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<p>Vlad Sokhin</p>

Vlad Sokhin

Plagued: TB And Me

The greatest infectious killer in human history is making a comeback, morphing into new drug-resistant forms. While it is largely forgotten in wealthy nations, millions of people a year get sick from tuberculosis. Jo Chandler, to her surprise, is one of them.


In the warped currency of what we do as journalists, worst is best. When we weigh newsworthiness on the scales of disease and dysfunction, conflict and corruption, the bleaker the better. But for the reporter diving in, the maxim relies on a couple of critical perks of the job – the ticket home and the clean getaway.

The dismal conditions waiting at Daru Hospital back in August 2011 exceeded my saddest expectations. We spent some days poking around overflowing wards and diseased shanties for The Age, investigating the insidious reach of deadly, drug-resistant tuberculosis across Papua New Guinea. More than 60 per cent of the global burden of TB occurs in the Asia-Pacific region, and PNG bears some of the worst of it.

My notebooks were soon crammed with misery and my colleague, photographer Jason South, had collected pictures to break your heart. We couldn’t get out of town fast enough.

But then our flight home failed to turn up on the crumbling runway. Feeling duty-bound, we add to the catalogue of sick and dying, though we already have more than our editors would want or our readers might endure. Jason goes to the hospital morgue and finds Edna Neteere wrapping her daughter in a shroud.

She was 19, her wasted body barely rumpling the sheet – consumed by disease, hence “consumption”, as it was once so widely known. Her mouth is still drawn in a last grimace. Literature, history and the illustrious casualty list – several Brontes, Chekhov, D.H. Lawrence, Keats, Kafka, Orwell – might confer an aura of romantic dignity on TB diagnosis, but this young woman died “a terrible death,” says the nurse. Likely those luminaries did too, albeit buffered by a few more comforts, like privacy and pain-relief.

<p>Jason South/Fairfax</p>

Jason South/Fairfax

In the Daru hospital morgue Edna Neteere wraps her 19-year-old daughter, Susan, in a shroud.

Tuberculosis retains the distinction of being the greatest infectious killer in human history, claiming an estimated billion lives in the past 200 years. Its toll today is still second only to HIV (and it is the major killer of people with HIV). In 2011, 8.7 million people fell sick with TB. Edna’s daughter was one of 1.4 million who died of it that year.

We ride with Edna and her family in the ambulance-cum-hearse, a hard-lived troop carrier, back to their shack in the settlements at the island’s edge. One of the things I love about PNG is the raw, instinctive way relationships are recognised, even fleeting ones. A handshake of greeting might graduate to the lingering clasp of friendship, of sisterhood, of bonds like motherhood. For the duration of the short ambulance journey Edna’s hand weighs dry and warm in mine. She is bereft and silent.

Arriving at her home at ‘Madame Corner’ Edna’s young son – distraught at the loss of his sister – is swept up in the arms of waiting grief. Several thousand people live in ‘The Corners’, rough villages of scrounged tin and timber, invisible borders demarcating the territory of each clan. They’re cooking over choking fires; sharing an erratic, suspect water supply; shitting in holes – what option do they have? On our visit they’re still burying their dead from a recent cholera outbreak.

They are residents of Western Province, on paper PNG’s largest, richest landscape, many of them 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.”

<p>Philippe Schneider/World Vision</p>

Philippe Schneider/World Vision

Patients receive life-saving treatment in the TB ward of Daru hospital.

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 sanitarium in the hills, but that’s likely the last time the disease has touched our sphere. Most of the 1,000 to 1,200 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. Drug-resistant 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. It pleaded for “visionary political leadership” to tackle the renewed TB scourge and devoted a special edition to the cause.

<p>Philippe Schneider/World Vision</p>

Philippe Schneider/World Vision

Bazi Kesa is one of the TB patients of Daru hosptital. A new TB ward, built with Australian money, will be opened at Daru Hospital sometime June 2013.

“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 major 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 is published a young PNG woman diagnosed with still rare XDR TB dies 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, dies of MDR TB. At least four members of her family are 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 last year. 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 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 it. I summon up Edna 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.

<p>Jason South/Fairfax</p>

Jason South/Fairfax

Six-year-old Christina weighed only 8 kilograms due to TB meningitis.

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 mother Soba). Christina’s mother was praying for her to live but when I heard, months later, that she 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 the M. tuberculosis should find a nook 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 doesn’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 experience strange aches and occasional fevers and fits of violent coughing. One day I struggle to breathe at the top of a short flight of stairs, and figure I should see a doctor.

Shivering in a hospital gown, waiting too long for a verdict on a chest X-ray, I realise plainly something is 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.

<p>Philippe Schneider/World Vision</p>

Philippe Schneider/World Vision

Panie Gomerey is taking care of her one-year-old daughter, Siki. Panie's husband is also a TB patient receiving treatment in Daru hospital.

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 in the advice that I’d then run the risk of becoming infectious. Bombs away.

<p>Philippe Schneider/World Vision</p>

Philippe Schneider/World Vision

Asagi Aiapa, 50-years-old is a TB and HIV patient. According to the WHO, people who are co-infected with HIV and TB are 21 to 34 times more likely to become sick with TB.

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. And they are on my side, nagging the final-year-of-high-school son in the front room to Get Off Facebook. Without them I’d be months in hospital.

There are, of course, side effects to the drugs and enormous potential for surprising reactions. There are mundane complaints such as headaches and fatigue, thrush and diarrhoea, wild dreams and a terrible taste that overwhelms all food, ruins coffee and spoils the wine I shouldn’t have. There’s a perpetual ache in my chest (pleural scarring) which flares when I sigh or sneeze or laugh. My daily regimen now includes amikacin, cycloserine, pyrazinamide, ethambutol and moxifloxacin. I’m closely monitored for risks including hearing loss, eye damage, liver damage, kidney damage and, my personal favorite, psychosis. Of the latter, the kids want the doctors to explain – how would they tell?

So far so good on all fronts, whatever you might hear otherwise.

ACCORDING TO THE BEST GUESS of the World Health Organisation, I am one of an estimated 650,000 MDR TB cases worldwide. But the real reach is impossible to know because the technology required to diagnose it is so expensive and specialised that only five per cent of TB patients are ever tested for drug resistance, says MSF’s Cathy Hewison.

The vast majority of patients will never have a nurse drop by in the evening with their IV. They live in places like The Corners in Daru, PNG. That they might ever realise even the most pared-back version of my treatment is unimaginable. Their prescriptions will not be tailored to their conditions. They will likely suffer toxic effects – maybe lose their sight or hearing – from drugs that do them no good whatsoever, and miss out on therapies that work. If they have access to a program at all “the doctors might feel better”, says Hewison, but such regimes deliver little prospect of improvement to the patient.

<p>Philippe Schneider/World Vision</p>

Philippe Schneider/World Vision

Gaiba Michael, admitted in the TB ward of Daru hospital.

In nations such as PNG, Australia’s closest neighbor, where TB has raged largely unseen – thanks, until recently, to the lack of diagnostic tools – and often unchecked, fragile health systems are already overwhelmed by the burden of the disease. When epidemiologist Dr Emma McBryde, from Melbourne’s Burnet Institute, conducted a landmark survey of hospitals and remote aid posts in PNG’s Western Province last year, she was stunned to find almost every bed taken by TB, the disease sucking up scarce resources and limited capacity, marginalising other urgent health concerns. Some nations – notably South Africa - are considering bringing back sanatoria to confine the sick and contain the spread.

The McBryde report estimated the prevalence of registered TB in Western Province at about 500 cases per 100,000 people, on par with acknowledged international hot spots such as Mozambique and Cambodia. “Nevertheless, the true incidence of TB is likely to be even higher due to poor access to health care and poor rural health services in the region,” she reported.

While Western Province has attracted wide media interest and huge investment by AusAID and other agencies, that’s more likely due to political sensitivities and geographic proximity to Australia than to its situation being any more deserving or its systems any more burdened than some other parts of the country. Experts say that while Western Province is likely to have one of the worst TB profiles in PNG, there are other critical hotspots, including in settlements in the major cities .

Research will be presented at a TB symposium in Melbourne over the next two days indicating a prevalence of more than 1,000 per 100,000 in adjacent Gulf Province – second only to Swaziland. (The data is in review pending journal publication.)

“I think we need to be worried,” Dr William Adu-Krow, the WHO chief in Port Moresby, said when I interviewed him last December (three months before my interest in the subject became more personal). WHO’s own updated and still-to-be-published findings were also “very dramatic”, he said, ranking PNG amongst the “worst in the world”.

“Papua New Guinea is one of the few countries with a prevalence rate of more than 500 TB cases per 100,000 population. It was 534 in 2011, which is more than triple the regional average of 138 and the global average of 170 in 2011.”

<p>Philippe Schneider/World Vision</p>

Philippe Schneider/World Vision

5-year-old Anna Larry is coming to Daru hospital with her mother Lucy to get the TB drugs

The arrival of new diagnostic technology just last year is signalling a drug-resistant TB epidemic which is, he says, “off the charts” in Western Province and neighbouring Gulf Province. About half of the TB-positive sputum tested in Daru Hospital after the arrival of a geneXpert diagnostic machine last May was showing as multidrug resistant (MDR) TB.

Those early findings “gave everyone a shock”, though they were likely biased in that samples from the most suspect cases were the first to be tested, says Ben Marais. “But overall … these are alarming numbers, and cases are far more widespread than anticipated.”

A FLASH NEW TB WARD, built with AusAID money, will be opened at Daru Hospital sometime this month, undoubtedly with much fanfare. It’s part of a substantial portfolio of investments in health in Western Province – by Australian taxpayers (more than $30 million in that province alone), The Global Fund and aid agencies led by World Vision – aimed at improving what were recognised as dire conditions.

When I visited in August 2011 the hospital wards were derelict and overcrowded. There were too few nurses and drugs were in short supply. There was no doctor to be found. The X-ray machine was broken. “Poor old South Fly,” one veteran Australian aid official told remarked then, “seriously, God forgot them.”

Much has changed. As well as the new specialist TB ward there’s also a new X-ray machine and a coveted geneXpert diagnosis machine to quickly identify drug resistance. One of the most admired and formidable figures in PNG health circles, Sister Joseph Taylor – a Yorkshire-born Passionist nun and surgeon – has taken charge of the hospital. AusAID money has also gone into securing two specialist TB doctors, improving and extending community health programs and outpatient support, running a sea ambulance to access remote communities and improving internet access and communications.

Cure rates for people with TB in Western Province have improved from 45 per cent a year ago to well over 60 per cent, says World Vision PNG Country Director Dr Curt von Boguslawski. He gives much of the credit to programs extending support inside communities like The Corners – health workers reaching in to locate and support people with TB, making sure they take their medicine. “There is still a lot of work to be done – 85 per cent is the world standard.

“There is a lot happening. It’s on the agenda now, people are talking about it,” he says. “At times it is very frustrating … [but] for the first time we have some hope. For the first time in PNG we have country-wide reporting of TB cases. And for the first time we have secure access to TB drugs.”

Less optimistically, the capacity of organisations such as World Vision and others is largely determined by the machinations of the wider realpolitik. Support from The Global Fund – which pools private donations and state money, including from Australia, and is now the world’s largest financier of HIV, TB and malaria programs – for PNG programs has been precarious, but a $13 million grant has now been locked in for the next 18 months.

The Global Fund is itself strapped for cash. It wants the PNG Government, enjoying the windfall of a resources boom, to channel more of its own money into the critical task of tackling TB. Meanwhile an audit has undermined confidence in the capacity of the PNG Department of Health to administer Global Fund grants. And wealthy nations, including Australia, continually review their capacity to invest in international aid according to domestic budgets, priorities and pressures.

For a minute, quite early on in the hospital phase of my treatment, I imagined that at least I might now claim a bona-fide affinity with the people I so often write about. Michael Leunig has a prayer called Blessing In Disguise in which he gives thanks for the common cold: “Nature has entered into them; Has led them aside and gently lain them low to contemplate life from the wayside; to consider human frailty; to receive the deep and dreamy messages of fever … the insights of this humble perspective”.

But TB is not a cold. The neon-flashing revelation, when it comes, is that by virtue of sickness I am now further removed from the wayside of The Corners than ever. Some 95 per cent of TB deaths occur in low- and middle-income countries.

I’m the most privileged TB sufferer in my wide acquaintance – an otherwise healthy white woman in a wealthy country, attended by a small army of specialists and devoted carers, with unfettered, unbilled access to expensive, albeit frighteningly toxic, pharmaceuticals.

Not once do I contemplate having to confront the obstacles and agonies endured by TB patients I have met in places like Daru. Indeed, all being well, the worst consequence for me will be life interrupted, a spanner thrown into plans for work and travel. I am not one of the fevered, long-suffering patients I have seen wilt and expire while they wait for treatment.

I may have fluffed the getaway. But I was born with my ticket out.

56 comments on this story
by Neil cradick

Great story Jo, and has inspired me to do little googling about TB charities, seems like "stop tb partnership" gets the approval from who but more interesting is the giving what we can website for cost effective charities and a sobering appraisal of where we stand in world wealth rankings http://www.givingwhatwecan.org/where-to-give/charity-evaluation/health/tuberculosis
thanks again, the photo of Christina is very confronting and I instantly feel my defences rise, just my cognitive dissonance in knowing I can help but haven't. No excuse

June 13, 2013 @ 6:54am
by Old woman of the north

Sorry to know you have this disease. I am astounded that you went any where near TB without a mask. I worked in a TB clinic in the 1960s and we were never allowed to enter the ward without a mask.

I agree it is one of the world's biggest problems and growing.

June 13, 2013 @ 10:23am
by Karen Ingram Hall

I've spent half an hour trying to think of what to write in response to this story, but pretty much anything I can come up with seems inadequate. I just want to wish you well, Jo -- you are a fine journalist, and I hold you and your work in very high esteem. I hope your sorrow over the situation in PNG is assuaged at least a little by knowing that your stories shine a light on something that your readers would otherwise know nothing about. You do make a difference.

June 13, 2013 @ 10:50am
by Sonya Neufeld

An extraordinary piece by an extraordinary journalist who I have followed for years on development issues. My heart goes out to you and the hundreds of thousands affected by this debilitating disease. Exceptional writing.

June 13, 2013 @ 11:16am
by Jason

I was on a Business trip early this year, and have just come back from Papua New Guinea Myself where Tb and Aids are becoming a worsening epidemic. I am so Glad you are shining a light on this subject and I am so sorry you are dealing with this on a personal level.
In a small way I decided to do what I could and we were able to raise corporate funding and are now helping an orphanage with children who are suffering. You may find the following interesting.

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June 13, 2013 @ 12:18pm
by Aaron Oxley

The most powerful and important article on global public health I've read all year. Jo, you deserve a Pulitzer for being open and strong enough to share this story with the world. It's our job now to act and defeat the greatest infectious killer in history. This kind of attention to the disease is a critical first step.

June 13, 2013 @ 5:54pm
by Dalene von Delft

An incredibly touching piece expertly written. I can relate to most of the emotional aspects as I myself first saw the misery whilst working in South Africa, and then got the chance to experience it. I am a medical doctor that contracted MDR TB and since I was declared cured, I have become a patient advocate. I have just spend days in a WHO meeting discussing the challenges we face. This piece however brought me to tears again. I wish every one of our politicians and policy makers can read it. Every CEO of every drug company. I wish for you cure without irreversible side effects, strength to push through the nausea, love that wins over the stigma and courage to win the battle against TB. Always remember the power of hope. Thank you for sharing your story. You are such a brave woman.

June 13, 2013 @ 7:02pm
by Patti Blanch

Reading this journal brought back so many memories!! Yes I lived on Daru island for three years and saw the suffering of the people! I saw two year old babies with 'school sores' on their ears and faces and flies not leaving them alone. Little boys with seeping penis' and flies all over them!! Malaria was everywhere and didn't miss all the members of my family. I was shocked and saddened to read that life on Daru has not improved. Your photos brought back many memories and made me cry!! Surely the government could do something!! I am so sorry to hear of your illness and pray God will help you to have better health. Thank you for writing so very well about the situation. Hopefully some 'powers' read this and help these poor folk. All the best.

June 13, 2013 @ 7:26pm
by Suzanne Mullins

Thank you for such an informative article...as usual....on such a sensitive subject for you. I was shocked to hear the announcement of your diagnosis during your discussion with Jon Faine on 774 today. I am so glad you have such wonderful medical support here in Australia but this must be bitter sweet for you having experienced first hand the poverty and lack of such support in our neighbouring countries. Best wishes and take care.

June 13, 2013 @ 8:16pm
by Bri Olewale

This article has opened my eyes to something that I have never really appreciated, thanks for this information, I believe that even in Port Moresby this disease is affecting many families.

June 13, 2013 @ 8:29pm
by James Trevelyan

Well done for a great article, the first I have read for a while since this news site seemed to become fixated on a single storyline to do with medicos and drugs. I contracted a previously unknown Hepatitis A variant from Cambodia which left me precariously close to darkness for several weeks, and from which it took 2 years to recover fully. That experience focused my attention on understanding why poor communities stay poor, and how improved engineering practice can help bring low cost services that keep TB and other horrors distant for most of us here in Australia. Thanks for the reminder to keep that in focus.

June 13, 2013 @ 8:54pm
by Liz Porter

Extraordinary piece Jo. Congratulations on a piece that illuminates so much .I wish you well with your recovery

June 13, 2013 @ 9:41pm
by TB Proof

Hi Jo. Thank you for your terrific courageous story! My wife was diagnosed with MDR-TB while caring for children as a South African doctor. She needed compassionate access to the first new TB drug in 42 years to save her hearing and profession (possibly even her life). She was one of an extremely small number of fortunate patients. We subsequently started an advocacy organization, called TB Proof, to create more awareness and promote access to equitable care. There are so many parallels with your story: we would love to talk to you. Please email me at vuzumsi@gmail.com or look at these sites for more information:
www.tbproof.org
www.facebook.com/TBproof
Good luck with the long road back to health!
Arne von Delft, SA

June 14, 2013 @ 12:15am
by Jenny Rogers

What an incredibly sad story that the world should know about. I hope that you story will make governments take note and act. All the best for your recovery Jo we know you are in good hands.

June 14, 2013 @ 1:41pm
by Operation ASHA

Dear Jo, We really appreciate your article for its eye-opening recounts. The infographics and pictures demonstrate the raw realities TB brings to over 12 million people each year worldwide - and yet it is curable. At Operation ASHA, an NGO fighting TB with an innovative model and eCompliance technology, we are trying our best to detect and treat TB, whilst preventing MDR-TB. For more details, see our website: www.opasha.org
Thanks

June 14, 2013 @ 3:59pm
by Teresa Rugg, TB Photovoice

Thank you Jo for your authentic voice and perspective. You will be in my thoughts and prayers as each new day comes and you meet it with courage and strength (and obviously humor!) Our organization www.tbphotovoice.org is currently collecting stories of persons impacted by TB. This project's focus is in the U.S. (Washington State), with the intent of bridging the gap between TB of the past and TB of the present around the globe. We will share your story on our facebook page. Perhaps you know of the amazing group called RESULTS (www.results.org.au) in Australia. They are ordinary citizens who care deeply about those impacted by TB and global poverty issues. RESULTS is a great organization for folks to get involved in and make a difference! Again, may you continue to receive the support you need, and thank you for sharing your story so that others can become informed and moved towards action.

June 14, 2013 @ 4:33pm
by Sue Packham

What an epic article Jo - and thank you for writing it. It illuminates the horrific consequences of having this disease in both a wealthy country and one that is dominated by poverty. It powerfully says how selfish and mean we first world nations have been and still are, when it comes to the prevention and treatment of people in far away places and countries. The Global Fund seems the most trusted organisation for doing this job currently, yet the Australian government late last year withheld $11 million of a multi-year commitment to The Global Fund made in 2010 so it could pay for its asylum-seeker costs - as if we can't do both.
Jo I wish you eventual good health and may your article stir the government purses!

June 14, 2013 @ 5:09pm
by Diana Shanks

I read this article with concern. These diseases know no borders. Previously the treatment for Tores Strait Islanders were in the Hospitals mentioned and now those with TB infections need to go to Cairns hospital. It was not long ago that a young women died there from TB. Additionally of concern for PNG is the link between TB and HIV. RESULTS Australia has been advocating for more funds for The Global Fund and AusAID to allocate increased funding to PNG. There has been more allocated but its not enough. Australia must respond to the health needs of our near neighbour and not reduce funding to The Global Fund- which it has done in the past year.

I wish Jo well. Your article is fantastic, written with humility and a real insight into quality journalism. We feel the pain of those she met and now experience her frightening predicament but also relief that she is lucky! Lets hope many read this especially our politicians.

June 14, 2013 @ 6:02pm
by Dino Asproloupos

A most intimate & personal reflection on DRTB with the most selfless sense of perspective that I think I've read. Thank you for sharing your story & the reality that the other 95% live in.

June 14, 2013 @ 8:21pm
by lyndria

Jo. Your an amazing person and a wonderful journalist. I wish you the very best for your life's adventures from here and am so hoping you get a complete recovery. We desperately need more people like you in our self interested world

June 14, 2013 @ 8:46pm
by francoise freedman

Hi Jo, best wishes with your treatment and recovery. Thank you for alerting people out there to the spread of TB. Sadly it's affecting a lot of indigenous people. I did not realise how bad it was in PNG but in the Amazon region a lot of women are dying from TB and it's not something that is known outside. I will email you directly for information about TBproof.

June 15, 2013 @ 7:22am
by Susan Merrell

Jo, I'm so sorry to hear that you "won the lottery." I too have written extensively on TB in PNG and travelled into Goilala in the Central Highlands to check out the situation there, first hand. No one there wore a mask (and neither did I) at the clinic. Luckily for me (I suppose), I am the one in three person who has latent TB (suppressed) and have had it since a child. (I only learned this last November when I attended an international conference on Lung Diseases and TB.) I have since been trying to shame the PNG government into providing a geneXpert machine for the clinic at Tapini (at present Community Health Workers diagnose on consultation only). The clinic could make do with a small geneXpert machine that could cost as little as $15,000 - delivered. I want to scream when I hear of the wastage of funds (not to mention corruption) and yet multiple people die because of $15,000. AArrgghhh!!
I also learned, at the conference, how horrific and toxic the drug regime is for MDRTB - My sincere sympathy, Jo - but luckily for me, not empathy. get well soon.

June 15, 2013 @ 7:58am
by Olav Muurlink

This is a great article, with the right balance between self-revelation and putting the emphasis where it belongs: on the great majority who have no 'ticket out'. Really nice work Jo.

June 15, 2013 @ 10:39am
by Steve Bradbury

Thank you Jo for your passionate and compassionate advocacy for those who suffer from this dreadful disease without access to the rich resources of a rich country health system. I do pray for your recovery to full health, and for a better deal for those you advocate for.

June 15, 2013 @ 10:45am
by Terry Wall

When you life is at stake, there is no doubt at all, that anyone who offers assistance is an angel. Period. I had no idea that TB was still such a big issue so thank you for the update.

When you described TB as morphing into a a new drug resistant form, it inspired me to remind us all that approximately 80 percent of antibiotics sold each year, is allowed to enter our bodies in dangerous micro doses, via the food chain. Yes that is right; under the watch of our current health professionals who I imagine are the ones that should be leading the way of protest, 80 percent of antibiotics is given to animals (mainly chickens) only to increase the profit level of the corporations, who we now find rarely bother to pay tax.

So yes they are angels, but they are wearing gumboots covered in sh.. and using fear to keep all of us plebs in place.

June 15, 2013 @ 12:27pm
by Kay O'Sullivan

Jo, An extraordinary and moving story. Your compassion for the people you write about shines through the harsh facts of a dreadful situation. I wish you all the best in your recovery.

June 15, 2013 @ 2:21pm
by Sue Goodrick

Very well written article. Captivating reading right to the end. Real descriptions - shocking but not sensational. No preaching but there's an ethical lesson there for everyone.

June 15, 2013 @ 5:29pm
by Trevor Kerr

When reporters go into war zones, they and their employers have a reasonable grasp of the hazards. If your employer had described the conditions to any of the infectious diseases experts at RMH and MMC, what would they have said about the risks? At least you now know the reason for negative-pressure isolation rooms and high-efficiency respiratory protection. Did anyone advise you to take your own N95 masks to Daru?

June 15, 2013 @ 6:16pm
by Paul Gunning

I thought TB was a thing of the past. Thank you so much and sincere wishes for your recovery.

June 15, 2013 @ 7:00pm
by Peter Franklin

A bit of shock really. Thanks for sharing.

June 15, 2013 @ 7:50pm
by Lesley Ann Porter

It is so sad to see people suffer like this. They are like everyone, just living their lives and then TB strikes. I agree that it is disinterest on this score that TB is running rampant in places where people don't have the facilities to handle TB.

I remember as a young girl my mother always worried about TB and we would go to the mobile Xray van when it came and get checked. Then when I was a teen we were give the TB shot. Why isn't something like this available to everyone that is at risk. What is wrong with a hospital facility that caters for TB patients. Yes I think as we go on we forget.

June 15, 2013 @ 8:19pm
by Mike Reid

A bloody good piece. Thank you. I hope you don't do your head in thinking too hard about the unfairness of your access to good care. I get that it's unfair, I just hope you don't do your nut dwelling on the fact.

June 15, 2013 @ 10:47pm
by Eunice Phillip

Hoping this will enlighten more people and organizations will help in screening their employees and health providers will be more passionate in the teachings. the treatment works. so what the heck. Get tested, get treated.

June 16, 2013 @ 5:33am
by Marie Scoullar

Confronting, compassionate journalism written with respect for those whose lives are already so tragically impoverished and further burdened by this insidious disease and neglect. If only this were front page - rather than the shabby politics of the last. 10 days.

June 16, 2013 @ 5:00pm
by Josh

Exceptional and eye opening to world of our closest neighbour. Journalism like this makes gives me hope that there are compassionate, good hearted folk trying to share stories that need to be told. Thank you!

June 16, 2013 @ 8:54pm
by Laura

Incredible story - thank you . Australia should be investing in the health of our neighbouring countries because infectious diseases not only cause terrible suffering for people in PNG but do have the potential to cross borders. This is what our politicians should be talking about - I agree Marie. These are issues that really matter and a chance for our Government to do something that will make a real difference.

June 17, 2013 @ 10:27am
by Andrew

Your story is "on the money' about TB and the relationship between Australia and PNG. Brave of you to write about it. An Australian friend of mine recently came back from Ethiopia with it.
I visited Dau Hospital in the mid 2000's but did not visit the wards. The chief medical officer there was worried about JE in Daru and how the central PNG Govt had stopped testing for it as a way of saying it wasnt present.

June 17, 2013 @ 5:37pm
by Sophie

Absolutely brilliant article Jo. Many thanks for shedding light on such an important issue.

June 18, 2013 @ 10:32am
by Mustafá Adura Orra

you be blessed for your job...no ......for your love

June 20, 2013 @ 3:15am
by Martin Kouprie

I, living in North America never once thought that TB has become so widespread in developing countries (misnomer) and that the disease itself is morning into drug resistant varietals. Awareness is the first part of combating TB and as a result I am mindful that I will need to do my part. Thank you Jo for this insight.

June 20, 2013 @ 4:20am
by Wendy

A wonderfully generous story complete with great research

June 20, 2013 @ 6:21am
by jeri lynn williams

Love and prayers are with you and your family during this difficult time. Remember to eat much yogurt. Thanks for all you have done to bring attention to this troubling situation. I will be checking in with World Vision and UNICEF. Take care of yourself. The world needs more people like you. @jeri_love2uall

June 20, 2013 @ 6:32am
by Mia

TBC - Leprosy- Siphilis are Bacilos. More common in Tropical climate (Humidity) and very resistant. My father was infestec with TBC in the late 50's , he was young and a sunshine outdoor lover, and he develop resistance to TBC .He said eat Meat (well-done) was the best medicine for him. In the Tropical Rain Forest the Medicine indians use SMILAX spp. and work! Vitamin D3 and B Complex help too. Believe me I have found that for sure is that next to the sick person in bed, there is the MEDICINE PLANT TO CURE next to the bed (outside) . Bring with you an Expert in Botanic & Medicine plants: find the nearby right plants and prepare huge amounts of Te for the sick and teach them how to find more plants Medicinal Plants and help others after they recover in Asia, Africa, etc. My Dear God please Bless the World. Amen.

June 20, 2013 @ 11:22am
by sheela auguesteen

Hello! Wonderfully written story on a disease that needs much attention from each one living on the planet. Thanks for sharing it.
I work for an organisation called REACH based in Chennai, India and we do a lot of work in TB control initiatives.
My prayers are with you and your family as you go through this difficult time. May God touch you with his healing hands and keep your spirits up. Take Care.

June 20, 2013 @ 3:16pm
by Shahbul Alam

I thrilled to know that this kind of disease would kill so many people! I thought that scurvy, HIV, were the main diseases of the world. In living in Asian country I can't imagine for such terrible disease. If i could reach i would nurse those people who are suffering from these diseases! But I am a teacher who is unable to come to see the patients. God will bless who are helping these people. Very tragedy to these people. In our country we are struggle for existence against Chronic bronchitis....! God will bless us.

June 20, 2013 @ 8:16pm
by Trip

Highly engaging article. Amazing that in a world of so much technology, we haven't figured out how to eradicate (or at least trivialize) one of our oldest predators.

June 21, 2013 @ 5:56am
by Pete

I am from the USA where people fight against having healthcare for everyone. I work for a TB control Program and I see how it harms people especially children. Wake up world!

July 4, 2013 @ 5:59am
by Livvy

A friend, Australian born ( never travelled overseas) also contracted Tuberculosis. She was first diagnosed with breast cancer, underwent chemo, was told she had secondaries in the lung before being correctly diagnosed and treated for TB. Her doctor told her that she could easily have picked it up in a shop or on the tram. Are their numbers kept for TB cases originating in Australia?

July 8, 2013 @ 9:56pm
by Loes

Thank you Jo, for this essential and well-written piece. Thanks for shining a light on the differences between treatment for people in our part of the world and people born in different, less lucky circumstances. The world needs people like you. All the best in fighting your disease and keep up the good work after you get well. Take care!

July 9, 2013 @ 8:30am
by Wells

Thank you Jo. A friend of mine died earlier this month in Port Moresby from TB as well, unfortunately for most of the part of his ordeal he continued to make reference to Black Magic. Now I recently learnt that my nephew has TB as well. It is scary to say the least. I am a Papue New Guinean and this is freaking scary to say the least. I hope out politicians wake up and start supporting workd wide efforts to eradicate TB. Thank you for your bravery in getting this story out to us all and May God Heal You and Bless you so you can be an advocate for the fight against this hellish disease. Take Care?

July 16, 2013 @ 8:35am
by Rosemary

Thank you Jo for writing this article. I was unaware of the extent of TB this day and age. I also am amazed at the miserable infrastructure conditions in png considering the years of receiving income from mining and aid from australia and elsewhere. Where has all this money gone in such a small population? I hope you regain you strength and health.

August 9, 2013 @ 9:54pm
by Pedro

Very sorry to hear about your condition, and those of so many unnamed others.

Thank you for your courage in reporting this story.

January 4, 2014 @ 12:05pm
by Lorraine Brosnan

All the more reason why Australia should continue to give PNG assistance with health & medical issues.

January 5, 2014 @ 2:07pm
Show previous 53 comments
by Garry

This article is an absolute credit to Jo's humanity and her sense of professional responsibility. She writes compellingly, without forcing her audience to drink. Best wishes!

January 6, 2014 @ 12:33pm
by Helen McCarthy

Jo, Thankyou for 'sharing' your terrible story & illuminating the difference between yours & the tragic plight of so many in PNG. We in Australia must help . Best wishes for your recovery.

January 11, 2014 @ 4:19am
by Mathalin Barton

What a brilliant read. I am a Papua New Guinean residing in Melbourne and thank you for sharing my people's plight. At this very point in time, I am grieving the loss of my nephew, aged 26, and my niece's 12 year old son who passed away within a space of a week from TB Meningitis. I am sad but angry at the same time that Government, with all the money from the resources boom, inject into fighting TB and setting up the Port Moresby General Hospital with equipment and medication that can save the lives of everyday Papua New Guineans who cannot afford private hospital fees. I will find a way to help with TB in PNG as it has taken two of my family members. Thank you, once again.

February 4, 2014 @ 10:46am
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