it is a good sign that people are losing their passivity and taking charge of their health. Possibly so, but understanding what one needs to do to be in charge of one’s health and doing it sensibly is not the same as this sort of sheer wilful stupidity. In all probability it reflects some lingering element of denial.
The translators are also the HIV counsellors who take the patients through sessions preceding the initiation of treatment trying to make sure they understand exactly what the purpose is and why it is so important to take ARVs very regularly. They drill the patients with a set series of questions and answers. ‘What does the treatment do?’ ‘It suppresses the virus but doesn’t get rid of it’ ‘What does this do to the body’s ‘soldiers’?’ ‘It makes them increase and recover so I get well’ ‘How long will you have to take treatment?’ ‘All my life’, and so on. Patients also have to recognise their tablet types from a pile of random ones. This is not entirely straightforward since one of them comes in four different shapes, sizes and colours. They must also have a ‘Treatment Partner’ with them when they come to embark on therapy, to whom they have disclosed that they have HIV. This is their trusted buddy. Despite these hurdles it is a testament to the counsellors, and to the practical nature of the system that most people start treatment at the first attempt.
Sometimes the translator working with me, as today, is the one who counselled the patient in the first place. This can lead to some slightly tricky conversations if the patient hasn’t understood that we have to test their knowledge before starting treatment.
‘What do the ARV pills do?’ ‘You told me they suppress the virus’
‘What does this do to the body’s ‘soldiers’?’ ‘Why are you asking me? You told me what it does’.
The translator is visibly struggling and tells me the way that the conversation is going. I venture ‘Tell her that I want her to tell me what the treatment does for the body’s ‘soldiers’’.
This is relayed back and the reply comes ‘She says that since I know the answer and you wouldn’t understand her, why don’t I just tell you myself?’
This flawless logic can be difficult to get round but we eventually achieve our aim and she correctly picks the tablets out from a sweetshop pile of assorted ARVs. The abundant paperwork is completed and off she goes to collect her first prescription.
The next patient in is a young lad in a dressing gown. I will call him Sipho. I recognise him from the paediatric ward. His is a sad story; a mother who abused both alcohol and him and from whom he acquired HIV. He is short for his years, possibly contributed to by both of the latter, and by a tough deprived upbringing. Despite that he is a cheerful, alert chap with occasionally a slightly wicked smile flicking about the corner of his mouth (brief tip for the bored, try looking up synonyms of ‘wicked’ on Microsoft Word). He is about to start ARVs too. He is well drilled. He sits in the chair next to me and answers everything faultlessly. His is a life potentially wrecked by such an unpromising start, but is now in a state of possible rescue since coming to the hospital, although many problems remain. We go through the routine and I swivel round to fill in the paperwork on the desk. The next minute my world becomes unstable and I feel my seat plummet. I instinctively grab the desk which has shot up to meet me. What on earth….
I turn back to see that young Sipho has a particularly amused expression on his face. He has deliberately flicked the seat height adjuster on my chair and it and I have responded meaningfully to gravity. The translator is barely controlling her mirth.
Next in comes a Sangamo or traditional healer. She is coughing and looks to be walking with some difficulty. She tells us she was hit by a cow. Clinically she has a broken rib. She also has a fever and there are some noises in her chest suggestive of an infection. Her HIV medication is a routine for her; she is good at taking it and it is working well. I hope that her chest infection is something simple and not the first sign of TB. When I see her the next time it has pleasingly responded to the simple antibiotics I gave her. I wonder at the thought processes which must go on when she is plying her trade. ‘This medication is what you need to get better’ ‘This however is what I need’. The same mild schizophrenia pervades the ‘complementary medicine’ community in the UK who peddle their expensive bottles of water to the credulous public while getting vaccines, antibiotics and cancer treatments from the NHS.
The clinic eventually winds up very late. The war analogy I floated in my last post seems less than fictional at this moment.
In the HIV clinic (although not only there) what can sometimes come to mind is the legend of the little Dutch boy who noticed the leaking dyke and blocked it with his finger. As the hole grew he put firstly more fingers, then his arm and eventually his whole body into the gap to try to dam the water flow. Eventually he is discovered and the dam is repaired. He is proclaimed a hero for preventing his village from being inundated by the deluge which would have occurred had the dyke broken sooner.
We usually use the phrase ‘finger in the dyke’ to describe a temporary fix for something bad that is going to grow and grow and ultimately needs much more drastic action to cure it, commonly with the implication that this may not materialise. The HIV clinic gives one exactly that impression of having one’s finger in the dyke. It would be nice to envisage that the positive take on the story, the fact that the boy did eventually hold things together until proper help arrived, will also be the outcome here.
The real solution to the leaking dyke however is education. It is great to see people living normal lives on regular ARV treatment. it is good to know that even critically ill people with AIDS can now be brought back to health. The problem is not that HIV is untreatable; the ongoing tragedy is that young men and women (and old) are still getting infected. As a salutary example I added an extra question of my own to the pre-treatment grilling that one 28 year old had. She had answered everything perfectly. I said I was very impressed but had she understood about how you catch HIV before she actually caught it. ‘No’ she said ‘I only learned all this from the counsellors’.
South Africa has travelled a long way from the dark days of beetroot, garlic and lemon juice being recommended at governmental level for a disease that was pronounced as not being due to HIV. In educating its people however it would appear that it has in places barely crossed the start line.
In the UK we face a problem of treatment having become so routine and benign that the fear of catching HIV, at least in certain groups, has fallen. As a consequence risk taking behaviour is in resurgence. Here it is another educational problem, but a different one, which in addition has a cultural side to it, much of which revolves around gross gender inequality. A touchy subject for another time.