In the evening light he began weaving the kind of stories only Sam Prince can tell, and his words managed to still my ceaseless ruminations long enough for me to see something inspirational in this young man.
At 21 years, and while still in medical school, Sam had spotted an emerging trend (the demand for nutritious fast food choices) and started a healthy Mexican fast food store in a small shopfront in Canberra. He then managed to franchise the concept before his first store had even reported twelve months of operating profit. By 2010 the chain was one of Australia’s fastest growing franchises and Sam was worth millions. But he had also found the time to create IT schools in Asia and was still working three days each week as a junior doctor. He now had 160 staff working for him, but he was far from finished. There were new ventures to explore—biotechnology start-ups, education designed for the era of high-speed internet and philanthropy that would rid Australia of diseases, one at a time.
Now he was looking for an experienced MSF doctor to launch the operations of the brand new non-government organisation he was setting up, One Disease at a Time. The idea had originated during a discussion with an old medical mentor, who had been part of the national team that had eliminated the disease donovanosis from Australia a decade earlier.
Tanya sat quietly with us, watching and listening. She never grew tired of new adventures and as a result she had had more than a dozen different jobs by the time I had met her, including high-rise window cleaner, circus acrobat and Australian diplomat. She learned to fly before she had her driver’s license and by seventeen years of age she was looping and rolling planes over the glittering Clarence River in northern New South Wales.
As hard as she tried to fit into ‘sensible’ roles—mother, wife, diplomat—strands of Tanya had an unsettling way of squeezing between the boundaries and blowing free.
As the evening became darker and the mosquitoes began buzzing, Tanya took the children inside and Sam and I continued our verbal dance. Sam probed for answers, pushing for a commitment. There was already a trial running of the program to eliminate scabies, and the big roll-out was ready to go. Sam wanted me to be the founding coordinator of the initial two-year phase, focused on the east Arnhem region.
Where Sam saw potential, I saw problems and finally, with nothing agreed, he left. The children were in bed when I came inside and stood in the kitchen, scratching absently at fresh mosquito bites.
‘He wants us to help him eliminate scabies,’ I announced. ‘Like Frank Bowden eliminated donovanosis.’ Tanya didn’t respond and I fell back into my reverie for a few minutes.
‘He’ll never eliminate scabies; maybe control it at best. But Lawrence Johnson at the Northern School of Medical Research (NSMR) reckons it can be done with a drug called ivermectin. It could be a game-changer, like plumpynut.’ Plumpynut, a nutrition supplement I had used with MSF internationally, was transforming the way severe malnutrition was treated in the developing world.
Seven out of ten kids in remote Aboriginal communities had scabies by the age of one. Streptococcal skin infections were an inevitable partner of scabies because the itch from the mite was so intense that children, especially, were unable to help breaking their skin with all the scratching. Over time these skin infections put children at risk of chronic kidney and heart disease, so scabies was one of the reasons Australian remote communities had the highest rate of kidney and rheumatic heart disease in the world.
Children would stay up all night crying with the itch and the pain of infected sores, and their parents would be willing to try anything to ease the suffering. If anyone knew what could be done about scabies it was Lawrence, head of child health at NSMR and the top researcher in the field.
‘We have to find someone for Sam,’ I said.
‘He wants you to do it,’ Tanya replied.
I had just finished a stint in New York as a medical adviser setting up nutrition programs and changing international nutrition policy in an advocacy role for MSF. My background was perfect and Sam knew it. He had found me through family connections and had come to sit in my backyard for three hours to hear an unremitting litany of problems and challenges we would likely face.
He had taken note of each and every issue, never defensive. He had agreed there were many unknowns but had assembled an impressive support team. All he needed was someone to run a program that had already been designed by the world’s experts, and to ensure that his money was put to good use.
‘What do you think?’ I asked.
Tanya’s expression was unreadable. ‘I think we’ll probably go.’
I shook my head. ‘I don’t want to change focus again and live out of a suitcase. We have to find someone else to do it.’
‘Okay.’
There was a long silence as I reran my conversation with Sam; the strange moment of clarity I had experienced while we both slapped at mosquitoes in the dark, utterly absorbed in the detail of how to run an effective scabies program, had long been replaced by my usual rumination.
‘Why do you think we should do it?’ I asked.
‘I don’t think we should do it; I think we probably will.’
‘Nope. We have to find someone else. This isn’t the right time for us.’
Having started medical projects and launched advocacy campaigns, I knew the heartache and stress involved in a start-up program. The best plans unravelled as you moved from the boardroom to the field. Conflict with clinic managers, difficult negotiations with program partners and the day-to-day grind of establishing a program lay ahead of Sam’s wonderful idea.
Over the next few weeks we took the children camping. We spent time with family and friends, had Christmas in a tent and celebrated our youngest daughter’s second birthday. And we kept talking.
We read books about Arnhem Land, we researched whatever we could find about scabies, we spoke to experts and to people who had lived in remote Northern Territory communities. We looked for case studies of programs that had worked (or at least done no harm). And we called Lawrence, then Professor Graham Nicholls, who was managing the day-to-day operations of the scabies program for Lawrence and NSMR.
‘Yes!’ said Lawrence and Graham. ‘You can share the job between you and Tanya, you can bring your family along with you—that’s very appropriate in remote communities—and yes you can live in community if you prefer that to a place in Darwin.’
Lawrence updated me on the status of the program over the phone. ‘We are trialling the ivermectin mass drug administration in Galiwin’ku and early results are promising. By expanding the MDA to all communities in east Arnhem, we are confident we can eliminate scabies from the region. We have a draft plan to expand the program to all communities across east Arnhem, with a timetable for consultation and dosing and all you need to do is coordinate it. We also have an office here in Darwin for you and will provide you with experienced staff ready to help you with admin and logistics.’
‘I’ve told Sam that I want to live in the region and I won’t run the MDA if I don’t think it will be effective or accepted,’ I responded. ‘Lawrence, you assured me that you would put me in touch with Miwatj Health CEO Eddie Mulholland, who is closely involved in the program and ensuring community ownership of it. You mentioned that the program in Galiwin’ku was requested by the community and warmly received. So my question to you is this: is the plan already locked in or is there scope to adapt it to the realities on the ground after we arrive?’
I could feel the program closing in around me and I was still fighting to keep a door open in case we needed a way out. I was excited about working with Sam and had heard great things about Lawrence and his team. But I needed time with my children, and my relationship with Tanya, which had never been tranquil, was struggling to find equilibrium.
There was a short silence on the other end of the line then Lawrence replied on behalf of the rest of the team. ‘Of course, Buddhi, this is just our proposal. We all have the same goal to do something about scabies and years of research
and experience have led us to this point but you will need time to get up to speed and make sure you understand the program fully.’
My sister, Kamalini, a highly experienced medical epidemiologist, had a strong aversion to the mass dosing of anything in Aboriginal communities: ‘Would we get permission to dose the entire population in a certain part of Sydney with a medication because rates of a disease were higher there than in the general population? No. So why is it okay in remote communities?’
Mass dosing had been practised in remote communities with albendazole for worms, azithromycin for trachoma and now with ivermectin for scabies and Kamalini complained that it was not a sophisticated data-driven disease-control approach targeting ways to reduce the rate of disease transmission. She also wondered why I would not just stick with MSF, which had a proven record of doing good work on the ground and putting beneficiaries first.
The answer was Sam. I would be working with a funder and decision maker who seemed ready to learn rather than impose. Despite his busy schedule, Sam had found time to visit my mother. She had kept him for hours, proudly showing him photos of her kids and the plaster Buddha statue that was all that remained of our home after Cyclone Tracy devastated Darwin in 1974. Then he had sat with me for hours. He clearly cared about the details. And leaving thousands of babies and young children to cry all night long from the unbearable itch and subsequent pain of broken, infected skin from such an easily treated parasite was unacceptable.
Once, in Niger, I had connected with a little boy in our makeshift hospital. He was the same age as my son, I guessed, not quite two and with those same searching, wide eyes and the same haunting cry my son had when he was sick. I took great pleasure in seeing the boy finally sit up after he had been so close to dying from starvation. Within a week his skin was radiant and by ten days the child was running around, irreverent and as full of life as any other two year old. Simply feeding children was not enough of an answer, I knew, but leaving them to die of starvation was unthinkable.
When I was leaving the clinic one evening, the boy’s mother came to thank me. Her eyes were full of tears as she described his shiny, healthy skin and I told her proudly that I had a two-year-old son as well.
‘Oh my boy is not two, doctor,’ she had said slowly, waiting for the interpreter to finish. ‘My son is five years old.’
My child had a universe of opportunity in front of him, while this boy, with the same cry and the same smile, was already irreversibly stunted, not just in height but inevitably in less visible areas, such as brain development. He had ahead of him a daily struggle just to survive.
And here were children suffering in Australia, with our mining booms and space-age medicine. It somehow made me and my children all the poorer. I could feel the steady pull of the work in remote Aboriginal communities and I started to see other reasons to go, including the chance to sit and talk to elders who were born into one of the longest-lived cultures in the world, and who had grown up watching their world undergo an incredible transformation.
We insisted on relocating to a community or regional base and I agreed to fly to Galiwin’ku on Elcho Island, just off the Northern Territory coast, to do some skin-screening work with NSMR’s pilot program and start reality testing the ‘Farewell Scabies’ program while the program team tried to find us some remote accommodation.
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FAREWELL SCABIES
While waiting for the trip to Galiwin’ku, I analysed the scabies elimination proposal that Sam had emailed me. It had been developed by the Northern School of Medical Research (NSMR) and, though only five pages long, it had detailed timelines and costings. The ivermectin mass drug administration (MDA) component was straightforward and the program also included a social marketing campaign and a plan to donate a washing machine to every house in the region.
The origins of One Disease and the scabies proposal was a conversation Sam had had with his mentor Professor Frank Bowden. Realising he would need to outsource operations to an experienced implementation partner, Frank had introduced Sam to Lawrence. The new philanthropy outfit One Disease at a Time would raise funds and support a scabies health promotion marketing campaign, while Lawrence and his expert NSMR team would implement the program. The field work of that program would be my baby, while NSMR took care of the back-end work, such as logistics and admin, and Sam focused on fundraising and oversight.
The NSMR team had branded the new scabies elimination program ‘Farewell Scabies—a personal empowerment strategy to eliminate scabies in the east Arnhem region’. It was a two-year strategy to rid Arnhem Land of scabies by June 2013.
Armed with a proposal and the target of raising $5.5 million, Sam and Lawrence began to build a steering committee to oversee implementation. Lawrence brought on board Miwatj Health Aboriginal Corporation, the community-controlled Aboriginal health service that ran several health centres in the region. Miwatj’s CEO, Eddie Mulholland, and Medical Director, Doctor Regina Merkel, joined the steering committee. Lawrence also invited the Northern Territory Department of Health to join through contacts with experienced public health doctor Margret Mathews, who had worked for decades on scabies and held a senior role in the department.
I spoke about nothing but the scabies program now, night and day, with everyone I came across. One doctor, who had worked for years in east Arnhem communities and spoke Yolngu Matha, said he saw a procession of NSMR research projects—dosing, testing, studying people—but he saw little change. There had been another MDA to wipe out scabies in 2006, he said; that time with a cream. Grants were won and publications completed, but people were not left better off and the scabies rate remained the same.
This doctor felt that the current model of consultation and approval made it very hard for community leaders to say ‘enough’. And he wasn’t the only one with that opinion.
The Farewell Scabies proposal was presented at the National Rural Health Conference where it and the concept of eliminating diseases one at a time were criticised as failing to recognise that underlying disadvantage demanded structural reform, not bandaid medical solutions.
I was very familiar with the debate of vertical standalone programs (targeting a specific issue, such as HIV or malaria) versus universal primary care that tries to work on building health services to deliver basic essential care, such as vaccinations and maternal child care. It dogged every program aimed at addressing disadvantage. Experience had taught me that the third side was always more effective than an either-or approach. Vertical programs with quick-fix solutions could serve a valuable role if they provided breathing space and visible early improvements and thus goodwill and the political momentum to advocate for changes to the underlying drivers of disadvantage. But every bandaid solution takes limited attention and resources away from long-term solutions.
Easy to sell quick-fix programs risk leaving communities less skilled and resilient than they were before, but when children are dying of malnutrition it is clear that taking the long, slow road through education and empowerment is not enough. The dream of every public health practitioner is to find the perfect balance between vertical programs that deliver quick benefits, and strategies to address the underlying causes.
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I was on my way to Galiwin’ku and transiting in Darwin when I read the first public commentary critiquing our scabies program.
Sam called me that afternoon as he regularly did for updates and to offer support, and he mentioned the resistance he was getting as he tried to raise attention for his fundraising plans. I wondered if it was because of the public health world’s long list of concerns about vertical programs.
But Sam was talking about an eminent economist who was critical of medical approaches to solving the symptoms of poverty and disadvantage. Economic development, not ivermectin, was the cure she had said, and even if a reduction in scabies could be achieved by this MDA, she wondered how sustainable the outcomes and programs would be if the underlying factors causing high rates of scabies wer
e not changed.
Sam’s words gripped at me. I had almost dared to believe that the scabies proposal could be that rare intervention that shifts the status quo enough to allow systemic changes to take place. I had wanted to believe it. But I had spent the past few months, while Sam and the NSMR team were in their planning phase, consulting as widely as possible, including with top logisticians. My initial questions had become concerns and now they were beginning to ache like open wounds.
That was the way my mind worked: first I found the holes. It often made life difficult for me but it meant not making early mistakes that could derail start-up programs. I could see where things could start to go wrong long before they actually caused problems. But now I could no longer convince myself that it was only me having doubts and my mind began to race in earnest, searching for a way through this maze and finding only dead ends. On the one hand I felt the pressure mounting to move on the MDA, while on the other I was increasingly unsure it was going to work. My fears poured out over the phone to Sam.
People I had spoken to who had worked on the ground in east Arnhem expressed doubts and there was resistance to the MDA and to medical solutions in general. I described my long conversation with NSMR’s environmental health expert Nicky Walker, who had worked for years in remote communities and who had left the Farewell Scabies program when she discovered that it was primarily going to be about the MDA rather than about deploying long-term solutions to address environmental health. I imagined the critics arranging themselves around us anticipating our inevitable failure. Sam listened respectfully.
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