by Ashley Hay
So, where does that leave us? We have seen how the PSA test misses people who do have cancer, incorrectly diagnoses it in those who don’t, identifies it decades earlier than necessary, finds it even when it will never cause a problem and, in the majority of cases where it does identify cancer, does so too late for it to be cured. The TRUS biopsy is associated with pain, bleeding and life-threatening infection and turns the ‘what you don’t know about won’t hurt you’ cancers into ‘what you now know can hurt you’ cancers. If that isn’t enough, the treatments for prostate cancer cause impotence and incontinence and cure only 2 to 3 per cent of the men who receive them.
I fear that prostate cancer screening is one of the most unfortunate medical examples of the Law of the Instrument: the idea that when all you have is a hammer, everything looks like a nail. Our current tools for diagnosis are inadequate and, in the case of biopsy, increasingly dangerous. (Some urologists are now using MRI scans instead of TRUS biopsies but the sensitivity and specificity of this approach is not known with any certainty. Others recommend passing the biopsy needle into the prostate through the skin of the perineum, the part of the body between the anus and the scrotum, to avoid the rectum.) It is clear that we need a better screening test and more effective therapies before we can safely and ethically recommend coordinated screening for prostate cancer.
* * * * *
I’ve tried here to confine my case against screening to scientific argument and to avoid ascribing anything but good intentions to those groups and individuals who promote it. This may be a little naive, so I’ve saved the last word for the person who made contemporary prostate cancer screening possible – the discoverer of PSA, Richard Ablin, now a professor at the University of Arizona. In a piece for the New York Times in 2010 titled ‘The great prostate mistake’, he observed that the PSA test ‘is hardly more effective than a coin toss’. He went on:
As I’ve been trying to make clear for many years now, PSA testing can’t detect prostate cancer and, more important, it can’t distinguish between the two types of prostate cancer – the one that will kill you and the one that won’t … So why is it still used? Because drug companies continue peddling the tests and advocacy groups push ‘prostate cancer awareness’ by encouraging men to get screened … I never dreamed that my discovery four decades ago would lead to such a profit-driven public health disaster. The medical community must confront reality and stop the inappropriate use of PSA screening. Doing so would save billions of dollars and rescue millions of men from unnecessary, debilitating treatments.
When the father disowns a scion this famous it is probably wise to pay attention.
From Alzheimer’s to zebrafish
TB and me
TB and me: A medical souvenir
Jo Chandler
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 exceed my saddest expectations. We spend 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 are soon crammed with misery and my colleague, photographer Jason South, has collected pictures to break your heart. We can’t get out of town fast enough.
But then our flight home fails 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, DH 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.
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-cumhearse, 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 – 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 hospi
tal 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.
