I spent some time with Dr Nilufar today, who I really like and respect. She was holding a clinic at the Service Centre operated by my NGO where ARV was prescribed and dispensed. This was made possible as throughout the previous month each and every one of our 600 odd HIV positive members from all over Bangladesh visited an Army hospital in Dhaka for a CD4 test. A pretty monumental event in itself, this activity had come out of a UNICEF initiative announced during a meeting I attended only six weeks ago, so it was really heartening to see action taking place so soon.
CD4 testing hasn’t been readily available in Bangladesh, partly due to lack of suitable facilities, a shortage of qualified lab technicians and partly cost related. Most CD4 referrals were as a consequence of clinical diagnosis and therefore too far down the line to be anywhere as effective as they could and should be. This is certainly not helpful when trying to sustain what can be the fairly fragile health standards of some of our HIV positive members. To add context, the vast majority of the population of Bangladesh don’t enjoy particularly good health, being vulnerable to all sorts of problems ranging from chronic diarrhoeal diseases to TB.
Starting ARV is both a big decision and a major commitment. Once treatment is underway it continues for the rest of your life, not only that but maintaining consistency is paramount as effectiveness is seriously impaired if taken erratically. This is what creates problems for HIV positive drug users. Typically people in Bangladesh receive ARV after presenting with clinical degeneration,not ideal or typical in most other parts of the world. By this time the individual is already weak and with a low white blood cell count is vulnerable to opportunistic infection. Things become compounded when illness further reduces a typically low wage, and with little money they become reliant on family members for support. The sad truth unfortunately however is, that due to stigma, fear and discrimination most find themselves disowned and homeless.
Dr Nilufa explained that everyone had to be tested in batches over the past month. She gave me an example of how important CD4 testing can be through the story of a ten year old positive child who’s result whose result led to prescribing ARV. Within fourteen days his health greatly improved and he has even put on a little weight. Without this test his count could simply have continued to drop, possibly resulting in future complications. Not knowing the white blood cell count Dr Nilufa is restricted in her ability to prescribe ARV as not only clinically but financially criteria need first to be met. The drug itself is currently funded by the World Health Organisation but there are oly two options available to her: a double or triple combination. The double combination is used for those who contract TB, which is the biggest killer of people living with HIV/AIDS in Bangladesh, as one of the triple combination drugs reacts badly with those used to treat TB. Normally a six month recovery period is doubled for a HIV positive patient, if in fact they make it through at all.
Things weren’t going smoothly and the stifling heat didn’t help. We left Dr Nilufar’s office and walked together to the patient’s reception area where our members waited. Although the clinic had finished and all had prescriptions ready, the ARV hadn’t arrived causing all proceedings to grind to a halt. Having been in Dhaka city for two days everyone was keen to return to their villages and worried that they would miss their transport home. Most had journeys of nine and ten hours in battered, old and dangerous vehicles that frankly wasn’t fit to be on the road. Being Bengali New Year only added to the pressure with roads crammed fuller than usual. Vehicles pass slowly by with many people squashed inside, more sit up on the roof and others even stand on the back mudguards holding on tightly.
Amongst the members I spotted a man lying on a gurney. He looked shockingly thin and very weak. I asked Dr Nilufa, who told me he was a TB patient sent over from the hospital during the afternoon for a HIV test. Fearing exposure of infection to TB, I must admit my first thoughts were for myself. But I quickly realised he posed no threat, surrounded as he was by people, most of whom were HIV positive. It appears he spent the last five months in Dhaka’s TB hospital without showing any signes of improvement and had been referred to my NGO is it was suspected that he was HIV positive. Sadly this proved to be correct as his status had just been confirmed. Dr Nilufa immediately prescribed ARV, but even with this benefit still expects his recover to many months. With all other treatment on hold to allow him to gain a little strength and weight I’ll keep a lookout and monitor his progress in future clinics.
A further hour passed and levels of restlessness increased. Apparently it used to be like this every month when ARV was dispensed making everyone tense each time they attended a clinic. Things have stabilised somewhat since then and over the last six months the supply has improved greatly, so this delay took everyone by surprise and wasn’t at all expected. I decided to walk back to our head office which is only a couple of minutes away to find out what was happening and see if things could be moved along a little from there. One of the nurses accompanied me. On arrival it became clear that the delay was caused by some kind of documentation inconsistency which had failed to meet strict regulated standards, (Bangladeshis are meticulous about paperwork), and so letters of authenticity were being hurriedly written to try to bridge the gap and enable the drugs to be released.
Eventually the drugs were produced and both the nurse and I took a large bag each and hopped into a rickshaw for the short journey back to the service centre as the heat and dust had worn us out. We arrived there the very moment the electricity cut, so knew we’d be sweltering for at least an hour before it was back on again and the ceiling fan would cool us down. I sat with our two nurses in the dispensary as I wanted to see how the process was managed. In the main things moved fairly smoothly and some people, especially the women tried to communicate with me asking questions: Do I have a husband? Where was I from? Some addressed me directly but other questions were put to me through the nurses and I was amused to hear one of them saying I came from New York!
Everyone presented Dr Nilufa’s neatly written prescriptions with an official looking stamp in the top right hand corner. Then they signed for their drugs in a huge red ledger…even the smallest newest member, a four year old boy who wrote his name in wobbly letters guided by his mother. I applauded when he finished…and although he was delighted his shyness overcame him and he hid his face in his mother’s long black robe.
It wasn’t until the very end of the process when the last two women presented their prescriptions that things blew up, and by this time I was so hot and exhausted I was nearly falling over. I don’t know what the problem was, perhaps their paperwork wasn’t correct, but one thing was for sure, they wouldn’t have been left without drugs, my NGO would never turn anyone away. But some kind of problem had occurred and almost immediately voices were raised…and I mean raised. Even in normal everyday conversations you hear Bengalis talk loudly and quite forcefully over each other. It always sounds fairly aggressive and quite argumentative when actually it often isn’t at all. Myself, I love the passion behind it, but this time, well it was all pretty full on, and didn’t look as if it was going to settle down anytime soon! As a passive observer with little grasp of the language at the best of times, let alone at this speed things seemed to be going around in circles and at one stage I felt as though I ought to put an stop to it and try to guide them to some sort of conclusion. I was at the point of intervening but not really appreciating what it was all about and as the nurses seemed to be holding their own I felt perhaps it wasn’t right for me to do so, at least not quite yet.
Then one of the nurses turned to me and asked me to visit the Infectious Diseases Hospital…right out of the blue. I informed her that I had done so, but for an awful moment I thought she wanted me to hop in a CNG and whizz over there right away and I nearly collapsed with relief when I realised that this was not the case! I would have done of course had it been necessary but it would have been a real trial in those conditions. Perhaps there are some issues over there that she thought as a bidesi I might be able to sort out? Anyway she plunged right back into the fray and I sat back passively on the sidelines again sweating buckets.
Once again she turned to ask me if I could read out loud some of the items on the prescription, and for a moment everyone settled down remaining quiet while I did so. I slowly and clearly read out the names of all the drugs indicated and when I was finished everyone also attempted to pronounce them. And then…we were off again for a further ten minutes.During this time the kitchen maid appeared carrying a tray with a cup of sweet black tea and a glass of water for me. I was really grateful for her kindness as I was seriously in need of some liquid by now having drunk all of my own. And at last, as suddenly as it had started everything seemed to calm back down. I was so relieved, but that’s one of the main problems with having such a lack of language skills, you can’t always sense where you are with things. I intend to get to the bottom or it though by asking my colleague Bishwajit to act as my translator and to have a conversation about it with the nurses as I believe it’s really important for me to understand exactly what the issues were.
As interesting as it had all been I can’t pretend it wasn’t a relief to lock up the Service Centre at the end of what had been a blisteringly hot and gruelling day.Then the four of us, two nurses, the kitchen maid and myself walked slowly back up the dusty road together to our head office on Auangajeb Road.