But Victoria was interested in my visit to Galiwin’ku and the work of the Farewell Scabies program and wanted to ensure that strongyloides did not fall off the radar. She had relayed everything I had said to Doctor Kathy Wilson, also of ARDS and a Miwatj clinician in Nhulunbuy for over ten years.
During my whirlwind tour of Nhulunbuy I gave Kathy a call. She arrived to meet me at my motel. Kathy had wiry gold hair and intense eyes. She spoke quickly and bounced straight back if I spoke over the top of her. She shared my urgent passion for justice, though we often argued the detail. She took me on a tour of the remote mining town and regional administrative base and I quickly discovered her deep dedication to her Yolngu patients and their communities.
ARDS, like many long-standing Aboriginal community-focused organisations, had a missionary history and was closely affiliated with the Uniting Church so, it being a Sunday, we ended up at mass. It was a lively affair with a visiting pastor from Papua New Guinea conducting an emotional service with few intelligible English words but wailing, crying and many Praise the Lords and Amens.
After the mass Kathy introduced me to several ARDS volunteers and medical contacts, including Nick and Frances Connor. Representing the best of the humanitarian ideal, Frances worked for the homeland health service Laynhapuy as a remote nurse while Nick worked for the CDC and as a general physician at the hospital in Nhulunbuy.
Kathy organised a lunch at her home with Nick and Frances and while Nick expressed his doubts about the program politely, Frances was more direct.
‘It sounds like another intervention developed by people who haven’t lived and worked in the region, and driven by pet interests rather than the pressing priorities of the populations.’
Nick tried to see something positive in the program but Frances wouldn’t have it. In her opinion it was a crazy idea and the notion of eliminating diseases one at a time expressed precisely the problem with centralised policy-making: a passion for an organism and a disease came before improving people’s overall health. Trying to manage issues as though they were totally discrete from each other in a complex, interdependent system was a good way to set yourself up for failure, she said. There was no malice in her tone and Nick and I had to agree with her. Kathy seemed conflicted. The MDA would be important for strongyloides control but she also wanted to see the program owned and run by the community.
Frances and Regina had expressed themselves in a way that left no doubt where they stood, and they were not alone. All over the Gove peninsula the response to the scabies program was luke-warm to hostile. I listened avidly and didn’t argue back. People were right to be concerned given the history of well-intentioned but ultimately harmful programs.
One evening I went to the Arnhem Club, Nhulunbuy’s main bistro and pub, and met a group of visiting clinic managers from east Arnhem. One of the managers at the table was Rhonda, a formidable bush nurse who had a reputation for being as tough as nails (and just a bit scary). She did not suffer time-wasters and I had been told she had once brought a visiting researcher from the Northern School of Medical Research (NSMR) to tears.
Rhonda had lived in Ramingining for a decade and ran a super-efficient clinic. She was quick to point out to me that visiting program staff and researchers were a pet annoyance.
‘Some of them turn up to a busy clinic, take our time and resources, then leave, and all we have to show for it is more paperwork. My first question is: how often will you be here? If you can’t be bothered to stick around and help out then don’t bother coming.’
Her words had not been aimed at me but I felt a sting. I was exactly the kind of fly-in, fly-out program staff Rhonda was irritated by. Nevertheless we hit it off, talking about our experiences in Afghanistan and Sri Lanka, where she had worked with the International Red Cross.
•
There are not many ways out of Nhulunbuy. For much of the year the wide, red, corrugated dirt road is cut off by the flooded Goyder River so to get anywhere you first have to fly to Darwin or Cairns. On my way back to Canberra from Nhulunbuy I stopped over in Darwin and called a meeting with Professor Graham Nicholls.
I was keen to keep the program designers closely informed of the realities on the ground and the holes I saw in the current strategy. I was starting to feel there might still be hope if we could create a program that was useful both to somebody like Jilory, an elder from Elcho Island, and to somebody like Rhonda, an experienced clinic manager from Ramingining.
Annie was on the same flight back to Darwin. While I had been in Galiwin’ku with her, so competent and efficient, I had almost convinced myself that it was just paranoia and my propensity to see holes that was causing my internal conflict. After a few days in Nhulunbuy it was clear I was not the only one seeing holes.
I subjected Annie to a cross-examination, bombarding her with all the reasons her pilot program could not have a lasting impact on scabies across east Arnhem. I was lucky to find in Annie a strong sparring partner but by the end of the short flight we were both enthusiastic about the path I thought we should take, and confident that Lawrence and Graham would see the wisdom of it.
My main problem with the MDA, I told Annie, was that the evidence suggested that scabies rates would soon increase without ongoing scabies control strategies in place. After a year of flying to homelands and tracking down individuals, Annie had still only reached 1100 people on Elcho Island, which was about 60 to 80 per cent of the estimated population. There was no plausible way that our program could wipe out every single scabies mite on every single person in the east Arnhem region.
And if we didn’t eliminate the mite completely and then implement border controls or other ways to stop its return, the work of the MDA would soon be undone, especially during times like funerals and other large movements of people that increased the overcrowding of houses. All studies supporting the MDA elimination we were attempting had been done on islands. East Arnhem was 33,000 square kilometres of open land.
Taplin, one of the early international scabies researchers, had done a study in Panama in the 1970s that indicated rates could return to pre-intervention levels in a matter of weeks. What was the point of coercing an entire population and spending huge amounts of energy and resources for a few weeks of reduced scabies?
I was also starting to worry about a condition called crusted scabies. It had reared its head in all the research papers I had studied yet few people other than scabies researchers had ever heard of it. It was a hyper-infectious form of scabies that could surely drive outbreaks of scabies from even a single infected individual.
If constant vigilance was needed to maintain low rates then we had to think of how this would be kept in place after the MDA teams and 4WDs full of ivermectin left for the next community. Strong women from the community, as Li Chuen’s study in Wadeye showed, could be the key. But then the program had to be linked to an infrastructure that could support the women, and it had to be something the women would want to support. The local health centres were the obvious choice to provide systemic support, as in Galiwin’ku, where strong community workers based in the health centre took a lead in many public health programs.
This meant we needed the health centres and their managers fully onboard.
Rhonda had said she needed more staff. To win the support of health centres we first needed to show our value through improved outcomes and a reduction in clinic workloads. And we had to help with treatment and follow-up, not just leave the results of our visits behind for clinics to deal with.
There was another thing. Clinic nurses and Aboriginal health workers could not prescribe ivermectin without a doctor’s approval. Developing a new treatment program based on a medicine that wasn’t relevant to most of the nurse-run clinics was a recipe for frustration. No, the tool had to do more than guarantee elimination from a single hit; it also had to be one that could be easily and repeatedly used, and ideally deployed by Aboriginal health and community workers. It had to be something existing staff on the grou
nd could use. Maybe ivermectin would be a useful medication for specific clinical cases if we could ensure that it was registered in Australia for scabies, that MSD submitted all its international safety data from developed countries, and that ivermectin was included in the Central Australian Rural Practitioners Association Standard Treatment Manual guidelines for remote health centres. But we were miles from all of that. In the meantime the scabies creams, while not as convenient to use, could be handed out by community staff without weighing, pregnancy testing and a doctor’s approval and so were currently more practical for repeated whole-of-population use.
To get long-term buy-in, since the population I was especially focused on was young children, I also wondered if we could include nutrition in our program work.
My passion of my previous international work was for antenatal and under-three nutrition. It seemed everything else was a bandaid if this fundamental building block of health and wellbeing was missed in a child’s development. Over ten years with Médecins Sans Frontières I had seen dramatic improvements in the way we could regain and protect good nutrition for children in remote and disadvantaged settings.
After the flight with Annie I began practising what I would say at the NSMR team meeting in Darwin and was confident that what I was proposing would be well received. Back in the office I found a message from NSMR’s head of child health, Lawrence Johnson, saying he would be joining the meeting. I felt energised. It would be even better to explain things straight to senior management. Just before lunch I sat down with Annie and she looked over the presentation I had put together. She was happy with the approach.
I was feeling light-headed after skipping breakfast so I wolfed down something greasy from the closest shop and returned to find Lawrence, Graham and Annie already waiting in Graham’s room. I began talking immediately. In just ten minutes over lunch my mind had found time to begin seeing flaws in my new approach. Gone was my confidence and good humour. I spoke with clipped, defensive tones, pointing out problems with the current program and suggesting improvements. My first time in Arnhem Land had been a roller-coaster couple of weeks and the tension in my sleep-deprived brain now infected everyone in the room.
Lawrence sat through my long-winded presentation and then gave a brief response: introducing ivermectin to clinics as a first step was a good prelude to the MDA but we had to focus on that and not get distracted by nutrition and expanding our work. Nutrition was beyond our scope. Then he stood and left the room.
Graham stayed behind. Graham was an excellent people manager. He had gathered around him a dedicated team of staff who were loyal to him because he was good to them. He was easy to talk to and had a way of coaxing people around what was bothering them until they found clarity. I began defensively, even claiming that NSMR neglected nutrition despite its importance but Graham rightly pulled me up on that, trying to tease out what was bothering me. We discussed the project for almost an hour before both Graham and Annie asked why I felt as though they were opposing my ideas. For the entire hour, as far as they were concerned, we had all been agreeing with each other!
‘Look, Buddhi, why don’t you just spend some time writing up your plan. I’m sure we’ll all agree. And our field administrator will take the day-to-day stuff off your hands. That might give you some space to think.’ Graham had remained calm throughout my barrage of questions and concerns.
I nodded and returned to the office NSMR had given me. I sat for two hours with a pen in my hand trying to fill out a form to give to the IT section so that I could log on to the NSMR system.
Later that night I spoke to Sam on the phone. Sam sensed something was wrong but I could not engage with him. After a short reprieve talking to Annie on the plane my anxieties had come flooding back.
6
IN BETWEEN HOMES
I returned to Canberra to visit Tanya and the kids. We had rented out our house and were staying in my mother’s spare room while waiting for NSMR to find us accommodation. Life took on a surreal sort of rhythm that revolved around trips to the Northern Territory and my mercurial emotions. Tanya had put everything on hold, never sure if this would be the day that I said ‘enough’ and gave Sam back this problem of his making or the day we all flew to the unknown of remote living. She told herself it was good for her to learn to let go, that life was really a kind of limbo anyway. But some part of her felt like a plug had been pulled and she was slowly draining away.
As I obsessed, constantly unloading my thoughts, Tanya would suggest I give up, just walk away. Other times she would tell me to stop agonising and just get on with it. There was no right answer, and she knew it.
But it didn’t get easier. We had insisted on staying in the region rather than in Darwin, so that we would have a 360-degree view of the complexities of the issues surrounding scabies. But accommodation in the communities and the regional base of Nhulunbuy was already bursting at the seams. The long-term agencies had their own houses that they guarded jealously and the rest of the houses often had more than one family in every room, up to fifteen people and sometimes more lived in one house. Cheap tents adorned the verandahs and backyards, broken-down cars were used as shelving. There was no room for a balanda (non-Aboriginal) family who wanted a whole house to themselves with working plumbing and intact asbestos. Who had the right to ask for that?
Miwatj, on behalf of NSMR, had located a house in Barraka for us to move into. Barraka was a short strip of road with houses on either side. It was a housing estate that had been built by Rio Tinto Alcan’s predecessors to house the managers of the aluminium mine, its power station and the port where tankers carrying heavy diesel would unload fuel and carry away alumina. Alumina was essentially bauxite mined from east Arnhem’s mineral-rich soil plus a whole lot of energy from imported diesel.
Barraka was a five-minute drive from the power and processing plants. At night, from Barraka, the operation looked like a giant Christmas tree on its side. During the day you could look the other way along a pristine white-sand beach that had never been touched by the heavy hand of human development.
When the condition of the asbestos-ridden houses deteriorated new accommodation had to be built for the mine managers, and several Yolngu families, some of whom had been camping on the beach nearby, moved into the old houses. A Tongan man with ties to the community ran a hole-in-the-wall shop out of the back room of someone’s house selling single nappies, cigarettes, white bread, meat pies and soft drink.
Barraka remained in that state indefinitely. Nobody wanted to earn the headlines that would surely follow if they demolished an entire remote Aboriginal community, and it was nobody’s job to build them new homes.
This community was unlike any other Yolngu community and with no clinic or school it didn’t seem like the best place to learn how to manage scabies. But there were few options. I had accepted the house and we rented out our place, packing and cleaning and moving into my mother’s spare room with a few suitcases while we waited for our flight. Then I got news that the key to the house had been handed to somebody else and it was no longer vacant.
It was too late for us to move back into our house and when, a few weeks later, another Barraka house was offered to us I accepted immediately and bought an old Toyota Troop Carrier—the ubiquitous aid-worker’s indestructible 4WD.
Things finally looked as though they were moving so I sat the kids down in my mother’s lounge room.
‘You know when we go to Arnhem Land we are going to be living right on the beach!’
‘We can go swimming every day in Almond Land!’ The kids squealed and jiggled at the thought of it.
‘Well . . . maybe not swimming . . . there are crocs up there,’ I said.
‘What are crocs?’ my oldest daughter asked.
‘Crocodiles. Big, scary . . .’
‘Oh yeah, I know what crocodiles are.’
‘I don’t want to live in Almond Land!’ My son looked as though he might cry.
‘I don’t want Ahman
Lann,’ our youngest girl repeated.
‘Yeah, Papa, what’s the point of living near the beach if you can’t swim?’
‘Well, there’s also a HUGE pool! We can go there every day!’
‘EVERY DAY?’ the three children chorused.
‘Every day,’ I said, satisfied.
Tanya listened to the conversation from the next room, forcing herself not to interfere. She hated making promises to the kids that she knew she couldn’t keep. Of course we wouldn’t go to the pool every day. And living just up the beach from crocodiles? It was all very nice to try doing something useful with our lives, even though it had already become clear that the promises of job-sharing and an equal partnership were not going to pan out the way we had both hoped, but if we lost a child to a crocodile she’d never forgive herself for being unable to accept a normal life and a normal job in a normal town. And just how were we supposed to keep three young children out of the calm, warm, blue ocean ten metres from our house?
Once the kids were thoroughly excited about moving north and wanted to get on the plane immediately, I took the Troopy to the mechanic. As the mechanic outlined the inevitable problems with a 1996 model 4WD, I felt the sinking feeling of having taken on another challenge with endless headaches.
At the time, One Disease was being established and apart from myself had no operations support or logistics capacity. It was, essentially, Sam in the office and me in the field. We had a line of credit from Sam’s personal funds but needed to attract donors to support a national roll-out. On my trips to Nhulunbuy I stayed at a motel and borrowed a spare desk at Miwatj, which often changed place. And I bummed lifts on charter planes from anyone flying out to the east Arnhem communities.
After a few repairs I dropped the Troopy—packed with a couple of tables, some mattresses and some kitchen equipment—at the car transport depot for its trip to Darwin by road. To get it to Nhulunbuy from Darwin would mean a barge trip but I would organise that when we arrived in Darwin.
A Doctor's Dream Page 5