And for people like the fifteen year old who had come running after us, who was born with competence and a strong sense of responsibility and was left caring for half a dozen children and picking up the pieces of the broken adults around her, a simple tablet of ivermectin had an important role to play in crisis care. It would allow babies to sleep, children to go to school and adults to re-enter the community. No magic bullet would ever eradicate scabies or solve all the social problems presented in any human setting but a break in the cycle of transmission would give long-term changes a chance to take effect.
The drug had been talked about in these settings for more than a decade. But no one had pushed MSD to take the next step. I added that to the list of things we had to do. I also resolved to develop an approach to what are commonly described as non-compliant households. Both jobs would require changes to the skin chapter in the Central Australian Rural Practitioners Association (CARPA) Standard Treatment Manual, and new training for clinic staff.
On our last night in Gurrumu, as I worried over CARPA and recurrent scabies households and convincing drug companies to do unpaid work for unprofitable markets, Tanya held my face in her hands and forced me to pay attention.
‘Don’t you get it? Gurrumu is scabies-free, apart from those three households! This is exactly where we hoped we would get to so you could case manage crusted scabies and complex households with recurrent scabies. Now we can develop tools to make it easy for clinics and program staff.
‘This is a great achievement. And we are only a few months in! If Talisha can do this on her first healthy skin day . . . well you haven’t saved the whole world yet but you’re doing a good job!’
Part of me resented being dragged away from my incessant worry but she was right—the size of the task in Gurrumu had already shrunk from an entire community to three households and two cases of crusted scabies. Every day spent walking along the dusty roads of remote communities speaking to the people who live with and treat scabies every day of their lives was a day closer to creating a program that worked.
•
In Gurrumu I also found a positive outlier: a case that lies outside the average, in a good way. This man had crusted scabies but didn’t need frequent clinic treatments or hospitalisations. He was keen to talk about his decades with the disease and what he had learned and I was just as keen to learn from him.
He was the patriarch of a house with few small children—most of his children were older and had left home. He used the same creams that the hospital used on crusted scabies patients, and he used them on a regular basis as a prophylaxis, or preventative. During one hospitalisation in Darwin Professor Manis had suggested he use the scabicide creams when he thought he had been exposed to scabies, and the urea creams to keep his skin from thickening and forming the crusts where scabies mites thrived and multiplied. This patient had been particular about it ever since he discovered he could control his own condition.
Importantly, despite the fact that this man had a disability, his seniority in the family meant he was always supported to shower and apply creams.
Clinics were treating according to their protocols and when that didn’t work they sent patients to hospital, where patients were treated according to a different set of protocols. Occasionally, curious practitioners would cross the tracks and bring back useful skills from the other side. The old patient from Gurrumu had teamed up with a nurse practitioner called Nathan who tried different approaches to prevent crusting, and who made sure he had ample supplies of the creams his patient needed.
The old man had learned that when using the creams on a regular basis with daily moisturiser to keep his skin supple, he didn’t relapse. It was a key piece of the puzzle.
I later discovered that another senior man with a long history of recurrent crusted scabies in another community had been relatively well for the last few years. It turned out that he, too, had the clout to get help from his family to apply the creams when needed and, just as importantly, he had access to a regular supply of creams from the clinic.
This patient had medical insurance that covered the costs of treatments. Rather than having to ask for a special favour to get these creams from clinics, he was entitled to a regular supply and had the voice to demand it. I had to find a way to give the rest of my crusted scabies patients the opportunity to self-manage like these two men had.
20
LISTENING
On the drive back to Nhulunbuy from Gurrumu we passed a sign that pointed away from the road and simply said: water. Just beyond that I guided the Troopy up to the base of a mobile phone tower perched on one of the few hills on the landscape. I stood at the edge of the steep rise with Tanya and our three young children, each gazing silently towards the ocean.
Before us stretched an ancient land that must have looked like this for millennia. Nhulunbuy was somewhere in the distance, but there was no sign of human habitation as far as the eye could see. We did not know this land and it did not know us. We ate our dry tuna sandwiches and I wondered what I would see if I had the eyes of a Yolngu elder.
Gurrumu and all the social challenges of recurrent scabies households were behind us. The challenges of another healthy skin day at Gunyangara lay before us. None of us were in a hurry to return.
We drove past the turn-off to the freshwater Latrim River, where the steep banks had been caressed by many hands. Several clay faces had been sculpted into the towering bank, and they appeared to watch over the swimmers. Then we passed the end of the runway, where we would sometimes watch the planes land, so close that we were sure they would touch down on our foreheads. And then the red-dirt road was tar again and all too soon we were back in Nhulunbuy.
The next day I spoke to Oscar, an eccentric Miwatj ‘fixer’ who had worked a lifetime in remote Aboriginal communities. A kind soul, he had a prickly outer shell that scared people away. Oscar survived the frustrations of remote work by taking regular breaks but sooner or later he would be back, working in a different capacity, for a different organisation, banging his head against the indifference, injustice and incompetence.
Oscar and I formed an unlikely friendship. Some of Oscar’s stories of Galarrwuy Yunupingu’s exploits struck me as far-fetched, but the longer I lived in Arnhem Land the more I believed them.
According to Oscar a small group of traditional owners could not agree on how some mining royalties should be divided, and they were holding up the deal with Alcan, leaving all the families with land rights around the Gove peninsula waiting. Eventually, Galarrwuy had enough. Oscar said that Galarrwuy turned up at the Land Council meeting with a plank of wood and struck the leader of the recalcitrant land-owners until he agreed on a division.
The pace of change in east Arnhem would have been frenetic when Galarrwuy assumed a leadership role in his community. He had moved faster than most, but must have found himself stretched thin as he tried to hold the region’s people together and keep all the parties at the negotiating table until a genuine agreement was created. He had stared down prime ministers and mining CEOs. He had dared to dream, time and time again, that a mutually beneficial alliance could be formed, but eventually he left the Northern Land Council. There were just too many competing interests changing hands too quickly. He turned his focus to family interests and the Gumatj group of enterprises.
By the time we moved to Arnhem Land, Galarrwuy was concerned about the survival of his people, national politics and multi-million dollar negotiations with Rio—the new name for the old Gove bauxite mine. Health, education and other matters were delegated to a strong Gumatj elder, Valerie Yunupingu, who was on the Miwatj board and was a bold, energetic leader. Her preoccupation was pushing Gumatj parents to make sure their children went to school since attendance had hit an all-time low of below 20 per cent at some schools.
Oscar had organised an informal chat for me at Shady Beach in Yirrkala with Larry, a retired school principal of Yirrkala and the homeland schools. Larry was a balanda who had lived in the
region for thirty years, married a local and spoke fluent Yolngu Matha and he could remember successful scabies programs run in the 1970s. He was keen to help me where he could.
While Larry and I were talking, we were joined by Djalangi Yunupingu, the Chairman of the Gumatj Corporation. I offered him a cup of tea made using the gas stove and billy that I always carried in the back of the Troopy for such occasions. The tea was the finest Sri Lankan stuff, I told Djalangi, and we hit it off immediately. When I canvassed the idea of a healthy skin day out at Gunyangara he wanted to get involved.
The sand at Shady Beach was fine and white. I burrowed my feet into its residual warmth as the air cooled in the late evening. The ocean barely moved and the small island off the beach looked close enough to swim to, if it weren’t for the crocs. As the evening wore on I grew quieter and spent more time listening. The other men did the same until the four of us sat for long stretches in silence, savouring another tea.
•
Rukula, true to her word, had continued with her new crusted scabies regime.
I had been developing an individualised treatment plan for each crusted scabies patient who was willing to work with me. In the acute phase, while they had active crusting and would normally have been hospitalised, intensive case management had been working well to clear patients of the mites, infections and skin crusting, so now I decided to offer a prophylactic, or preventative, regime to try to prevent relapses. If it worked I would have found a way to treat and manage crusted scabies in an endemic area, which would reduce the burden of scabies to the community and the clinics.
The households labelled as ‘non-compliant’ where we found recurrent simple scabies, would require a different, non-medical approach but at least I would find a way to ensure effective crusted scabies management became standard practice that could be accessed by all patients, not only the lucky few. Our hope was that this would reduce the burden of scabies in recurrent households, perhaps enough to motivate them to engage with scabies treatments again.
Though a preventative approach to crusted scabies wasn’t described in Central Australian Rural Practitioners Association (CARPA) manual, it used the same medications as the current CARPA guidelines for acute treatment. All the medicines were approved for use in the condition. Many years ago, scabies researchers in Darwin had proposed a preventative model using a scabicide cream, benzyl benzoate. They recommended the use of this agent, a decades-old cream, because it had a direct toxic effect on mites, almost like kerosene, and resistance was unlikely with repeated use. Repeated use of ivermectin or Lyclear (permethrin) was likely to spread resistance to these drugs.
I also included other components of the regime that the man at Gurrumu with crusted scabies had been using to keep himself free of recurrent disease. His regime included a cream to dissolve crusts and this made sense because mite build-up only occurred in areas where the topmost layer of skin (keratin) thickened into ‘cement-like crusts’. I included a keratolytic cream—an agent that dissolves keratin—and moisturiser as part of the regular preventative regime.
Professor Manis and the CARPA medical working group approved the regime for provisional use in health centres in east Arnhem. And then we turned our minds to how to implement this regime for our patients.
After two weeks of daily treatment with Rukula we moved to three times a week, then twice a week, then weekly and finally we moved on to the new preventative regime based on what I had seen in Gurrumu.
The goal was early treatment to prevent the hyper-infectious state from recurring. Rukula was keen to keep her skin healthy and prevent her family falling sick. I didn’t know it then but she had loved her work as a healer in Yalambra and longed to return to work.
We organised a day for Eva and I to visit Rukula at home with the medications. As we went through the options and discussed what I had seen work, she stopped and turned to me with a question.
‘Doctor Buddhi, look at my shiny skin. None of us here have had scabies since you and Eva started treating me. Can you tell other doctors and clinics how to treat this disease properly so that no family has to suffer in shame and pain like us?’
I felt myself grow warm. Didn’t she know we were still just learning together? We had only just launched a small-scale pilot program. She had mistaken me for an expert and it still might not work.
We committed to fortnightly skin checks and regular applications of calmurid (a cream that dissolved skin crusts) and moisturiser. Also, if she was in close contact with young children or people with obvious scabies she should treat herself early before mites had time to multiply.
Benzyl benzoate came in a glass bottle so wasn’t stocked in the clinics but I made some calls to senior remote health doctors in Darwin and soon had approval to add it as a non-standard item to Arnhem Land clinic drug supplies. That meant any clinic that wanted it and any patient that requested it could get supplies directly.
Rukula, finally, after a lifetime of struggling with scabies, had access to a simple, effective treatment that she could control. She now had the means to keep herself healthy.
•
‘What are you doing out there?’ I called to Tanya as she knelt beside her vegetable patch in the front yard. I found myself slightly irritated by the way she seemed to escape into that garden every moment she wasn’t working on the program or looking after the kids. Sweet potato vines had grown over the compost pile inside the banana circle in just two months since Oliver and I had arrived home from the Gurrumu healthy skin day. Now it was lined with thriving banana and paw paw trees. The rest of the front yard had a vege patch, a lean-to cubby made out of a trellis supporting climbing beans, a couple of baby coconut palms and a row of pigeon peas that shaded our front deck.
‘Look at these eggplants. I’ve done exactly the same thing but this one is pathetic and weak, these two look okay and this one here . . .’ She pulled one of them up to full height and it came to her chest. ‘Like it’s on steroids! Same dirt, same water, same environment, totally different outcome.’
I grumbled something about being hungry.
‘Don’t you think this is amazing? All you can do is all you can do. You plant the seed, water it, give it the best environment you can and then it is up to the plant what it does with all that. That’s what we have to do with the scabies program. We try to create the best environment possible for healthy, scabies-free skin. But what each person does with that is up to them.’
When she glanced up I had a dark, far-away look on my face. She stopped abruptly and turned back to the garden to finish planting some snake beans.
By the time she came inside, the family had started dinner so she slipped into the empty chair at the table and allowed herself to be bombarded by a tumble of announcements from the three children.
Finally I spoke. ‘I’ve pulled out of the six-week follow-up screening at Milingimbi. Elizabeth told me today that NSMR did a skin screening of most of the school kids for a study of theirs a week ago. It would be unethical of us to go one week later and do another one. It’s treating people like lab rats.’
I had been due to leave the following day for Milingimbi and had been looking forward to asking Elizabeth for her feedback on the program.
‘What was the prevalence there?’ Tanya asked tentatively.
‘Don’t know.’
We finished the meal in silence and I left the table.
•
I had been steeling myself to run a Gunyangara healthy skin week and when Tanya noticed my temper fraying, she reminded me that my job was to facilitate, not take over.
‘Ask who would like to put their hand up to run the event . . .’
‘Nobody is going to want to do that.’
‘How can you know unless you ask? Anyway, it’s their place—if a community like Gunyangara can’t organise its own healthy skin week then it’s not going to work anywhere else.’
The clinic manager and I organised a meeting of senior members of the Gunyangara community and
raised the fact that after several funerals and ceremonies, the clinic was seeing a lot of scabies. Everyone had noticed it and someone asked for a healthy skin week.
I opened my mouth to accept responsibility for the healthy skin week then shut it, remembering my discussion with Tanya. The clinic manager, who had invited the program into the community, said he did not have the time to run a healthy skin week but would help if he could. Tanya and I had proposed a list of prerequisites for working in a community, which included an invitation, and I now added another: the intention to act. Somebody in the community must be prepared to take responsibility for commandeering the scabies program in that community.
‘We can help with logistics if someone will mobilise interest and coordinate the event,’ I offered.
‘I’ll help.’ Djalangi nodded at me.
‘I’ll get all the households involved.’ I turned to see who had spoken. It was Valerie Yunupingu.
I could have given her a hug. And I could have hugged Djalangi for showing his support so that Valerie felt confident to take control, and Larry, for inspiring Djalangi to stop by on the beach, and Oscar, for introducing me to Larry. And I could have hugged Tanya for reminding me to take a breath before I jumped in and offered to take over. And maybe even those eggplants. You have to create the right conditions and then have the fortitude to step back and see what happens. If you keep pulling the seed out to see if it’s growing you’ll kill it.
Once Valerie and Djalangi showed their support a team formed around them. Together, we decided to start by moving door to door around Gunyangara and the nearby community of Barraka telling the story of scabies with senior community workers. We would then go back to conduct a healthy skin day at each community.
The team delegated the sponsorship work to Isabella, Judith and I, to provide families with cleaning products on the day, flea fumigation and other environmental controls that had been requested and food for an end-of-week barbecue. Isabella was an energetic balanda woman who had lived in the region for decades. She had married a local man and knew the community and its idiosyncrasies intimately. Judith was a community worker from Gunyangara. We made a few phone calls and it wasn’t long before plenty of Nhulunbuy’s organisations started to offer support. Momentum was building. I still wondered if Valerie and her team would manage to mobilise people inside the community but I was no longer facing the prospect of carrying the entire event on my own and I threw myself into my work with gusto.
A Doctor's Dream Page 14
