For the first time since I’ve arrived in Karakalpakstan, and I suspect the last, the weather is unexpectedly and strangely reassuringly reminiscent of that from my home of England. It’s six degrees centigrade, the ground is wet and littered with still puddles and the sky is grey and overcast, like a giant duvet wrapped over me – an odd source of comfort in this foreign land. Spring is finally upon us. Tomorrow is Nowruz, Persian New Year. This Sunday, 24th March is World TB Day. A little prod to the international community: do not forget us, things are desperate…we are desperate.
My nurse, counsellor, translator and I make the long drive to our district of Shumanay. Today we are venturing into the Shumanay Tuberculosis Inpatient Department (IPD) for the first time proper, to begin the almighty task of trying to test and treat all if the TB patients in the district. Our programme’s architect and mastermind, Philipp, visited us in the field last week. ‘You cannot save the world,’ he told me one evening over a beer, ‘you can only try to make it a slightly better place.’ The IPD is as good as any a place to start.
We pull into the stand-alone TB IPD compound. It’s a shabby one-storey block that almost looks derelict, with, bizarrely, some kind of muddy pond with viewing shack in front of it. Not satisfied with TB, is the plan to try and breed cholera too? We climb out of the car and gaunt, blank faces with black backgrounds stare out at us through the curtainless windows, like someone has recently visited with a ‘Hope-Hoover’. A tiny, very handsome, chocolate-coloured puppy with bright blue eyes and splashes of white on his muzzle scampers up to me. He is just a baby, clearly homeless and is asking for love and food scraps. My new translator, Yesemurat, is fiercely protective of me and clearly familiar with the pathetic compassion of female aid workers: ‘Don’t stroke him, you don’t know what infections he’s got’. True. But then who is not infectious amongst us here? I am currently snotty and sweaty, awash with some upper respiratory tract virus, and my colleagues edge away from me when I accost them in our office corridor.
The patients awaiting my arrival inside are so brimming with deadly, almost impossibly hard to treat mycobacteria, they could be used as biological weapons. I see a flash of the puppy’s belly, which is sporting a large crop of mange. In another life, born in another country, this puppy would have been spoilt and loved, with a gleaming coat and expensive veterinary fees. Born in different circumstances the waiting IPD patients could have been teachers or nurses, proud parents, the productive little consumers of which western governments are so fond. They just got unlucky. Puppy and patients alike, just born under the wrong stars. Dealt a lousy hand. I’m in a ghetto for unlucky souls, infected, infective, cross-infecting each other. Socially unacceptable and stigmatised. A Monty Python scene plays out in my head, where victims of the black-death are cast onto a wagon and one cries out that he’s not yet dead. Well they are not bloody dead yet! So I go to work. I snap on my mask, stride in, throw my stethoscope round my neck, open all the windows, chuck my bag in the corner and greet my new brother-in-arms, Ministry of Health doctor Tileubergen, thoughtful and knowledgeable, but until now virtually resourceless. ‘Let’s start with the sickest first and work our way through.’ I say and he nods.
Virtually all the inpatients have had TB for around a decade. They’ve dabbled with this and that TB drug, that has saved them from dying, but they have never had proper, full, appropriate treatment so have not been able to recover. They have been held in purgatory for years. Each story is the same: whenever they get sick with fevers, wasting and coughing-up blood, at least once a year, they are admitted for three to six months to this cesspit holding-bay, and are stuck on whatever TB drugs are available, sufficient to pull them back from the brink but never enough to cure them, and all the while driving their TB to become more and more resistant. Not to mention the cross-infection problem that accompanies housing TB patients communally.
Alisher is the first to sit opposite me. On first glance he looks okay. Then I realise he is wearing five loose tops and jackets on top of each other, which artificially exaggerate his bulk. He is severely wasted, a bag of bones and just walking into the room leaves him gasping for air. I meticulously pick through his history. He’s had a bit of everything, years of first line-drugs interspersed with a splash of second-line drugs when he’s managed to scrape the money together to get to the capital. He is going to be really tricky to treat. I ask how he got his TB and if his family are supportive of him. He tells me his family wanted nothing more to do with his brother when he developed TB in 2005, so Alisher loyally and single-handedly cared for him, until he died. And then Alisher too became sick with the TB, so his family now want nothing to do with Alisher. This institution is now his only home. I tell Alisher I think he’s too sick to wait long, I’ll get my nurse Sarbinaz to drive his sputum to our laboratory in the capital now, so we can get a resistance pattern and get him onto the right regimen as soon as possible. But I warn him the path ahead will be tough and I predict he’s going to need at least two years of committed treatment. I cannot promise him it will work, but it’s the only chance he has got. ‘Whatever you think is best’ he says expressionless. Alisher is clinging onto life but clearly let go of hope a long time ago. After I have finished examining Alisher, Kural my counsellor sits and gently talks with him, and Sarbinaz shows the MoH nurses how to collect his sputum and take his blood, a little conveyor belt of care.
Next is Gulnara, her lungs are full of TB, and again, given her drug history, I fear she may be extensively drug-resistant. She pleads with us: those two months of Kanamycin injections were seven years ago, so long ago, surely that will not make a difference now? But TB has a nasty habit of remembering these fleeting events. Gulnara then tells me she has also severe pelvic pain for months. She’s shaking and appears on the verge of crying throughout the interview and stares at the floor. My translator is male so I am torn between needing to ask her personal questions and causing her further shame and embarrassment. I usher the men out so I can examine her and as the door closes and we are alone together she suddenly blurts out a stream of sentences, presumably all of her symptoms all her worries, desperate to confide in a female doctor. But I’ve barely a word of Karakalpak so I am helpless to know what she is saying. I make a mental note to source a female translator for my next visit.
And so we proceed, patient after patient, one-by-one, Tileubergen and I. We document each history, listen to crackly lungs, feel rubbery lymph nodes, pour over X-rays and discuss each case in turn - what we will do, a strategy for each patient. Rumours in the community about a new doctor with new tests and treatments has smoked out other ‘chronic TB’ suffers from the area, who hover outside waiting to be seen. I am in my element. Doctors only ever feel truly at home neck-deep in pathology, problem-solving and trying to fix people. At the end of the day, tired but satisfied, we fall out of the IPD and pull off our masks. The boys hungrily smoke cigarettes and I, ignoring Yesemurat’s pleas and protests, pet the little puppy.
I lie awake that night unable to sleep, running over the abundance of things I need to do in my head. A knife hangs poised over these patients. For many of them our treatment is their last chance saloon, if we get it wrong, miss a trick, let them fall off the wagon, then they are back on the death-cart. I ponder the logistics of getting a mite-infested canine from a rabies-endemic state to my mum’s flat 3300 miles away. But burning myself out is not going to help anyone, and finally I allow myself to drift off to sleep.
Sunday 24th March is World TB Day. So, Happy TB Day to you. The MSF Access Campaign (our compatriots, pressing for action and new life-saving drugs) are marking the occasion with the launch of the TB-manifesto, a joint plea from patients with drug-resistant TB and their healthcare providers, myself included, pleading for better treatments for this deadly disease.
The manifesto lists some pretty sobering facts: it currently takes 14,600 pills to treat one patient with DR-TB, stood end-to-end, the equivalent to the height of the Golden Gate Bridge. 81% of people with DR-TB don’t get effective treatment, and of the 19% that do only half are cured.
We need better treatments now.
Please read the manifesto at http://www.msfaccess.org/TBmanifesto/, please show your support. Please, for Alisher, for Gulnara, for all the other patients in the Shumanay IPD, for the three-hundred other chronic TB patients in the district, for the half a million of cases round the world, for me. You cannot save the world. But you can try to make it a slightly better place.