There had been an early One Disease plan developed before I had joined the program that had taken the NSMR proposal and outlined a strategy to roll out the MDA according to the NSMR timeline. We were to engage government and non-government organisations, hire an army logistician to run the MDA with military efficiency and instigate saturation-level SMS marketing campaigns to denormalise scabies. Our biggest problem would be financial, the report said.
Lisa, our volunteer social marketing expert, did not agree with the ideas for the social marketing campaign. ‘We always trot out a footy star for these public health campaigns. It’s just way too early to be thinking about this kind of thing.’ She and I had formed an unspoken passive barrier to the enthusiasm for a mass media marketing campaign to denormalise scabies.
The skeletal plan Tanya had written in her parents’ lounge room late at night while I struggled to cope in Galiwin’ku made more sense to me. It was simple and short and it focused on learning. Importantly, it looked to a future we would not be a part of, so demanded that we build up and work from within existing infrastructure and community capacity, not lay something over the top that would leave a hole when our program was finished. She had included the MDA as an optional extra—for those communities that wanted it—as a kind of intensive effort when the follow-up support and clinic capacity would be ready to maintain lowered scabies rates. And the focus of any health promotion or social marketing would be to understand and highlight positive role models. Parents who, despite the odds, had a house and children without scabies. I liked that her program would give us time to develop the understanding and relationships we would need to do anything worthwhile on the ground without having to commit to an MDA.
But there were no defined deliverables, costings or detailed timelines in Tanya’s plan. It was more a process of learning what would help existing scabies efforts become more effective. I knew I could make this plan work in the real world but it would never be enough for all the stakeholders who had signed onto the program and wanted letterhead and timelines, goals, budgets, key performance indicators and responsibility charts. All of those things were in the current One Disease plan. You couldn’t ask for support with no plan and Tanya’s plan would not fly with donors.
The next day I travelled to Sydney to meet with Sam and told him that we had to be ready to walk away from the project. To my surprise, Sam simply nodded. ‘You’re right. To do this in good conscience means being able to stop if we’re doing harm.’
I was unable to answer for a moment.
‘What is it?’ Sam asked.
I shook my head. Something nagged at me but I couldn’t find it so I let it go and tried to smile. ‘You and I are both doctors—first, do no harm.’
Sam was an avid learner. If I could have chosen anybody to back me, on any project, I would have chosen Sam.
He was a finisher, a last-miler. If we committed to the wrong path, a never-give-up attitude would just compound the harm. But if we could focus the program on delivering real value to communities, Sam would be a rare, committed long-term partner to the Yolngu.
We had been sent to Arnhem Land with a medical MDA hammer, so everything looked like nails. If we wanted to be useful we had two choices: find a nail that would respond to our medical hammer or put down the hammer and keep an open mind about which tool to use. If we really wanted to do something about scabies then we could not be wedded to a medical or elimination model. Scabies would not change to fit our pre-determined models. We had to adapt our approach to fit its characteristics.
The evidence suggested that solving the housing crisis in remote communities would do more than any medication. But housing is another pandora’s box of complexities that few are keen to open so that left us with the alternative: to find a real nail that our medical hammer could fix. And if I could find something that was useful to both Jilory and Rhonda, Sam would make it happen. This gave me a clear goal.
After a day with Sam in Sydney I returned to Canberra and sat down to dinner with my family, deep in thought. When the phone rang, I excused myself from the table and shut myself into a bedroom while Tanya helped the children clear up and then guided them through the bedtime routine, reading three books to them, as she did every night, and turning out the light. It had taken them some time to get used to staying in their Acci’s (grandma’s) spare room while we waited to fly north, and the nights were already getting cooler as the weeks became months.
Tanya closed the door quietly and popped her head out into the lounge room. I was perched on the edge of the lounge, staring vacantly at the television. When I heard her, I turned and reached my arm out.
‘I’m sorry, Tan. I haven’t been very good company lately.’
Tanya twisted her mouth in a wry expression. ‘You haven’t really been here at all. Are you okay?’
‘I think so.’ I paused for a moment. ‘The house in Barraka has fallen through again. The family that was leaving gave someone the keys and their family moved in. Again. We could probably tell them to move out but . . . I wouldn’t want to start by kicking people out of their house.’
‘No. That would be a nasty beginning. Better cancel the flights then.’
Tanya slipped into her joggers and asked my mother to keep an ear out for the kids, stepping gratefully into the silence of the late evening under the blanket of stars where she would be free of my endless rumination.
The following morning we were woken early by my phone. There had been an outbreak of scabies on Elcho Island and NSMR were putting together an emergency response team. They wanted me on a plane that morning to join the team.
I packed my bag. My sister, Kamalini, had just been called to an ebola outbreak in Uganda. There, people had panicked and fled the area, abandoning the hospitals and health posts as those around them bled from all body orifices and succumbed quickly to the fatal disease. And here I was about to go on my own emergency response mission.
The truth was, I was relieved to be returning to the Northern Territory. It was frustrating trying to run the program from my mother’s spare room. It was frustrating having to worry about the basics of housing and vehicles, knowing that Tanya and the kids were on pause. I wanted to get started, to hit the ground running. I wanted to prove that we could find a better way to help; that if the program focused on working with communities rather than on them we could make lasting and valuable change.
7
CRUSTED SCABIES OUTBREAK
The working hypothesis of the outbreak response team was that the cause of the Galiwin’ku scabies outbreak was a teenage boy with hyper-infective crusted scabies.
The sudden spike in scabies over the last few weeks of screening had a focus in the secondary school where there were a number of teens with extensive scabies and sores. This led to the boy’s discovery.
Contact tracing is a mainstay of any outbreak response and we traced each of the infected teens back to their households where we found very high rates of scabies.
By the time I arrived, the team on the ground had a list of some twenty houses that we would target to try to stem the outbreak. A rapid response was needed to interrupt transmission to the extended contacts of these houses.
It was also vital to interrupt the unravelling of the ivermectin trial. In the last few weeks scabies rates in the families that were being screened had suddenly gone up and these seemed to be households that had come into contact with the crusted scabies patient.
Yolngu communities rearrange themselves like the sands of the ocean. People live in specific houses, and the older people are the less mobile they tend to be, but the younger generations, especially teenagers, follow the action or the food and camp wherever they find themselves at the end of the day. Teenagers in any culture are as itinerant as they are allowed to be, which makes them a perfect vehicle for transmitting infectious diseases.
Once again I felt the familiar drag of dissonance. At each of the twenty houses that had been in contact with the teenager with crusted sca
bies the team parked their vehicles, set up a marquee and called people out of the house. The neighbours craned to see what was going on. Since it was the middle of a work day the only people in the houses were the elderly, the sick, young children and people who had no motivation to do anything—certainly no motivation to engage with an emergency scabies response team, especially since it would make them the focus of the whole neighbourhood. I leaned against the side of one of the 4WDs and avoided looking at anybody.
A couple of old women wandered over from the shade of a banyan tree. They asked what was going on and Annie told them that our team needed everyone from each of the contact households to take one ivermectin pill to get rid of scabies.
‘Are you from one of these houses?’ Annie asked, reading out a list of house numbers.
‘No.’
Since the team would have to reach every Yolngu on the island at some stage anyway, they went through the consent forms and study questions with the two women and placed the tiny white pills on each of the outstretched hands.
We then headed to the main event of the day: the eradication of scabies from the house where the teenager with crusted scabies lived. This was a big logistical and environmental effort that was meant to be replicated each time a case of crusted scabies was found. Individuals with crusted scabies sometimes hosted millions of mites and would shed skin with over 4000 mites per gram, so they created a hive of scabies wherever they slept, sat and lived. All household members were usually affected and to interrupt transmission you had to isolate the individual, treat them in hospital and then clear the house and all its residents of the scabies mite.
People with crusted scabies were not able to control mite replication, so any residual scabies in the house when they returned from hospital would mean an immediate relapse and the cycle of transmission would continue. Thus, part of the crusted scabies outbreak protocol was to bomb the affected household with insecticide.
Our community workers had already visited the house and told the occupants to be ready. The teenager with crusted scabies had been airlifted out to Darwin hospital, encapsulated in an infection-control suit to ensure he did not infect the Careflight pilots and subsequent patients. We—two 4WDs and seven staff—arrived at his house and started to set up tables and chairs, and tents for testing urine and dosing ivermectin. All the items in the house were taken outside to prevent damage from the insecticide, then the windows and doors were closed and four permethrin insecticide aerosol bombs were set off. After they released their vapours the house had to be kept closed for two hours without anyone entering.
In the meantime all bedding and clothing was aired in the sun (ideally washed at high temperature first). Footwear that could not be washed was put into plastic bags and left for 48 hours in the sun and finally all eligible residents were treated with ivermectin. We started weighing kids and doing pregnancy tests, supplying scabicide creams to young children and pregnant women.
An hour into the event an old man from the household started shouting in Yolngu Matha. Our community staff said nothing, but kept working with their heads down. Eventually he stormed off. I was unsettled, but shortly afterwards we packed up and left.
A few days later one of the community staff members spoke to me about what had happened. The old man had been shouting at us for embarrassing him, labelling he and his family as sick by putting on such a public display. He was angry because the household was clean and proud and we had no right to make such a public show and shame him in front of his peers.
He was right. If the same had happened to me in my own home, I would have called the police. And two weeks later when scabies returned to my household I would be convinced that turning our lives and home upside down was a foolish thing to do.
Parasites, such as the scabies mite, instigate a biochemical interaction with their host, forming a molecular-level bond that we understand little about. As a result, in a simple scabies case the population of mites will increase rapidly but then stabilise at no more than about twenty mites.
Scabies mites move slowly, do not jump or fly and cannot live for longer than a few days off their host, even in optimal conditions, so to catch scabies from someone with a case of simple scabies was not as easy as I had initially assumed. It required prolonged skin contact, such as a parent sleeping in the same bed as their child. And a huge number of factors influence the susceptibility of the host, including immune suppression, age, nutritional status and even stress.
But crusted scabies patients shed skin with thousands of mites while walking, visiting family and friends and going to work. Sitting beside them on a plane might be enough time for the mites to migrate. For most people, scabies is not a big problem. It is easier to treat than lice and, like lice, it might have a social stigma but apart from the itch and any subsequent skin sores from excessive scratching, the mite itself poses no real danger.
For the person with crusted scabies, however, it is a different story. Their ineffective immune response means the scabies mites never form that sustainable equilibrium with their host and continue to reproduce, covering the body with progressively more mites, eventually numbering several million. These people are at risk of recurring attacks for as long as they are living in areas with high rates of scabies.
So to have any hope of controlling scabies, we had to ensure that the households of people at risk of crusted scabies stayed scabies free. But if the outbreak response in Galiwin’ku was anything to go by, the next time we tried to treat for crusted scabies we might be driven away with spears.
We had just destroyed the two most important ingredients for managing a chronic, recurrent and highly stigmatised disease: rapport and trust.
8
FAREWELL TO FAREWELL SCABIES?
At the end of the week, before I left the Galiwin’ku emergency scabies outbreak, I called Tanya late at night. She had left the kids at home with my mother and gone to the supermarket. She loved the supermarket when it was deserted. Long, anonymous aisles of bright colours and soft music and plenty of time to daydream. When her phone rang it sounded absurdly loud and she grabbed it out of her back pocket, her heart racing slightly. For a long moment she looked at the name on the screen.
Then she answered the phone and paced up and down the aisles, listening to me dump all my thoughts and emotions from the day, the week, the past few months. I had had an epiphany, I said, it was all so clear. I outlined the major differences in my new plan and said I had to drop the bombshell on the Northern School of Medical Research and Sam; should I call Sam tonight?
But Tanya heard the same things that I had been saying for months. She felt a dull nausea in the pit of her stomach as my sentences tumbled over each other and she chose her words carefully.
‘You see details that other people don’t see,’ she said. ‘I’m not sure they will understand the difference.’
‘Do you think I should call Sam? I could wait until the morning but by then my doubts may have reappeared. Right now I can see it so clearly, I know exactly how it can work and I have to tell him I won’t do the MDA [mass drug administration]. This is it, Tan, we’re free! He can find a logistician to dose people if he wants, but it won’t be us!’ I went on and on. Tanya walked up and down the empty aisle.
‘Sure, Bud, call Sam. Do it now, it is after eleven already. Let me know how you go.’
This time I was staying in a two-by-four metre container at the Shepperton College guest accommodation. The school in Galiwin’ku rented out rooms to visitors to the island when the rooms weren’t occupied by school guests. I took the phone outside to a small yard with a trampoline and a beautiful mango tree.
Galiwin’ku and many parts of east Arnhem are blessed with huge old trees—mangoes, tamarind and figs—that provide shelter during afternoons in the incapacitating heat. Now and then the leaves were parted above me by the breeze to display a sky full of stars. After everyone had gone to bed and the heat no longer grabbed at me it was easy to forget the constant drone of
airconditioners and the barking dogs and convince myself it would all work out. Part of me didn’t want to tell Sam his MDA would not work.
I dialled Sam’s number quickly and he had hardly finished answering when I launched into my spiel.
‘It’s not going to work, Sam’, I said. ‘The donation of washing machines without a servicing program in place will be a massive waste of money with transient benefit. And the MDA will not only be a waste of time, but if done in a heavy-handed manner to fixed deadlines it will do more harm than good in the long run.
‘Rates of strongyloides will go down and that is a good thing. And scabies rates, the reason we came here, may decline for a short while, but you would have to do these MDAs every few months to keep scabies rates low enough for long enough to have any public health benefit. It would require a massive infrastructure and expense and distract from other essential health services. And it would be undone by every funeral or ceremony or crusted scabies visitor. And nobody would want to keep doing MDAs every few months forever.’
As usual, Sam listened with his full attention. I wondered briefly if I had got him out of bed but I knew I wouldn’t feel this sure of myself for long so I pushed on.
‘Taplin’s work showed that rates can rise within months once scabies is allowed to return to an area, and that was without crusted scabies. We’re working in an area with the highest rates of crusted scabies in the world—yet nothing is being done for those patients.
‘It is a fantasy that the MDA will magically solve these problems, like some kind of cargo cult [a belief in the magic powers of inanimate objects], not an epidemiology-driven disease-control program. We’re putting all our faith in ivermectin. The more I think about it, the more amazed I am that it has gone this far.’
At this, Sam changed gears. He wanted solutions. I was starting to think I had one but I didn’t want a new set of promises made before I knew if we could pull it off.
A Doctor's Dream Page 6