The white plague
“I forgot to put a place to tick ‘dead’ on this form” I said to my darling the other day. One of the nice things about being here is sharing an office with my husband. It’s nice for me, anyway. “Baby, that’s not the sort of thing you say” he replied. I’m a nurse and for me death is a clinical reality that has been a part of my working experience for over 10 years. I’m under no illusions about it and deal with it as such. But he had a point, it’s hardly polite conversation. For him, the realisation that he’s building a hospital in the middle of nowhere, and that children die in hospitals, is confronting. A few days ago a little one died of TB malnutrition here. The family had taken her to the witch doctor when she got sick, and relied on his skills for many months before, as a last resort, bringing her to hospital. It was too late. The mother wailed loudly, supported by another woman, as a nurse carried the small corpse of her child, wrapped in a sheet, to the canoe. Matt and I both witnessed the anguished procession; such things are not hidden away.
I was working on an admission to discharge form when I made my comment to Matt. The new form is a round-about way of fighting tuberculosis, the disease of poverty that is so affecting this place including the small girl who died far too soon. Much of what I am doing at the moment is about tuberculosis one way or another. But it’s a strategic battle and this morning it saw me doing data entry on a huge pile of hospital records. The new admission to discharge form is aimed at ensuring that staff collect all the information we need in order to be able to retrieve their records at a later date and ensure that we have the best possible chance of following patients up in the places they spend most of their time. It’s also about clearly recording final diagnostic and referral information for statistical and research purposes, and prompting staff to consider broader nursing roles like patient education. It sounds interesting, but data entry is about as interesting as watching grass grow. The hospital records themselves, however, are revealing. By my estimation fully one third of the records relate to TB and most of these patients have either a personal or family history of TB. A few have even been in treatment before. I’ll tell you the exact numbers when I’ve got up to date with data entry. I’m starting from the first of January this year, but there are already plenty of new TB cases to join the malaria and skin infections.
Tuberculosis is a bacterial infection that is spread by coughing. TB often infects the lungs and this is the type that is contagious. It can also affect a range of other sites in the body, commonly the spine, glands or abdomen. It is one of the oldest diseases known to humanity and has coexisted with us since our earliest days. It’s a fascinating disease that has unusual mechanisms that make it incredibly difficult to eliminate. It can remain dormant for many many years in hosts who may show no symptoms then suddenly become active again. It can slow down and speed up its growth rate and has a thick, almost impenetrable fatty cell wall giving it great advantages in avoiding elimination by the host’s immune system. It has been called the ‘perfect disease’ because it kills neither too quickly nor too slowly and so gives itself the maximum chance of being transmitted. Its slow growth rate makes it difficult to differentiate one strain from another. Where facilities exist to do so, ie not Kapuna, it takes long weeks in a laboratory to culture and to check sensitivity to antibiotics, by which stage most people have already begun treatment, with either the right medications or the wrong ones potentially adding to the drug resistance problem. Until the discovery of antibiotics in the 20th century it was almost always fatal. ‘Consumptives’ died of massive lung infections, coughing up blood. While the poor have always been disproportionally affected, even the very rich were not immune. Novelists wrote tragedies about young lovers separated by the death of one, cut down in his prime, dying dramatically of the white plague. Such novels echoed their readers’ experiences. Then along came streptomycin and that changed everything.
These days tuberculosis is treatable or at least most of it is. The science is not new; it evolving, certainly, but not new. We have been waging the war on TB for many years now and in the developed world it is rarely seen. Effective TB treatment relies on courses of four or more antibiotics given over a minimum 9 month period. Unfortunately, there have been no new antibiotics for TB developed in the last 40 years. In the meantime, HIV has emerged, particularly in sub-saharan Africa. HIV/TB co infection makes up as much as 50% of all TB in some areas. And in other areas less affected by HIV, like the Gulf Province, geopolitical factors have meant an explosion in the rates of TB. These days there are acronyms for types of TB, explaining their drug resistance patterns. There is regular TB which, thankfully, is still 90% of the TB we come across here in the Gulf, but increasingly we are seeing MDR-TB, which is resistant to one or two of the usual antibiotics used for treatment. Elsewhere in the world, in Swaziland for example, they’re now seeing XDR- TB which is extremely drug resistant. The first cases of TDR-TB, totally drug resistant TB, are being documented in medical literature. The spectre of the post-antibiotic age casts a deep dark shadow over not only places with high rates of TB, like Gulf Province, but the rest of the world as well. TB is the perfect disease and if it’s not eliminated while we still have antibiotics to treat it, it’s only a matter of time until it becomes endemic worldwide, as it once was. All of which brings me back to the data entry I was doing this morning.
In order to be able to kill the enemy, we need to get it in our cross hairs and keep it there long enough until we can fill it full of our metaphorical bullets. We need to be able to find the tuberculosis and keep track of it. Some tuberculosis patients are in then hospitals receiving their cocktail of drugs, but other sufferers are still in their villages hacking away in dark corners in the night as they lie next to their children and grandchildren. They’re at their fishing camps, their sago places, they’re paddling down the river to visit their relatives, all the time getting skinnier and skinnier. We need to get these people in to a health centre. But the health centres are few and far between, a long way to paddle to get symptoms checked that have become normal to the patient.
We are pretty good at diagnosing and treating TB here in the Gulf, so we can stop sick people being sick most of the time. But on the other hand, everyone knows TB symptoms can also be caused by sorcery. Getting a local sorcerer to put a counter spell on whoever cursed the symptomatic person is at least as intuitive as seeking health care for many village people. It’s also far more appealing than taking handfuls of medicine with side effects each day for 9 months, three months of which must be taken at a hospital far from their homes, their relatives who support them and the gardens that sustain them, and under the strict observation of staff. That any seek treatment at all is a triumph. Eventually the weight loss and night sweats become too much, the symptoms undeniable and they come seeking help.
One they have been diagnosed patients move to the TB ward. Those with active pulmonary TB have single cubical just big enough for a raised platform for a sleeping matt and floor space for a few belongings. It’s tough being a TB patient. The mask they have to wear outside their cubical singles them out as TB sufferer and there is an understandable level of fear associated with the disease. Relatives accompany patients on their journey to hospital bringing canoe loads of coconuts and sago to feed them through the treatment process, some willing to work as labourers to earn some cash during the long wait. They sleep elsewhere. For the patients it’s hard to keep taking medicine when it makes your knees hurt, when it makes you nauseous. One of the drugs for MDR-TB can cause permanent hearing loss. Even a standard TB treatment regime is a lot for a body to take, and this far from anywhere there is no way to monitor kidney and liver function to check that the organs responsible for clearing the drug are able to cope with the assault. It’s unsurprising that many think the cure is as bad as the disease.
After the 3 months of the intensive phase we send them back to their places with a bunch of pills and hope that our ‘education’ has worked and that they take them all as instructed. Their yellow card gets filed. Theoretically, when we go on patrol to the patient’s village we follow up and check that they’re still taking their medicines, encourage them, answer their questions, check out their relatives for the disease and try to make sure that it hasn’t all been in vain. But the cards get forgotten and we don’t know what their plan is, or the cards are left behind in the village when we leave. Village TB volunteers are trained to help with case finding and referral, but after training they don’t hear us or see us. They’re not always respected in their villages and their basic level of education means some struggle to interpret what their scales are telling them about a patient’s weight compared to earlier in the year. Sometimes villages aren’t aware the patrol is coming and when we get there patients or volunteers are out in their gardens or they’ve gone fishing. Sometimes the patients simply aren’t where we think they are, or they’re there but they’re use their husband’s name in that village rather than their fathers. So many things can stand in the way of our follow up and, without follow up, our chances of our patients completing their course and getting free of TB is that much slimmer.
The fight against TB, against an enemy as old as humanity, is a long one, but it’s one I’m passionate about. I believe the first steps involve getting the basics right. I believe that it’s about having accurate information and ensuring that it is at the right place at the right time. It’s about sending letters ahead with lists of follow up patients. It’s asking the right questions of our patients. It’s about using supporting village volunteers to be our eyes ears and mouth when we’re not there, which is 99% of the time. It’s about supporting them in case finding and making sure they have the fuel to get suspects to hospital. This is a fight I am so ready to take part in. I’m in the right place at the right time with the right skills. I’ve read and thought, and now it’s time for me to do my little bit. It’s time to close the information loops and take all the good work that has been happening here for so very long to the next level. I just hope I have enough time!