A Doctor's Dream Read online

  Praise for A Doctor’s Dream

  ‘A Doctor’s Dream is a compelling story of how to address inequity in health care. This is how humanitarian medicine should be practiced, not just in developing countries but also in the developed world. This is a must read.’

  Dr Unni Karunakara, former International President, Médecins Sans Frontières, Professor at the Mailman School of Public Health, Columbia University

  ‘An absorbing and honest read that illustrates how money and good intentions alone don’t cut it in remote Australia. Surely if there is a map guiding Australia towards improved Aboriginal health, this book is the light that illuminates the journey.’

  Dr Andrew Laming MP, Member for Bowman, eye surgeon and Coalition spokesperson for Indigenous Health and Regional Health Services and Eye Health

  ‘I could not put this book down. It is full of profound insights encapsulated in a great story. Not learning from the consequences of one’s actions is a persistent problem in Indigenous affairs. Often we end up imposing by doing. The lean start-up model described in these pages is an innovative approach that places learning at the very centre of building relationships with Indigenous people.’

  Professor Peter Drahos, Director, Centre for the Governance of Knowledge and Development, Australian National University

  ‘One of the best books about health professionals working with and for local communities. This book shows what can be achieved by dedicated professionals who are prepared to make sacrifices, be patient, look, listen and learn.’

  Warren Snowdon MP, Member for Lingiari, Minister for Indigenous Health (2009–2013)

  ‘An incredible insight and miraculous journey that exposes the truth of a physically and socially crippling disease and gives voice to Yolgnu people. Buddhi’s courage and integrity shines through, together with his uncompromising focus on considering Yolgnu people first, which ultimately paves a better way forward. Powerful and gripping to the end.’

  Georgina Byron, CEO, The Snow Foundation

  First published in 2014

  Copyright © Buddhima Lokuge and Tanya Burke 2014

  All rights reserved. No part of this book may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording or by any information storage and retrieval system, without prior permission in writing from the publisher. The Australian Copyright Act 1968 (the Act) allows a maximum of one chapter or 10 per cent of this book, whichever is the greater, to be photocopied by any educational institution for its educational purposes provided that the educational institution (or body that administers it) has given a remuneration notice to the Copyright Agency (Australia) under the Act.

  Allen & Unwin

  83 Alexander Street

  Crows Nest NSW 2065

  Australia

  Phone: (61 2) 8425 0100

  Email: [email protected]

  Web: www.allenandunwin.com

  Cataloguing-in-Publication details are available from the National Library of Australia

  www.trove.nla.gov.au

  ISBN 978 1 76011 098 7

  eISBN 978 1 74343 868 8

  Typeset by Bookhouse, Sydney

  CONTENTS

  Authors’ note

  PART 1 FIRST, DO NO HARM

  1 Introduction

  2 Leaving suburbia

  3 Farewell Scabies

  4 First trip to Galiwin’ku

  5 Learning about Gatekeepers

  6 In between homes

  7 Crusted scabies outbreak

  8 Farewell to Farewell Scabies?

  9 The emperor has no clothes

  PART 2 START TO DO SOME GOOD

  10 Humbug

  11 Our new home

  12 Rukula and Yinarri

  13 Listening before jumping

  14 Healthy skin in Gurrumu

  15 Learning about crusted scabies

  16 The banana farm electrician

  17 Island hopping

  18 Return to Gurrumu

  19 Prevention

  20 Listening

  21 Gunyangara skin day

  22 Raminy talks

  23 Ceremonial life

  24 Rukula’s surprise

  PART 3 MAKING EVERY VOICE COUNT

  25 Better than a thousand commercials

  26 Modern day leprosy

  27 Proven value

  28 Neglected diseases

  29 Message sticks and partners

  30 WASH comes to life

  31 Rukula speaks

  32 Home repairs

  33 Miwatj celebrations

  34 Partnerships And separation

  35 The blinkers come off

  36 Centre For Disease Control conference

  37 Hearing Rukula

  Postscript

  Acknowledgements

  AUTHORS’ NOTE

  This is a true account, told from the perspective of Buddhi Lokuge. Contributors have been re-named except when they are public figures and appear in that capacity, or have asked to be named. In order to tell the story while protecting the confidentiality of individuals, particularly patients, other identifiers have been changed, including the location of some events. Yalambra, Gurrumu, Barraka, Arungana and Long Road are fictional communities used as settings for real events that occurred across the east Arnhem region and medical cases consist of actual clinical histories with certain identifying information changed or removed.

  Aboriginal and Torres Strait Islander readers are warned that the following pages may contain images of deceased persons.

  Part 1

  FIRST, DO NO HARM

  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 entrepren
eurs.

  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.