The Best Australian Science Writing 2014 (31 page)

They are residents of Western Province – on paper PNG's
largest, richest landscape – and many of them are members of the Fly River diaspora collecting royalties or compensation from the infamous, fabulously wealthy Ok Tedi gold and copper mine upstream. Nonetheless many are poorly nourished and dozens might share a room at night. TB thrives in such conditions.

On the map, all that separates their reality from mainland Australia is the narrow ribbon of Torres Strait, though the distance feels much wider. Locals can – and sometimes do – use banana boats to cross from one of the worst health systems in the world to seek treatment in one of the best. Such traffic is being discouraged by Australian and PNG authorities, stirring political sensitivities and medical controversy, which in part is why I have come.

Several mothers in the crowd cradle too-big children on their hips. One, Soba, introduces me to her four-year-old, Sawai. He had TB and now his legs don't work, but he's very clever, Soba boasts. His smile is sweet and incongruously joyful.

Some of the other children's limbs are shrivelled, their heads misshapen and eyes vacant in a way I have come to recognise. They are survivors of TB meningitis, the infection having found its way into their brains, rotting away physical and intellectual capacity. Their work-worn mothers must now be their legs, and when the tide is low they stagger through grasping mud, balancing babies, firewood and food supplies. The cruelties of this preventable, treatable disease are boundless.

Round about now my fortifying reporter's sense – delusion? – of mission falters. I feel ashamed for my intrusion; my questions sound vapid and hollow, drowned out by the keening. I don't feel so well. Jason empties the kina from his pockets and insists Edna take it – ‘for the funeral' – and we leave them to their mourning, their
haus krai
.

I'm relieved to get back inside the tall wire of the Catholic compound where we're guests, grateful for the security of the
stroppy dogs that patrol the perimeter, for the comfort of a hard, narrow bed, and for the threadbare hospitality of the sisters. I'd really like to go home now.

Sometime in those few days, somewhere, someone coughed or sneezed or sang or laughed, spraying a cloud of invisible
Mycobacterium tuberculosis
into the air, and I inhaled. By the time my ride out finally materialises on the tarmac and I click my heels for home, it seems I have a stowaway. Eighteen months later, in March 2013, I am diagnosed with multidrug-resistant tuberculosis (MDR TB). Let's call it accidental immersion journalism.

* * * * *

My uninvited guest is wily and resourceful, not unlike folk I've met who, like him, were born and bred in the unforgiving bayous of PNG's South Fly.

His DNA has evolved to remember and evade assaults from the pair of first-line, workhorse antibiotics that have worked so mightily to conquer TB in many parts of the world over decades – isoniazid and rifampicin. Until only a few years ago it was thought that only those existing TB patients who didn't take their medicine – because they couldn't access them, or because they refused or forgot them – were vulnerable to drug-resistant strains. Now we know it spreads easily and invisibly in the air. My bug is a modern manifestation of an ancient plague that still has a few tricks up his sleeve.

‘All the evidence suggests that tuberculosis is the archetypal, ancestral pathogen,' explains Dr Ben Marais, a TB specialist at the University of Sydney. ‘It's been with us since we've been walking on two legs.' In part, he says, it's the intimacy of hundreds of thousands of years of co-existence that makes TB such a formidable foe. It knows us too well. It's estimated that one-third of the world's population is latently infected with the TB bug.

‘The TB bug is clever,' agrees Dr Cathy Hewison, an Australian specialist based in Paris overseeing some of Médecins Sans Frontières MDR TB programs in 21 countries. ‘We haven't put enough time and effort into understanding it. We haven't put the time into having an effective vaccine. We haven't put the time into understanding the interaction between immunity and TB. We don't have good diagnostic tests. We don't have a rapid blood test. Our tests are failing us.'

It's also capitalised on our selective attention. Members of my generation, in wealthy nations, may well recall that Nana had TB and spent a couple of years in a sanatorium in the hills, but that's likely the last time the disease has touched our sphere. Most of the 1000 to 1200 TB notifications in Australia each year occur among immigrants and visitors. (Once I'm hospitalised my case, consequently, draws quite a crowd at Grand Rounds.)

TB is invisible because the people who suffer it are already on the margins, says Hewison. ‘They are the poor, the prisoners, alcoholics, refugees, Aboriginals, drug users, old people. And the drug companies forgot it because there is no money to be made there,' she observes. ‘I think we should blame it on a lack of interest.'

Much of the armory health workers rely on – for diagnosis, treatment and prevention – is decades old. New vaccines loom on the horizon, but meanwhile the effectiveness of the standard BCG vaccine I got back in high school, which has been around for almost a century, is patchy. It may reduce disease among young children, but yields little protection when bacteria are coughed out by adults in epidemic situations.

Sixty years ago, with the arrival of effective TB drugs, ‘people probably thought TB was a vanishing disease, that it would be cured by social and economic improvement, that if we just improved standards of living it would go away. Which may still be true,' says Ben Marais. But in many parts of the world the
misery continued unchecked, and in 1993 the WHO declared TB a global emergency.

Twenty years later TB rates globally appear to have stabilised, even slightly declined, and treatment programs rolled out over that time have saved an estimated 20 million lives. But those statistics cloak a more sinister scenario. The disease has become deadlier and formidably difficult and expensive to treat. Drugresistant strains of TB – like mine and worse, including a handful of cases so potent that they defy all treatments and conjure nightmare outbreak scenarios – are brewing and spreading in crowded, impoverished communities around the world.

The experts are deeply worried. For decades the response to global tuberculosis by governments in both wealthy and disease-endemic countries has been ‘complacent and politically neglectful', the medical establishment declared in a thundering editorial published in the
Lancet
in March 2013. It pleaded for ‘visionary political leadership' to tackle the renewed TB scourge and devoted a special edition to the cause.

‘Rising rates of multidrug-resistant (MDR) and extensively drug-resistant (XDR) TB threaten global control efforts in both developing and developed countries,' the
Lancet
authors – Ben Marais among them – warned. The rise of drug-resistant TB and the ease of international travel means ‘the threat and range and spread of untreatable TB is very real … A conceptual change and visionary global leadership are needed to move away from the conventional view that tuberculosis is only a disease of poor nations.'

About the time this was published a young PNG woman diagnosed with still rare XDR TB died in isolation in north Queensland at Cairns Base Hospital. Then a Queensland mother, resident of Saibai Island in Torres Strait, just on the Australian side of the border, died of MDR TB. At least four members of her family were infected. Queensland Health used
to run a TB clinic on the island, and people would sail across from Daru for treatment, but it was closed in 2012. Australian and PNG authorities argued the money would be better spent investing in improved services and facilities in Western Province, but specialists in Cairns maintain that a vulnerable frontier population has been abandoned.

I digest all this as I recover at home, still a little shocked when I hear the phrase ‘I've got TB' come from my mouth – and still adjusting to the horrified response it often elicits. My body is sore from surgery, and weakened and assailed by the mindblowing volume and variety of drugs coursing through unhappy veins. My partner is gentle and my children attentive and my parents worried. I'm profoundly grateful to every doctor, every nurse, and for every jab and tablet and almost every bloody cannula.

I have notebooks full of stories of TB patients who die seeing none of this. I summon up Edna's daughter or Sawai or any of the nameless, anguished casualties sprawled on grimy beds in a half a dozen countries. Or Christina, who had TB meningitis, and who we met in Daru.

We put her photograph on page one of
The Age.
Her mother was bathing her in a dish. She was six years old and weighed eight kilograms. Several readers rang the next day to complain about the picture, so you won't find it now if you Google the story (though you will see Sawai and his mother Soba). Christina's mother was praying for her to live but when I heard, months later, that she had died, part of me was relieved – I wish I could find a better word.

The
Lancet
line also jars – ‘only' a disease of poor nations? So a failure to respond is excusable? Perhaps the authors are just more pragmatic and less squeamish than I about recognising, and exploiting, the powerful motivator of self-interest. So, shall we talk about me?

* * * * *

It's against the odds that
M. tuberculosis
should find a nook in which to settle and thrive within a healthy, well-nourished, vaccinated host like myself. Tuberculosis is, after all, a disease of poverty and proximity. As one doctor friend brightly remarked, ‘you won the lottery!'

Medical workers at the front line often seem blasé about the risk of infection. I've visited maybe a dozen TB wards, most in southern Africa and several in PNG, while researching stories, and only ever seen a minority of staff in masks. Given that I merely waft around with a notebook and never deal intimately with patients, it didn't occur to me to ask for one.

I was unwell when I returned from PNG in late 2011. It was all a bit baffling and I blamed it on anti-malarial medication, but then the symptoms settled and I forgot about it. But a year and a half later I experienced strange aches and occasional fevers and fits of violent coughing. One day I struggled to breathe at the top of a short flight of stairs, and figured I should see a doctor.

Shivering in a hospital gown, waiting too long for a verdict on a chest X-ray, I realised plainly something was awry. The radiologist traces the shadow of a large pleural effusion on the lightbox – fluid that is crushing my right lung, making me cough – and sends me straight to hospital with suspected pneumonia. I'm admitted and strongly advised by the emergency doctor not to Google ‘pleural effusion'. Too late.

Over the next days come more tests, more scans, surgery to clean out the muck and biopsies for analysis. A chest tube is installed to drain fluid and I'm pumped with antibiotics that burn like fury as they flow through the cannulas in my wrists. I throw my first, and so far only, wobbly. And I worry, like sick people do. I'm questioned extensively about my travel history and, being a bit of a tosser, rather enjoy recounting ‘Afghanistan
and Antarctica'. TB looks like a very long shot, the doctors say. They're vague on other frontrunners which, according to my research (curse the internet), include liver or lung cancer.

It takes a week for a test flagging TB as the likely culprit and that it is likely to be drug resistant. Everyone else seems appalled, but I'm just rapt it isn't cancer. I move to the Royal Melbourne Hospital where I'm put into the care of an infectious disease team and isolated. They're all tremendously reassuring and interested, though it's disconcerting that everyone who enters my negative-pressure single room must wear a mask – ‘just protocol'.

As in the classic doctor's gag, there's the bad news – at least two years of aggressive drug treatment, including four months of intravenous drips. For ease of access a little dangling valve is poked in my upper arm and a tube nudged near my heart – a PICC line (peripherally inserted central catheter). It's a curious bit of bling but I love that it means fewer injections.

The good news? Tuberculosis is most commonly associated with the infamous hacking cough of pulmonary disease, when the bacteria inhabit the lungs and are unleashed on the unsuspecting via coughs and sneezes. But TB can grow in all sorts of places – stomachs, intestines, brains. My bug, at its own happy whim, has chosen to keep itself nicely corralled in the pleural sac around my lung.

As a result I'm not contagious. My partner, family, friends and the guy next to me on the train are all safe (my household is given mantoux tests, to be sure). Most blessedly I haven't endangered the newborn nephew I visited in hospital weeks earlier. The phone call to his parents, before the all-clear, is the hardest I have ever made.

Samples of my bug are sent to laboratories in Queensland and Melbourne and coaxed into growth. It will take two months for them to yield the details of my infection – what it fights off, what it will respond to. Meanwhile the strategy is to nuke the
bugger with an arsenal of best-guess antibiotics, all tailored in a kind of chemical offensive to cover all bases and each other, although the doctors admit they are flying blind until the phenotypic analysis comes in – directly testing the grown organism against various drugs.

There's another option. Do nothing, and pray that I am among the one-third of patients who just miraculously recover. If there was even a moment of temptation it vanishes with the advice that I'd then run the risk of becoming infectious. Bombs away.

I'm stabilised, transferred into the care of specialists at Monash Medical Centre and sent home, where I'm visited every evening by nurses. They run a 30-minute IV from the magazine rack perched over the sofa; check or change the dressing on my PICC; record my ‘obs' and take my blood; gently ask about my state of mind (scatty and often stoned) and bowels (don't let's start); check the jam-packed dosette box to be sure I'm keeping on top of my medication. They are on my side, even nagging the final-year-of-high-school son in the front room to Get Off Facebook. Without them I'd be months in hospital.