A Doctor's Dream: A story of hope from the Top End

By Buddhi Lokuge and Tanya Burke

When Dr Buddhi Lokuge embarked on a $5 million program to eradicate an infectious and debilitating disease, he soon realised the entire program was unworkable. By listening to community elders, he discovered a better way forward, and new hope for children and their communities. An inspiring David and Goliath story from Australia's Top End.

When Dr Buddhi moved to Arnhem Land to run a health program for Aboriginal children, he had no idea he would face the challenge of his life.

Six months into running the 5 million dollar program he realised it was going to fail, and that's when the trouble began. In the face of powerful opposition from high profile experts, he listened to the elders and took the slow road. Through painstaking observation and working in partnership with patients and the community, together they found a way to overcome a neglected disease as debilitating and stigmatised as leprosy.

This is a powerful story of redemption, and an honest and inspiring account of a family living and working in remote Aboriginal Australia to give voice to forgotten people.

'Could not put it down. It is one of the best things I've read in years in this area, full of profound insights encapsulated in a great story.' - Professor Peter Drahos, Australian National University

• Language: English
• Publisher: Allen & Unwin
• Release date: Aug 27, 2014
• ISBN: 9781743438688

Book preview

1

INTRODUCTION

It was a spectacular fall from grace.

Just six months earlier, in the tropical cyclone season of 2011, I had arrived in the Northern Territory on a wave of goodwill, ready to eradicate scabies from remote Aboriginal communities.

The scabies program was funded by philanthropist and entrepreneur Sam Prince and designed by internationally renowned epidemiologist and head of child health at the Northern School of Medical Research Professor Lawrence Johnson, but it hadn’t taken long for me to completely lose Johnson’s support.

Scabies is a major contributor to chronic heart and kidney disease in remote communities and Professor Johnson’s plan, Farewell Scabies, was to create dramatic, lasting change by attacking the root of the problem. Starting with almost 10,000 people in remote east Arnhem Land, then expanding nationally, he had developed what sounded like a foolproof strategy to eliminate the eight-legged parasite through a mass administration of the drug ivermectin. A mass drug administration would treat the whole population simultaneously to wipe out the parasite. All I had to do was roll it out.

I was a medical graduate from the University of Sydney and for years had worked around the world, coordinating health programs for the Nobel Prize winning humanitarian organisation Médecins Sans Frontières (MSF), otherwise known as Doctors Without Borders. I had a Masters degree in public health from Harvard and had completed a PhD on controlling cross-border disease outbreaks. My family also had a connection of sorts with the remote Northern Territory. We had first moved to Darwin when we migrated to Australia from Sri Lanka in the 1970s. As a child I grew up with my father’s stories of working as an engineer with skilled Aboriginal tradesmen building houses in remote communities. He had felt at home and took pride in this work, in a way he never did once Cyclone Tracy forced our move to Adelaide, then Canberra.

My background made me a perfect recruit, at least that’s what the program’s steering committee had thought. We had a strategy developed by a leading medical expert. It would be executed by a qualified program manager and funded and guided by one of Australia’s most promising philanthropic entrepreneurs.

Yet this time the program I was meant to be coordinating had stalled and Professor Johnson had started to raise the alarm and share his concerns about my work.

Six months into the program I hadn’t ordered a single tablet of ivermectin, approved a marketing strategy or let the clinics know we were coming, let alone written a protocol, hired staff, or obtained ethics and community approvals.

The research team behind the original ‘Farewell Scabies’ concept had already dosed 1100 people in their pilot study in the Northern Territory community of Galiwin’ku and their early reports heralded success. According to their timetable I should have dosed some 2000 people on Groote Eylandt and be well on my way to setting up a team of logisticians, medical assistants and social marketing staff to ensure the treatment of every one of the 10,000 people of east Arnhem Land.

By delaying, I had been told, I was harming the children of east Arnhem who were still succumbing to scabies and its complications.

But the frenzy to start had paralysed me. The truth was, I just couldn’t see how the program could work in the real world.

I had handled far greater pressure before. In 1997 as a twenty-four year old straight out of Sydney University, I had gone to work with a small French MSF team to support a provincial hospital in Ghazni, Afghanistan, six hours along a corrugated, mine-infested road from Kabul.

Working with Afghan staff, I had been tested on a daily basis by the hospital’s Taliban director, a one-eyed former Mujahideen commander who was more interested in feeding his troops than in the wellbeing of our patients. He asked me to give him MSF equipment and resources for his personal use—the 4WD we used to transport patients and the house we had rehabilitated as an isolation ward for infectious TB patients (he had just taken a fourteen year old as his third wife and she needed a home)—and he demanded I hire his friends, who had no medical training, as doctors in our hospital.

Eventually he grew tired of my polite refusals to cooperate. He turned up at the hospital one day with two Taliban guards, who had their Pakistani-made Kalashnikov machine guns slung over their shoulders. He ordered them to throw me into a container in the main square of town that was used to punish infidels and blasphemers.

The Taliban were gaining international notoriety at the time for cutting off the hands of petty thieves and stoning those accused of infidelity, so I was terrified. This commander had hospitalised a local Ghazni man recently, after locking him in a container for four days in summer for what the Taliban Ministry for the Promotion of Virtue and the Prevention of Vice considered an unholy act: the crime of trimming his beard.

As the guards dragged me down the hospital corridor, patients and staff watched silently. The commander told my translator to convey that this was his country and his hospital and I would obey his laws or suffer the consequences.

I didn’t argue with him. My staff, many of whom had already been abused by this man and his guards, and some of whom I had bailed out, did not move. Gerard, my MSF logistician, stepped aside as I called out to him for help. But he held my gaze steadily and spoke just four words with his strong French accent: ‘It will be alright.’ Somehow I believed him even as the sweat beaded on my face and made my arms slick.

At the end of the corridor, convinced that he had humiliated and terrified me enough to get his way in the future, the commander ordered his guards to let me go and they left the building.

But he did not get my ward or our car, nor did I hire his thugs.

Instead I suspended operations in the hospital. Gerard asked our staff to stand down. They went home and we returned to our compound and waited.

Two days later the Taliban director called for a meeting with me. He prepared Afghan tea, we sat together on the cold floor and he asked about my family. I asked after his. The translator spoke without looking at either of us. Finally the director apologised and asked me to return to the hospital. He had not expected me to take such ‘drastic action over a small quarrel between friends’.

I heard the unmistakable growl of an empty stomach and one of the commander’s young, unpaid troops shuffled his feet, embarrassed. Looking across at the director, I smiled and said I would be happy to return, but only under certain conditions: no more abuse of our Afghan or expat staff and no more demands to commandeer MSF donor resources for private use. And we would both pretend he was not keeping his personal guards loyal with meals sourced from my hospital.

For the rest of my mission, and even after I left Afghanistan, he respected our agreement.

So having stared down a Taliban commander in lawless Afghanistan, here I was in the Northern Territory, paralysed with anxiety and unable to start a health project in the safety and comfort of Australia. I wanted to quit.

But that’s not what happened.

•

This story is about how I ended up in remote Northern Australia with my wife, Tanya, and our three young children, about to inflict another unrequested, donor-driven program on Aboriginal people.

It is about how acting on the impulse to help Aboriginal communities can so easily go wrong, and almost inevitably does in an industry where well-meaning do-gooders have done genuine harm.

This story chronicles how government services, charities and research industries with, collectively, over 230 separate programs currently targeting Indigenous disadvantage, each year fly in and fly out of remote Aboriginal communities, often profiting on the currency of Indigenous despair.

It tries to make sense of the fact that those who have spent time learning about and working with remote Aboriginal communities say that things have only worsened, despite the billions of dollars spent each year.

But most importantly it is a story of hope and a better way forward.

There are no magic bullets, no quick fixes. But if decades of working with people in the most disadvantaged parts of the world have shown me anything, it is that the magic principle of helping is best described by the Yolngu people of Arnhem Land in two words:

Yaka gana.

Yolngu elders told me: ‘Don’t go it alone. Work with us and help us, but also learn from us how best to solve these problems.’

Yet decade after decade, program after program, intervention after intervention and billions after billions of dollars, going it alone is exactly what governments, donors and experts have done.

To be a genuine partner with those you seek to help means applying the principle of yaka gana before jumping in, and applying it to each major decision. It will save time and money and avoid heartache and harm in the long run.

But in Australia, where Indigenous populations are weary of being ‘done to’, yaka gana will also mean not having to pull the whole weight of programs, constantly needing to entice people to come out and ‘be helped’. It means meeting half way instead of wasting time and money when people are not ready, not interested or not able to carry some of the load themselves.

This, then, is a story told from the field rather than the boardroom, of how a program started on a dangerous road, then corrected itself to become a model of partnering as a way to address entrenched disadvantage.

It is about a two-year dance between a single-minded, principled public health doctor; his insightful, idealistic partner; and a passionate entrepreneur, Sam Prince. A twenty-eight year old risking his self-made millions, Prince was able to do what many before him, including governments and non-government organisations, had not been able to do: take time to listen, ask the right questions, then put the interests of communities first, with no excuses.

This book is about the challenge of trying to put those we seek to help before careers and grants, publications and research, consultancies and financial interests and advisory boards and donors. It is about how the newest players in the old game of charity recognised that their most valuable contribution was to listen, advocate, and then, in turn, to help people advocate for themselves.

And beyond the interests of donors, experts, governments, public health practitioners and even community leaders, this book is a celebration of quiet achievers, such as Rukula Gaykamanu, and those who support them in the field.

Rukula, a traditional healer with no formal leadership title, is the matriarch of a large family in east Arnhem. With steely eyed resolve she fights against the odds to protect her family’s wellbeing and future. She makes sure the children in her family attend school and are healthy, are kept away from destructive influences, and learn about both traditional laws and culture and how to succeed in the mainstream world. True leaders, such as Rukula, and the dedicated field staff who support them are why Aboriginal health programs sometimes do help.

And so this is, ultimately, a story about partnership. It is about the struggle to make every voice count.

•

For me, this story began with a rather odd conversation that took place in a suburban backyard in Australia’s most maligned capital city: Canberra.

2

LEAVING SUBURBIA

Sam Prince sat forward, his face impassive and his eyes focused on me. I had pushed back from the table, gazing somewhere in the distance and I spoke for a long time, challenging and testing Sam’s resolve.

It was early October 2010. The last of the blossoms in Canberra had given way to vibrant new leaves on the plum trees and there was a slight chill as the afternoon sun sank low. My three young children scrambled on and off the trampoline, appearing at the round wooden table for long enough to reach out tiny hands and take some more grapes.

I had just returned to Australia after working for years with Médecins Sans Frontières (MSF) in far-flung parts of Afghanistan, India, Niger and Uganda and at their US headquarters in New York. But having followed my conscience around the world trying to help children with malnutrition, I had neglected my own. My wife, Tanya, had returned to her work with the Australian government and I was a stay at home dad, finally spending time getting to know our two daughters and our son, who were all under five.

I was only a few months into my suburban parenting odyssey when I sat across our garden table from Sam Prince. He was already becoming a local legend of sorts by then but all I had heard about Sam, the son of one of my mother’s Sri Lankan friends, was that he had opened a few restaurants in Canberra and most importantly, as far as my mother was concerned, he had used some of the proceeds to start IT schools back ‘home’. And now he was in my backyard asking me to drop everything and move to remote Arnhem Land, 600 kilometres west of Darwin in northern Australia.

In the evening light he began weaving the kind of stories only Sam Prince can tell, and his words managed to still my ceaseless ruminations long enough for me to see something inspirational in this young man.

At 21 years, and while still in medical school, Sam had spotted an emerging trend (the demand for nutritious fast food choices) and started a healthy Mexican fast food store in a small shopfront in Canberra. He then managed to franchise the concept before his first store had even reported twelve months of operating profit. By 2010 the chain was one of Australia’s fastest growing franchises and Sam was worth millions. But he had also found the time to create IT schools in Asia and was still working three days each week as a junior doctor. He now had 160 staff working for him, but he was far from finished. There were new ventures to explore—biotechnology start-ups, education designed for the era of high-speed internet and philanthropy that would rid Australia of diseases, one at a time.

Now he was looking for an experienced MSF doctor to launch the operations of the brand new non-government organisation he was setting up, One Disease at a Time. The idea had originated during a discussion with an old medical mentor, who had been part of the national team that had eliminated the disease donovanosis from Australia a decade earlier.

Tanya sat quietly with us, watching and listening. She never grew tired of new adventures and as a result she had had more than a dozen different jobs by the time I had met her, including high-rise window cleaner, circus acrobat and Australian diplomat. She learned to fly before she had her driver’s license and by seventeen years of age she was looping and rolling planes over the glittering Clarence River in northern New South Wales.

As hard as she tried to fit into ‘sensible’ roles—mother, wife, diplomat—strands of Tanya had an unsettling way of squeezing between the boundaries and blowing free.

As the evening became darker and the mosquitoes began buzzing, Tanya took the children inside and Sam and I continued our verbal dance. Sam probed for answers, pushing for a commitment. There was already a trial running of the program to eliminate scabies, and the big roll-out was ready to go. Sam wanted me to be the founding coordinator of the initial two-year phase, focused on the east Arnhem region.

Where Sam saw potential, I saw problems and finally, with nothing agreed, he left. The children were in bed when I came inside and stood in the kitchen, scratching absently at fresh mosquito bites.

‘He wants us to help him eliminate scabies,’ I announced. ‘Like Frank Bowden eliminated donovanosis.’ Tanya didn’t respond and I fell back into my reverie for a few minutes.

‘He’ll never eliminate scabies; maybe control it at best. But Lawrence Johnson at the Northern School of Medical Research (NSMR) reckons it can be done with a drug called ivermectin. It could be a game-changer, like plumpynut.’ Plumpynut, a nutrition supplement I had used with MSF internationally, was transforming the way severe malnutrition was treated in the developing world.

Seven out of ten kids in remote Aboriginal communities had scabies by the age of one. Streptococcal skin infections were an inevitable partner of scabies because the itch from the mite was so intense that children, especially, were unable to help breaking their skin with all the scratching. Over time these skin infections put children at risk of chronic kidney and heart disease, so scabies was one of the reasons Australian remote communities had the highest rate of kidney and rheumatic heart disease in the world.

Children would stay up all night crying with the itch and the pain of infected sores, and their parents would be willing to try anything to ease the suffering. If anyone knew what could be done about scabies it was Lawrence, head of child health at NSMR and the top researcher in the field.

‘We have to find someone for Sam,’ I said.

‘He wants you to do it,’ Tanya replied.

I had just finished a stint in New York as a medical adviser setting up nutrition programs and changing international nutrition policy in an advocacy role for MSF. My background was perfect and Sam knew it. He had found me through family connections and had come to sit in my backyard for three hours to hear an unremitting litany of problems and challenges we would likely face.

He had taken note of each and every issue, never defensive. He had agreed there were many unknowns but had assembled an impressive support team. All he needed was someone to run a program that had already been designed by the world’s experts, and to ensure that his money was put to good use.

‘What do you think?’ I asked.

Tanya’s expression was unreadable. ‘I think we’ll probably go.’

I shook my head. ‘I don’t want to change focus again and live out of a suitcase. We have to find someone else to do it.’

‘Okay.’

There was a long silence as I reran my conversation with Sam; the strange moment of clarity I had experienced while we both slapped at mosquitoes in the dark, utterly absorbed in the detail of how to run an effective scabies program, had long been replaced by my usual rumination.

‘Why do you think we should do it?’ I asked.

‘I don’t think we should do it; I think we probably will.’

‘Nope. We have to find someone else. This isn’t the right time for us.’

Having started medical projects and launched advocacy campaigns, I knew the heartache and stress involved in a start-up program. The best plans unravelled as you moved from the boardroom to the field. Conflict with clinic managers, difficult negotiations with program partners and the day-to-day grind of establishing a program lay ahead of Sam’s wonderful idea.

Over the next few weeks we took the children camping. We spent time with family and friends, had Christmas in a tent and celebrated our youngest daughter’s second birthday. And we kept talking.

We read books about Arnhem Land, we researched whatever we could find about scabies, we spoke to experts and to people who had lived in remote Northern Territory communities. We looked for case studies of programs that had worked (or at least done no harm). And we called Lawrence, then Professor Graham Nicholls, who was managing the day-to-day operations of the scabies program for Lawrence and NSMR.

‘Yes!’ said Lawrence and Graham. ‘You can share the job between you and Tanya, you can bring your family along with you—that’s very appropriate in remote communities—and yes you can live in community if you prefer that to a place in Darwin.’

Lawrence updated me on the status of the program over the phone. ‘We are trialling the ivermectin mass drug administration in Galiwin’ku and early results are promising. By expanding the MDA to all communities in east Arnhem, we are confident we can eliminate scabies from the region. We have a draft plan to expand the program to all communities across east Arnhem, with a timetable for consultation and dosing and all you need to do is coordinate it. We also have an office here in Darwin for you and will provide you with experienced staff ready to help you with admin and logistics.’

‘I’ve told Sam that I want to live in the region and I won’t run the MDA if I don’t think it will be effective or accepted,’ I responded. ‘Lawrence, you assured me that you would put me in touch with Miwatj Health CEO Eddie Mulholland, who is closely involved in the program and ensuring community ownership of it. You mentioned that the program in Galiwin’ku was requested by the community and warmly received. So my question to you is this: is the plan already locked in or is there scope to adapt it to the realities on the ground after we arrive?’

I