We make the short drive to the home of a patient that my Ministry of Health doctor tells me she is anxious to start treatment on as soon as possible. The patient’s flat is situated at the top of a 1984-esque Soviet-style concrete tower block, in a densely populated neighbourhood full of similar blocks. I am painfully aware that our arrival, in our signature MSF logo-adorned land-cruiser, will herald the neighbourhood knowing that there is a TB patient in their midst. MSF are only involved with TB care in Karakalpakstan and the local population do not refer to us as ‘MSF’, but as the ‘DOTS programme’, the World Health Organisation term for regulated TB care. The children playing in the courtyard suddenly forget their football to stare at us. Curtains twitch. Stood at the entrance to our patient’s block, I peer up into the dark, confined and under-ventilated stairwell. I decide that I do not want our risking entering without first pulling on our respirator masks. So we do so, in full-view of our onlookers. So now everyone knows.
We reach the flat of our patient, Aypara, which she shares with her son, daughter-in-law and their two children and are emphatically greeted at the doorway by her exasperated son, who leads us into her room. Aypara is in her 70s and it is immediately obvious that she is unwell and bed-bound. She coughs incessantly. I hold up her chest X-ray film to the window: her right lung appears to have been replaced in its entirety with consolidation (pus) and cavities (holes). She has had ‘chronic TB’ for eight years, due to a stream of inadequate treatments (too few drugs, for too short a time, taken inconsistently). As well as her TB, Aypara also has diabetes, often a lethal combination, and the two have a nasty habit of concurrently occurring here, presumably due to the disabling effect that high blood sugars have on the immune system.
Aypara’s two young grandchildren are delighted at the arrival of exotic strangers wearing strange things on their faces and speaking a funny language and excitedly jump on their grandmother’s bed and run around their parents, taking our photos on their father’s camera-phone. Aypara’s son finally loses patience with them and barks at them to leave the room. Unruffled, they continue their games in the next door room, ignorant of the ticking time bombs of latent drug-resistant tuberculosis lying dormant inside their little lungs that they must have inevitably acquired living in this household. In Uzbekistan, TB is commonly regarded to be a genetic disease, as it picks off members of the same family, one-by-one.
Aypara has had enough of her TB and is seeking definitive treatment. Patients know that presenting to the MSF programme dictates 20-months of regimented care and the publicity that accompanies being on DOTS [directly observed treatment, short-course], so some will try non-DOTS alternatives first, until they are finally desperate enough to present to us, often by which time the drug-resistance of their TB has ‘amplified’.
Of course we will give her treatment but, I explain, it will not work if she chops and changes. She promises me yes, she’ll stick to DOTS.
And I hope she will. I really do.
However, no new drugs for TB have been successfully developed since 1968 and the current regimen is unimaginably difficult. After patients have taken the medications for a few months they start feeling better from their TB and this tends to coincide with the cumulative impact of the drug toxicity, side effects kicking-in and also their being worn down by the daily chore of taking fistfuls of drugs under supervision. And this is when patients tend to ‘default’.
Aypara’s initial laboratory results show that her TB is resistant to rifampicin and isonizid, so I know we need to start her on, at the very least, treatment for multi-drug resistant TB (MDR-TB). But the results of the resistance pattern to second-line drugs is not yet available, so I attempt to assess the risk of this by asking her about her previous treatments. If Aypara has taken any drug for more than one month, her TB is now liable to be resistant to it and we will have to ‘reinforce’ her regimen. Aypara rattles off all the first-line drugs in various combinations, but then says yes, another doctor gave her the second-line kanamycin injections for about 50 days. I’m disappointed, but not surprised. Uzbekistan has a poorly regulated drug industry and kanamycin is easy to purchase and readily dished out by people lacking in training in modern TB care. Aypara’s TB may well be resistant to kanamycin and this will further reduce the arsenal of drugs we have to treat her.
But what about fluoroquinolones, our best other pharmaceutical weapons against drug-resistant TB? Has she taken any of these previously? Murat, my translator says no, it is impossible, she cannot have, as these are not readily available here. But on my insistence he asks her. From beneath her mattress Aypara produces a shopping carrier bag full of drugs. I pour the small pharmacy of silver blister-packs of tablets onto the floor and leaf through them: anti-histamines, aspirin, diabetic tablets, blood pressure tablets, pain killers…fine, fine. And then a chill runs down my spine and, muffled by our masks, Murat and I let out a collective sigh: strips of tablets with ciprofloxacin (a fluoroquinolone) stamped on them. We are now potentially dealing with extensively drug-resistant TB (XDR-TB), and her chances of achieving cure are plummeting.
And for what? How has Aypara got her hands on these drugs, seemingly banded around like Smarties, when this is ultimately to the detriment of patients. Is it for lack of knowledge on the prescribers’ part? Is it that patients do not want to be on DOTS, because of the associated stigma, and therefore put a lot of pressure on the prescribers to give them an alternative. Maybe everyone is looking for a quick fix? All I know for sure is that we cannot truly tackle the problem of drug-resistant TB in former Soviet states until there is greater prescribing regulation and the pharmaceutical industry cares to bestow upon us some new more efficacious, less poisonous drugs.
It is agreed that Aypara will start on DOTS in the next few days. I go to shake her hands and say to her in English repeatedly ‘you will be okay, you will be okay’, I think because I want to reassure her and myself that she will. She grasps my hands in hers and kisses them and thanks me again and again. Then, still holding my fingers with her left hand, she places her right hand over her heart, and I mirror her gesture, a sign of respect. But really this is just a sign of the truly desperate nature of this TB epidemic.
*Names have been changed