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World TB Day (minus 3) - It's time to take childhood TB seriously!

In three days time it's another World TB Day, and the Stop TB Partnership has (as usual) developed a punchy strapline for the day.

This year it is: "World TB Day 2019: ‘It’s time to…"

Basically we’re each being invited to complete this sentence as we see fit and then put it out there..

So we’ve thought long and hard about we can best end this sentence. Our first and simplest suggestion? It's just – It’s time to end TB!

That’s certainly a great idea by anyone's standards.

Or maybe (after we'd thought some more) one a bit more focused on our own dire concerns:

- It’s time to get to grips with MDR-TB.! .

Or maybe (from the particular perspective of our own work) this one?

- It’s time to get the next moxa /TB study underway (this time looking only at the recovery rates of MDR-TB patients using moxa with their drugs compared to those with only drugs).

That one’s surely up our street, but frankly it’s a bit of a mouthful - and anyway, our current visit to Angola has shifted our perspectives a bit, so here’s our completed sentence for 2019:

- It’s time to start taking childhood TB seriously!

Let us explain why we've chosen this first of all, by putting this appeal in a little perspective:-

The sorry fact is that until 2012 the WHO weren’t even developing and publishing estimates of how many kids got TB globally each year! Why not? Certainly it wasn't because kids weren’t getting infected: in fact they surely were in vast numbers (and what’s more children up to five years of age are the most vulnerable of all to this disease).

So maybe it was because kids recover more easily and survive?

Please… (because they certainly don’t recover more easily) – in fact with kids this infection often passes straight through from their lungs to find a home in other internal organs. (We've seen one today, for instance, with TB in his peritoneum - and what's more this fourteen-year old was being treated improperly with only one active TB drug when it should have been at least three to reduce the risk of stoking drug-resistance in his infection). His case is not atypical - with kids the bacteria find places in the body where it’s not more difficult to diagnose – it’s also more lethal (try TB meningitis, for instance, which has a high frequency of neurological sequelae or mortality) and needs to be quickly treated in hospital with overall treatment taking 12 months.

Here's a picture taken by our friend Joost De Raeymaeker in Angola. It's of a kid who was saved by Mae Madalena here in the shanty town in Luanda, Angola (that's Mae Madelena on the left - she's rescued over fifty abandined kids and does all she can to see them grow up healthy and with an education). The picture was taken here in Luanda two days ago. The little guy had been found abandoned with meningitis. Frankly it's a miracle he's survived.

The truth is that the reasons these millions of kids were being officially ignored and neglected was simply because they generally aren’t infectious to others. For years they basically didn’t matter to the global authorities (despite being the most vulnerable cases and quite probably the most likely to die from the disease) simply because they were judged not to be contributing to the disease burden by coughing! (The vast majority of TB is transmitted by coughing by an infectious case - and if the disease isn't in your lungs you basically don't cough. It's that simple, and also that awful.

Please someone, tell us that this summary is unfair! Please believe us: we would so love this conclusion to be wrong.

So how about today? How are the kids doing now in 2019?

Kids with 'ordinary' TB

Well, at least kids are appearing on the disease burden tallies now (though only up to a point as we'll explain).

Current WHO estimates reckon that around a million children get ‘ordinary’ TB each year (an estimate which amounts to 10% of the estimated 10 million new active cases each year), but the last Report added that more than half of them (54%) are still being missed completely (which means that only 460,000 of them got treated in 2017). What this also means is that proportionately more kids with 'ordinary TB are being missed than adults which obviously isn't right given that some of them are so appallingly vulnerable.

There’s no doubt, in other words, that they’re being proportionally under-served by the global response.

So on World TB Day 2019 here's what we'd like to add:

- It’s time to see more kids being found and treated!

But there's more.

Preventative treatment for kids

As already mentioned, children under 5 are also the most vulnerable age-group of all to TB infection. In other words, in a household with someone with infectious TB, they are the most likely family members to get infected and die.

Thankfully such so-called ‘high risk contacts’ (which includes kids up to the age of 5 and also people living with HIV) are recommended by the WHO to be automatically put on ‘preventative’ drug treatment (most frequently done with isoniazid, one of the first line TB drugs). This nine month treatment is assessed to significantly reduce their risk of developing active disease.

So how many kids are reckoned to live with this risk, and how widely is this treatment actually being done?

Well, the most recent estimate is worryingly opaque about this. It was reckoned that in 2017 a total of 1.3 million kids of less than five years of age were “in close household contact with bacteriologically confirmed pulmonary TB cases” (in other words in close contact with known infectious cases and so at 'high risk'). Meanwhile it was also reported that less than 300,000 of them received any preventative therapy in the same year. Superficially, this means that less than one-in-four of those kids who need this (cheap) protection are being afforded it.

But this doesn’t get near telling the whole truth and here’s why:

It’s because this estimate of 1.3 million close contacts were specifically defined as being under fives who were close household contacts of ‘bacteriologically confirmed cases’ (such cases themselves defined by being diagnosed and under treatment). This curious definition of the estimate of 1.3 million kids is critically important on two counts.

First of all it casually ignores the current estimate that globally 40% of all TB cases are believed to still be missed from TB programmes entirely (in other words the childhood contacts of these four million missing cases aren’t being considered at all).

Secondly, the risk for these kids who are in contact with 'bacteriologically confirmed' cases must logically reduce quickly (in a matter of weeks) once these adult cases get proper treatment and stop coughing.

So what about all those other under-fives (we suggest nearly another million of them by simple reckoning) who are unlucky enough to be sharing a house with any of those 4 million TB cases who are not diagnosed and are not in treatment (i.e. those 40% who are still getting missed completely)? Is anyone even considering them in this equation?! It doesn't look like it but they should be because these are the most at risk of all!

These aren’t petty epidemiological semantics because the risks for these (ignored) million odd kids (the ones who don't seem to matter) have to be higher than for the 1.3 million who do get mentioned. Think about it for a minute: anyone sharing a house with someone who is not being treated must remain at permanent (and so much greater) risk of infection because the TB case will inevitably remain potentially infectious as long as they survive untreated - and yet appallingly these highest risk kids are not even considered or calculated into the Report!

What this amounts to (we reckon) is that overall only about one-in-seven under 5’s get the (cheap) protection that’s recommended for them, and it could be worse.

We mentioned that we’re in Angola right now, and here they don’t even publish any data at all on this, and they're far from unique (make of that what you will twenty-five years into a global emergency..). So here's another addition to our appeal:

- It’s time to do something done about this, isn’t it?

MDR-TB in kids

Meanwhile, how many kids exactly are reckoned to develop MDR-TB each year (the most dangerous strain of TB)?

No-one seems to want to throw any published numbers at this either, despite MDR-TB being a global crisis.

But hang on! If any kids anywhere are put on treatment they surely must be being notified - so surely the number of kids who are actually diagnosed with MDR-TB and receive treatment must be on the computers in Geneva? Well no figures appear to be published on this (though they must surely be known not just because national TB programmes normally notify the global authorities on their MDR cases under treatment, but also because pediatric doses of second line TB drugs get ordered through the Global Drug Facility (GDF), so these numbers must be retrievable from two agencies in Geneva).

We’ve asked both the WHO and the GDF for their numbers on this, and neither agency has even got back to us. Well here's what we reckon (and we think it's probably conservative). We’d guess that, however many may be developing this type of TB, fewer than one-in-ten are being treated for it (i.e. out of the 60,000 estimated cases which we reckon occur annually [see below] only 6,000 see MDR treatment).

But we do know that some folk in Geneva are thinking hard about this because one of the targets that emerged from the UN’s recent High Level Meeting on TB was to see 115,000 kids put on treatment for MDR-TB between 2018 and 2022. This sounds good, but unless this number is broken down into discrete country targets there will be no accountability in relation to national numbers.

Unfortunately doing this appears to be giving these same folk a bit of a headache. While the other four targets set by the UN (for TB cases being put on treatment in the same period; for MDR-TB cases being put on treatment; for children to be put on treatment; and for high risk cases being put on preventative treatment) were quickly broken down country-by-country we’re still waiting for national targets for treating children with MDR-TB and we're not sure why.

While we wait for them, we can at least make our own assessment of what we think this global target should actually be from the numbers available to us in the most recent Global Report. We think it's reasonable to assume that the proportion of 10% of the overall epidemic or 'ordinary' TB that’s childhood disease can reasonably be equally applied to MDR-TB. If this is indeed the case, then we can further suggest that in 2017 around 60,000 children must have developed MDR-TB (because 600,000 new cases of MDR-TB were reckoned to have emerged globally in this same year). The maths is that simple.

But we’d add that logic tells us it could well be more. Since adult MDR-TB cases almost invariably take much longer to diagnose than ‘ordinary TB cases (often only after previous treatment failure), receive less proper treatment anyway (only one in four get proper treatment instead of six out of ten for 'all' TB), and then finally see fewer successful outcomes (55% globally as opposed to 82%,) it’s not difficult to see how (even when treated successfully) these adults remain infectious much longer and so can more probably infect children in close contact with them. In other words, we're suggesting that MDR-TB cases are probably much more likely to infect such children than those ‘ordinary’ TB cases are (who are normally non-infectious within weeks of starting treatment) so our simple maths could well be conservative.

These sort of probabilities suggest that there were likely more than 60,000 childhood MDR cases in 2017 (the last year estimated), and whatever proportion it actually is it is equally likely to be slowly rising.

But even if it is 'only' 60,000, the UN target for getting kids on MDR treatment doesn't add up! This target is for a five year period, and the target is for 115,000 children with MDR-TB to be treated over this time. It looks way too low to us - nearly two thirds short of the required aspirational number (because we've just reckoned that at least 300,000 childhood MDR cases will be emerging in this same period).

So, with great respect to those involved, we reckon it’s time that this is addressed as well! (Not least because we’re already a quarter way through 2019, which is the second of the five year period under consideration by the UN and we don't even have any numbers showing yet).

But another important question behind this one that’s even more concerning is this: how many of those (appallingly few) kids who are put on treatment for MDR-TB end up seeing successful treatment outcomes anyway? Surely this should be being reported as well?

Again, quite extraordinarily (because again these numbers MUST be available) no numbers appear to be being published on this. Our simple guess, and that’s all that it is by the way, is that it will bound to be fewer than one-in-two…

So let's summarise - 60,000 new cases of childhood MDR-TB appearing each year; an official average target of just 23,000 of them to be put on treatment (115,000 divided by 5); no numbers yet showing for how many kids are actually being treated (but we're guessing no more than 6,000); and of these fewer than 3,000 will see successful outcomes (that's just one-in-twenty start to finish).

So it’s time to do something about this too..

(So finally, and not for the first time in these blogs, we want to publicly acknowledge that we may well have got some of this wrong. Truthfully, we really hope we have done (because of some of the implications that exist in the previous paragraphs). So if you're an expert on childhood TB, have got this far and you reckon that we've got things wrong we would genuinely welcome you contacting us or commenting below. Please point out where our mistakes are. If we then accept that we're wrong we will be happy to make appropriate corrections to this blog.)

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