We came across this headline last week in the UK national newspaper the Daily Mirror.[i] Naturally it drew our attention, and (along with raising our eyebrows...) it’s raised such important issues for us that we feel we must discuss the scale of iniquity that this report inadvertently highlights.
The story reveals how 64-year old Margaret Pegler, long-time resident of Welsh village Llwynhendy in south-west Wales, died of TB last autumn at the age of 64. Her family are angry (which was the reason the story was published) because they reckon that she died because the signs of her illness were missed until it was too late.
They may be right – but the truth is that TB in Wales is so well managed and now so unusual that doctors really aren’t that alert to it.
Sixty years ago which may well be when Margaret Pegler was originally infected with the disease (with it remaining in sub-clinical latency for the last six decades before breaking out in the last years of her life) this certainly wouldn’t have been the case. There would have been plenty of TB in circulation back then because Llwynhendy still had a mine and mining is so high risk occupationally as far as TB is concerned. In fact it would have almost certainly been the FIRST thing that doctors in the village would have considered when presented with a patient with a persistent cough and night-sweats simply because of the frequency in which they were encountering these tell-tale symptoms.
But this wasn’t what raised our eyebrows – it was the Mirror telling us what has been happening since as a result of this death in the community. The paper reported that: “Health chiefs are now carrying out up to 700 [TB] screenings”, adding that “Public Health Wales … also urged customers and employees of the Joiners Arms, in Llwynhendy, South West Wales, between 2005 and 2018 to get checked.”
Villagers queuing up to be tested for TB in the Welsh rain
Given this amounts to a thirteen year period, plainly they think that Mrs Pegler liked her local, although her family deny she was that much of a regular at the Joiners Arms.
When seen from a more global perspective, however, what this response reveals has nothing to do with anyone's drinking habits: it amounts to a rigorous response to a public health threat by the local health authority – and what's more, it’s one that is entirely appropriate and responsible. Mrs Pegler was most probably infectious and, given that they want to test the pubs regulars from so many years ago, it sounds like they think she may have been infectious for over a decade.
With any dangerous infectious disease, it’s absolutely vital that proper ‘contact tracing’ is conducted to identify and test all those who may possibly have been infected, and then treat them accordingly. TB works slowly, so doing this can help get the local public health service well ahead of the disease even if the original infection really did only reactivate and become infectious ten years ago. In fact, according to this same report, 29 cases have now been identified in the village (though it doesn’t note whether these are latent or active cases or whether they drank in the pub).
We’d suggest that the likelihood is that their infections are thankfully still latent and therefore neither infectious nor active, and so they pose no immediate risk either to themselves or to their own network of close contacts. Furthermore their latent infections will be satisfactorily cured with the administration of a single antibiotic for several months which would remove this risk entirely.
So, to summarise the story, this outbreak of TB in a sleepy Welsh village will most probably have already been stopped in its tracks - though we’re sure it will be talked
about for many years over a pint at the Joiner’s Arms.
But what does this story tell us about TB management elsewhere?
It’s actually what this story doesn’t tell us about TB management elsewhere that is so arresting. This is because we don’t know of a single high burden TB country that uses contact tracing as a way of managing its epidemic, simply because it’s beyond their capacity to do so despite it being logically the most obvious way to contain TB or any other infectious disease.
In fact, since TB was formally declared a global emergency by the WHO in 1993, such contact tracing (the simple finding and testing of those known to have been in close contact with infectious individuals) has never been officially recommended as part of the global response. And it’s almost certainly as much because of this abject lack of a joined-up response as any other mismanagement and neglect, that TB remains out there at such scale, currently infecting 10 million more every year and killing one in six of them (or around 5,000 every day).
The success of this preventative contact-tracing strategy is plain and evident in the most recent report on TB in Wales, which reckons that the rate of infection in this tiny country is just 3.2 cases per 100,000 each year[ii] (making it one of the lowest in the world).
Map of Wales showing regional variation of TB incidence
This incident rate is still over 500 cases per 100,000 in high incident countries like South Africa and the DPRK, incidentally, where little or no contact tracing is conducted. But what’s more, TB has roughly halved in Wales in the last ten years. This strategy is still working!
Culture confirmation of disease
Of extra significance, it turns out that for the last year for which data is available, 82% of those diagnosed with pulmonary TB disease in Wales (i.e. TB in the lungs and therefore most probably also TB that is dangerously infectious because of the patient coughing) were recorded as having been ‘culture confirmed’. This designation is crucially important for reasons explained immediately below.
(Wales exceeds the European Centre for Disease Prevention and Control (ECDC) target of 80% in this respect, by the way)[iii]
The reasons this is important is because ‘culture confirmation’ automatically includes testing the mycobacteria for resistance to Rifampicin and Isoniazid, the two strongest anti-TB drugs (with confirmed resistance to both together designating an infection as being MDR or ‘multi-drug resistant’ and a whole different ballgame). This culture confirmation is also called ‘drug-susceptibility testing’ or DST.
Given that this drug-resistant sub-epidemic is so challenging, so lethal and so expensive to treat, it’s absolutely vital that every single case that is drug-resistant anywhere is found and treated as quickly as possible i.e. before the disease gets so out of hand that it’s beyond control. And as far as we can tell, no MDR-TB cases were recorded in Wales for the last year on record.
Let us explain why this is so significant: in contrast to Europe (and its target of 80% of all pulmonary cases being culture tested for resistance to the two main drugs), in the Majority World (where most TB exists) culture testing almost never happens. In fact the WHO don’t even report on this any more. (They used to). They’ve defaulted in their aspirations to an easier and cheaper test that can at least test for resistance to one of the drugs but even this is only used under limited criteria in high burden countries (with the laudable exception of South Africa, incidentally, where it's now being used on all cases).
What this means is that drug-resistant TB is still being hopelessly mismanaged, unaddressed and under-estimated. Let Dr Jennifer Furin (a world expert in MDR-TB) explain this mismanagement in better words than we will ever do:
The TB community has been debating for more than 20 years whether or not we need access to DST; we have given up on this, concluding it will be “too complicated.”
Dr Furin explains the background to this conclusion:
The field of TB has been grossly under-ambitious and has for decades tried to do the minimum possible and see if we can get away with it. This approach has clearly failed.
Endlessly repeating the same failing policy is never going to see the end of this disease. Surely what is seen to be right in Europe (and works in a small country like Wales) is equally right anywhere? But it must be absolutely vital wherever there’s most disease?
What’s good enough for the good people of Llwynhendy is surely good enough for all of us everywhere!
[ii] Tuberculosis in Wales Annual Report 2018. http://www2.nphs.wales.nhs.uk:8080/CommunitySurveillanceDocs.nsf/3dc04669c9e1eaa880257062003b246b/95313461c3435a7a802583140029706e/$FILE/Wales2017AnnualTBReport_KeyTrends_v1.pdf
[iii][iii] European Centre for Disease Control and Prevention (ECDC), Progress towards TB elimination, 2010. http://ecdc.europa.eu/en/publications/Publications/101111_SPR_Progressing_towards_TB_e limination.pdf