‘And the secret of a marriage, according to Claude Stein!’
We both laughed. One year ago we were juggling vocal workshops, pressure to dose 10,000 people with a small white pill and our own stress and discord. But having survived the journey together we were beginning to realise that we had been given a precious gift. The marriage may have ended but our friendship and relationship had not.
We decided to put our energy into the kids and into establishing a home in our community while working quietly at a few other projects. Maybe I could figure out something useful to contribute to the nutrition field. Small is beautiful and we would start at home.
On 9 August, I rode up the driveway of our new farm, 1500 kilometres from my starting point in Rocky, fifteen kilograms lighter and with a clear mind.
I held up my arms in triumph just as Tanya drove in with the kids and our new keys. For the first time in many years we had a place to unpack our well-travelled bags, and call home.
35
THE BLINKERS COME OFF
The next few months were spent establishing new equilibriums both at home and with the scabies program.
With day-to-day scabies operations being managed by Oliver and Chris I had time to write up the results of our first eighteen months of work for publication. Our model of care had significantly reduced recurrences of crusted scabies, had reduced days spent in hospital by 80 per cent and had also reduced episodes of scabies in family members by 75 per cent. It was the first major improvement in the scabies field in a decade and one that would have real benefits for families that had endured many years of suffering.
The One Disease team in Gove and the headquarters staff in Sydney were taking full responsibility for the field work in Arnhem Land now. When needed I joined operational team calls, but increasingly I stepped back from this as well and resumed clinical work as a doctor in New South Wales.
I kept thinking of my promise to Rukula to raise attention to the plight of families with crusted scabies and the need for more action. I called her for advice and she suggested she come and visit us on the farm and maybe meet people who could influence government decision makers. We discussed conference presentations and thought about a book.
And Tanya and I continued to renegotiate the terms of our life together and find ways to remain connected but give each other the space to grow.
Rhonda, the Ramingining clinic manager, was keen to have me help out as a GP. So not long after my ride I was on a small charter plane heading out from Darwin to give the regular doctor some well-deserved leave.
Scabies and skin health soon became the least of my troubles as I was coordinating care for people with chronic liver, lung, and kidney disease, and a host of other chronic conditions. Once I got into the rhythm of clinic work I enjoyed spending spare time going barramundi fishing with new friends and felt incredibly lucky.
One morning I was shocked out of my quiet routine when I drove out to Long Road, one of the homelands serviced by the Ramingining clinic, and saw a young man, still a teen. At once I knew I was looking at the familiar disfiguring plaques of crusted scabies. I had not known about this patient. He reminded me of Tyson, and had been hiding in shame and fear. His skin was the worst I had seen and I rushed to give him intravenous antibiotics and evacuate him to hospital as the severe infection in his blood was life threatening.
I couldn’t forget about scabies after all.
But as I organised his transfer I noticed something that should have been obvious if not for the fact that even shocking things become normalised if you see them every day.
He weighed just 36 kilograms.
His records showed that from about six months of age he had become malnourished and stayed that way for the rest of his life. His blood tests showed no other immune problem.
My work around the world on malnutrition programs had taught me that from gestation in the womb until three years of age was a critical time in a child’s development. As long as I was the scabies man and trying to find a useful intervention for scabies, I had had to put on blinkers and focus on scabies.
But now the blinkers were torn off. I was the doctor for all of Ramingining and this included children with Failure to Thrive.
I asked the clinic nurses to send my way any children who were falling off their growth curves and soon I was seeing a steady stream of young children each week. Most kids were fine for the first few months of life as all mothers were breastfeeding their babies. My patient from the Long Road homeland had been as plump as a Raphael cherub, but after six months he, like so many other children, ran into trouble.
At this age it is tricky to maintain good nutrition because the child is growing so fast and has such a small stomach capacity. Ideally every mouthful of food is packed with useful nutrients because displacing optimal feeds with empty calories can easily tip a child into malnutrition, especially during periods of illness.
The head medical nutritionist at UNICEF (the United Nations agency tasked with child health) once told me that nutrition was the poor cousin of infectious diseases in the medical world. Most medical schools provide little training in nutrition. It is seen as a social, political, dietary issue.
Yet malnutrition was behind half of all deaths in young children under the age of five, worldwide. And the damage from early malnutrition wasn’t just physical. All aspects of life—including school success, future income, relationships and the likelihood of developing acute and chronic diseases—were adversely affected by poor nutrition in those critical first few years.
Malnutrition, like scabies, is a symptom of entrenched disadvantage. Those least able to do something about it (children) bear the costs, and mothers bear the blame.
You only find malnourished children where parents’ skills and resources have been overwhelmed. Wherever you see malnutrition you see mothers who do not have a voice, in a family that has no voice, in a social group with no voice. Without a voice it is hard to secure the needs of a young child. And so there is also a role for some form of social nutrition insurance to protect the wellbeing of the vulnerable while the disadvantaged group builds capacity and political representation to make their voices heard—a project that can take decades.
We spend $3.5 billion a year on 232 Commonwealth programs all targeting Indigenous disadvantage, yet as a doctor in a remote clinic I had little more to offer a struggling mother than deworming pills and flipcharts describing what a nutritious meal looks like.
The cheap non-perishable food stocked at the local shops had little to offer a growing child. Transport to hunting grounds was difficult with no vehicle, and the logistics of providing a diet rich in vegetables, fruit, meat and dairy to a household with fifteen people were overwhelming.
By now many mothers and fathers had seen me in Ramingining and some had heard about our scabies work. When they realised I would not tell them to just wash their kids better or show a picture of a healthy meal and tell them they had to try harder, they started to ask for help. I felt the familiar pull of another partnership to find ways to give voice to their concerns. With Rhonda and two young community workers from the clinic, Joseph and Dino, we started talking to high school students and new parents about nutritious food for young children. Dino and Joseph were stars in the YouTube sensation the Black Ass Boys, an irreverent hunting show set in Ramingining, and their stories instantly connected with the young dads we spoke to. I committed our consultancy, EveryVoiceCounts, to the long road of supporting these parents.
Ultimately political and economic representation is the way to determine your own future, but there is a place for interim solutions that offer practical solutions and give voice to those struggling to be heard.
The challenge with any sort of assistance is how to attract funds to sustain long-term grassroots community owned programs, without losing focus and having the voices of those you seek to help drowned out.
As the locus of power moves from communities to boardrooms, the gap between actions and their conseq
uences grows as well. And this is where well-meaning intentions can run off the rails and do harm.
But passionate individuals can make a difference. The Snow Foundation had been an early and committed supporter of One Disease. Started by Terry Snow with a focus on helping people in need in his local area, the organisation continued its personal involvement with social welfare, health and educational projects. The foundation’s CEO had requested to meet me in east Arnhem while I was working on the scabies program and I jumped at the chance for her to see the real-life impact of the program her organisation was supporting. Like Sam, she cared about the detail of what the foundation was funding.
Nevertheless, even the most responsive funding bodies find it unsettling to contribute to a program with no plan or timeline. I struggled to find a way to put this ‘focus on partnerships’ into a methodology that would make sense to funders and bureaucrats.
Eventually I borrowed from the technology and creative industries that utilise management systems that promote learning and a focus on people. They call it ‘lean start-up’ and it involves constant trial, feedback and adaptation of a program or product so it better suits the customer’s needs. The focus is on adaptation and learning and how to create value rather than on implementing a fixed plan. It allows flexibility and therefore good partnership.
In the meantime I worked hard at connecting with my young, 36-kilogram patient. We started a slow dance towards engagement, trust and developing a treatment plan that he would buy into. I spent time with his extended family, who were very concerned about his health. While he was in hospital, his family used the creams and worked to rid the entire homeland of residual scabies.
On my way back home to Tanya and the kids, I stopped to visit my patient in his hospital isolation room in Darwin. As he saw me a flicker of a smile crossed his face and he took the magazines I had brought. The emotional scars of living with such shame and suffering ran deep and he, like Tyson, would be on a long road to recovery even once we had the scabies under control. I hoped we could do better for his children.
36
CENTRE FOR DISEASE CONTROL
CONFERENCE
When I returned to the farm from Ramingining, I found Tanya and the kids busy tending to a flock of chickens and guinea fowl and starting to create a vegetable garden where there had been a bare paddock. Tanya had big plans so I decided to help by fencing out the kangaroos. I learned how to put in strainer posts, tension wires and tie knots by watching a Kiwi farmer on YouTube. A week later we had a proud if not quite straight fence and Tanya went crazy with all the seeds she had been collecting.
I had been invited by Elizabeth Lee, the head of the Centre for Disease Control (CDC) in the Northern Territory, to come and speak at the annual CDC conference about our model for scabies control. After installing a pump to supply water to the garden, I jumped back on a plane heading north.
I stopped off in Gove to pay the One Disease field team a visit. I knew that Sam would do whatever it took to make sure the scabies program succeeded and my role was much more informal now but I wanted to make sure the team was settling in. As Penny and Oliver debriefed with me on the challenges and highlights of work in the field, I realised that one of Sam’s most important tasks would be to make sure the team felt supported. I well knew how isolating remote living could be, especially when you felt you were walking alone.
Oliver and I sat on Rukula’s verandah and spoke with her about the National Public Health Association conference meeting she would be presenting at in Cairns.
Unrehearsed, she told of her pride in her family and in their schooling. She described how her illness had made her feel like hiding and had made her family sick. She said she felt blamed for her condition and her family’s poor health; blamed by clinic staff and community members even though she had done everything they had asked. She said all she had needed was someone like Nurse Eva and Doctor Buddhi to listen to her and try her way. And it had worked. Oliver threw away the talking points he was going to offer her.
At the CDC conference I took the audience through the long journey that had led us to recognise crusted scabies as a neglected disease in Australia and lay out our plan going forwards. Nobody could say what the future held but right now the One Disease program had started work on all the elements of a comprehensive control program.
Professor Richard Manis and Elizabeth Lee were sitting in the front of the audience and I invited them to critique the program. Richard Manis said just one word.
‘Perfect.’
Elizabeth nodded.
And just like that we had made a valuable contribution to managing scabies and crusted scabies in remote communities.
The results of the Galiwin’ku trial of the mass drug administration (MDA) of the Northern School of Medical Research (NSMR) were finally revealed to the public at the same conference. No matter which way you looked at the figures the MDA had not eliminated scabies as a public health issue. The fact that it had spiked over the course of a few months meant, regardless of the final screening results, the best the MDA could do was achieve a temporary reduction of scabies rates.
Rates of positive blood tests for strongyloides had gone down and examining this result would make a valuable contribution to resolving the debate about the population health benefit of treating the strongyloides worm.
Annie, left on her own to explain the ivermectin MDA results and what had been achieved with taxpayer dollars, concluded her presentation by saying, ‘MDAs are resource intensive and hard to repeat year after year. And no scabies program can expect to work without first controlling crusted scabies.’
At the end of the conference, Elizabeth Lee made some short concluding remarks.
‘We have learned a lot this conference about the control of infectious diseases. In particular, when it comes to rheumatic heart and strep kidney disease, we need to do more on scabies. And we have learned that while ivermectin is not the magic bullet that some had hoped for, Buddhi and One Disease have shown us the importance of first controlling crusted scabies and a way to do so.’
By taking the slow road, by first getting to know our patients intimately and spending time in their world, we had been able to pivot early and focus on crusted scabies. In six months and for less than $0.1 million we had reached similar conclusions as the NSMR study that had cost taxpayers more than $1 million and taken two years. Eighteen months into the scabies program we had been assisting several health centres for more than a year to reduce the suffering faced by families with crusted scabies. With our partners we had changed clinical practice guidelines, been a catalyst for ivermectin to be registered for scabies and had brought together a research and development consortium to bring new scabies treatments to the field. We also had a regular program to service washing machines in several communities. But perhaps the most important legacy would be the long-term funding we had put in place to support a regional team of Aboriginal community staff to gain the skills to eventually lead the work on healthy skin.
It had been messy, confusing and sometimes frightening but we all had kept our nerve and focused on our only true bosses—the people we were serving. When it became clear we had arrived with a solution that didn’t fit the current situation, we accepted the feedback and turned the scabies program around. The message stick ceremony that elders of Yirrkala had asked for attested to the fact that our most important stakeholders believed we were now walking together, not alone.
37
HEARING RUKULA
Two weeks after my presentation it was Rukula’s turn.
I had been thinking of ways to get our crusted scabies patients—especially the young ones, such as Tyson from Yalambra—to take a risk and formally work with us. I thought it would be good for Tyson to see Rukula speak. So we organised for Tyson and his cousin Jacob to join us in Cairns at the National Public Health Association conference. Oliver had arranged for Raminy and the rest of our team to come, as well as Sarah, the Yalambra clinic manager who was one
of the program’s very first supporters. Rukula’s husband would accompany her, and the One Disease team from Sydney would be there too. It was a big group and after a year and a half of hard work, One Disease considered it a well-deserved opportunity for team bonding and motivation.
The problems began two days before the conference. Tyson didn’t feel well and wasn’t sure if he would be able to make it.
‘Tyson, we’re going to have a nice time, and we don’t have to spend all day at the conference. We can go and see the beach and see your family in Cairns.’ I spoke to him on the phone before I left the farm to catch the plane.
‘I don’t have any jeans or shirts to wear.’
‘Oh.’ I took a gamble. ‘Well, I understand if you can’t come to the conference but I would like to see you.’ Tyson grunted and I let him go.
The next morning he was the first at the airport, packed, dressed in his best and ready to go. The rest of the team turned up and found Tyson and Jacob waiting for them, and they gathered together in an excited gaggle and made their way to the check-in counter.
When it was Rukula’s husband’s turn to check in the woman at the counter read his medical clearance carefully.
‘Do you require oxygen, sir?’
He looked confused. ‘Yes.’
‘In that case I’m sorry, I can’t check you in.’
There was a pause. ‘No. I don’t need oxygen always.’
‘I’m sorry, sir, you already responded in the affirmative and I cannot check you in.’
Oliver stepped forward. ‘He didn’t understand your question. His medical practitioner has given him clearance for this flight, saying he doesn’t need oxygen.’
Sarah, the Yalambra nurse manager who was also his main carer, spoke up. ‘It’s right there.’ She indicated to a signature on the medical clearance on the counter.
‘Step back, please. I cannot check this man in to this flight in case of a medical emergency.’
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