The characteristic odour grew stronger with every layer of socks removed and when we put some of the flaked skin on a slide under a microscope it showed thousands of fleeing mites. We were able to show her what had been causing her condition and when she saw the small creatures move under the microscope she sat back down heavily and nodded once, inviting us to talk.
I told her she was putting her feet at risk of gangrene and amputation by not being treated, explained how the mites lived, and described the treatment. She grunted her approval and together Peter and I rubbed the first application of urea cream into her lower legs and feet to dissolve the crusts.
And then the woman began to talk. Within minutes we learned we had a mutual friend, an Indian doctor married to a close friend. I looked up and grinned.
‘Small world!’ she said, and all three of us laughed. I felt sure that she would stick with the treatment now that she had finally begun.
I took Peter to visit Rukula at the end of the day. She had been preparing a PowerPoint presentation for the school about scabies and what the teachers could do about it. Oliver had organised for One Disease to speak about our work at the Public Health Association conference in Cairns and we had invited Rukula to be our keynote speaker. The Yalambra clinic manager, our first supporter, smiled as she watched Rukula speak to us, full of confidence.
At the end of Peter’s visit, he declared that in the years he had been visiting the Gove communities, he had never seen such healthy skin among the serious scabies sufferers as he had on this trip.
Peter had been the head of the Australian College of Dermatologists and had supported a number of programs to improve skin health. Like Professor Richard Manis, he was one of the rare doctors in an influential policy-making role who still treated patients in the field. The real-world expertise of these people, along with their depth of knowledge after decades of research and study, was invaluable. We had little in the way of statistics to back up the fact that we were seeing a vast improvement in wellbeing and fewer recurrences of crusting and relapses in these houses, but Peter’s experienced judgement meant the world to me.
We emailed Professor Manis the findings of Peter’s visit and he then emailed the steering committee and the heads of the Centre for Disease Control (CDC) and relevant sections of the Northern Territory Health Department.
This model for crusted scabies care should be adopted widely across the Territory and beyond.
He gave his approval for our approach to be formally adopted in the Central Australian Rural Practitioners Association scabies manual and to updating the CDC healthy skin guide that was used for community-wide scabies control. Our model of care was on its way to becoming the standard of care for families with crusted scabies.
28
NEGLECTED DISEASES
Our new approach to crusted scabies was helping patients and winning support and we were consolidating the model of care into protocols, treatment guides and clinic care plans. That freed us up to turn to the nightmarish issue of emerging drug resistance (and tolerance) to both permethrin (Lyclear) and ivermectin. Sam had committed to a long-term vision rather than a two-year plan, so now we had to consider that just over the horizon was the day when the first-line treatment used by all clinics in Australia for scabies would no longer work.
Lyclear was introduced to Australia in the early 1990s and at that time lab studies showed that it killed all scabies mites exposed to it within an hour. But with increased and widespread use of Lyclear, scabies mite populations started to develop resistance to the drug.
Lyclear works through its toxic effects on the mite’s brain and central nervous system. Over time, mites developed mutations that allowed them to pump permethrin out of their nervous system. By 2010 Lyclear had to stay in contact with mites for over eighteen hours to kill a population.
This meant that we now had to ask families to have a shower, apply the cream and then not wash any part of their body for a whole day. Most people must have been very determined, as few returned with scabies after treatment.
Scabies affected a population with no voice and little capital so the research and development (R&D) pipeline for new treatments barely existed.
Diligent researchers, supported by scarce public grants, had been studying alternative compounds, such as tea tree oil, and other agents that might work in combination against the scabies mite. But these passionate individual efforts were not enough to have a replacement ready for when Lyclear died a natural death.
Developing drugs for neglected diseases was something that had been at the core of my work with Médecins Sans Frontières (MSF) in New York. With its Nobel Prize money, MSF had set up a drug-development non-government organisation called The Drugs for Neglected Diseases Initiative (DNDi) as many of the diseases our field staff were seeing in remote parts of Africa and Asia had no effective therapies and no private-sector drug development investments. DNDi had already developed and marketed critical malaria therapies (and made them available for generic companies to copy and mass produce) and given rise to new R&D for many unprofitable parasitic diseases, such as sleeping sickness.
We had to do the same for scabies. We had to inspire donors and the public to want to invest in scabies R&D, and we had to bring the drug companies with us.
Head lice was a profitable problem so there had been R&D to develop new therapies in that arena. Scabies mites were functionally similar to head lice so I thought the new treatments had the potential to work for scabies. We had to push for public funds and research partners to test the compounds and then entice and/or push industry partners to get them approved.
I wrote a draft outline of an R&D plan for One Disease and started to discuss collaborations with existing researchers in the scabies and crusted scabies field. New drugs would be a long way off but we had a clear first target: to get MSD, the firm that owned ivermectin, to submit all their international safety data and get it formally approved for use in scabies in Australia. We discussed the steps that were needed and Sam started working his contacts. Before long he had identified an inspiring Australian not-for-profit R&D firm, Medicines Development, and together we looked at how we could revive the dormant application.
Sam met with the CEO of MSD, while the Medicines Development CEO and I met with MSD’s drug regulatory team. Soon we had a clear idea of what was needed to re-submit an application for Therapeutic Goods Administration approval and Medicines Development offered pro-bono regulatory support to the MSD ivermectin registration team to rework the submission. Within a year, with One Disease pushing from behind, MSD was able to register ivermectin for use in scabies in Australia. It was decades after ivermectin’s product launch, years after MSD was asked to submit it for registration in Australia, but less than a year after a small group got together and made a neglected population’s needs heard in the multi-billion dollar world of commercial drug development.
29
MESSAGE STICKS AND PARTNERS
By early May time seemed to have sped up. Since we booked our tickets home, Tanya had already started giving away anything that wasn’t absolutely essential. The house, which had remained echoey and bare for our year in Arnhem Land, became even sparser.
I was busier than ever tying off as many loose ends as possible, advancing all elements of the program to the point where Oliver and Jennifer could easily take over.
I wanted to have a Memorandum of Understanding (MOU) in place between the three partnering organisations—Miwatj, the Northern Territory Department of Health and One Disease at a Time—that formally listed responsibilities and allowed the sharing of data and access to clinical records and IT systems. I penned a three-page agreement and shared it with the steering committee. Eddie Mulholland, CEO of Miwatj Health, suggested we use Miwatj’s twentieth anniversary celebrations as our chance to sign the MOU for the east Arnhem scabies program. The federal minister of health, Warren Snowden, and Northern Territory ministers would be coming and it was a good time to celebrate the succes
s of the partnership between Miwatj, Northern Territory Health and One Disease.
The CEO of the health department wanted to come to sign the MOU in person. Then the head of remote health also decided to come. She was an important ally who had received positive feedback about our fieldwork from her health centre managers across the region.
Next a Yirrkala elder on the Miwatj Board, who I had worked with closely over the year, suggested that Miwatj present One Disease with a message stick. This was a traditional way to honour an enduring partnership between the two parties.
I allowed myself to fantasise that I could pull it all off without a hitch. We would leave Arnhem Land with the program running smoothly, our field staff consolidating our work and, when they were ready, expanding it as they were invited to new communities. I would retire to a little farm somewhere, at the other end of a phone whenever they needed help. It smacked of too-good-to-be-true but maybe . . . just maybe.
When I next spoke to Sam Prince we discussed how to scale the program nationally.
‘If we are invited to work in a community there must also be someone willing to work with us who really understands the place. A community liaison officer of some kind. Otherwise we are going in blind and each time you’ll have to wait a year for the One Disease person to slowly get to know people and build relationships.’
‘So the job of One Disease would be to support a local workforce?’
‘Uhhh . . .’ I prevaricated. Tanya and I had agreed wholeheartedly with Oliver and Raminy that employing Yolngu staff was one of the most important elements of the program but it wasn’t as simple as that. There was a shortage of trained community health workers; the complete dearth of local medically trained personnel meant we had no choice but to look to outsiders for a position like Penny’s. But in addition to that, several patients had commented that for confidential issues, such as their crusted scabies, which often affected private areas, they preferred someone from outside their community and kinship system to help. A non-Yolngu staff member caused less shame, they said.
Everybody, including us, came to Arnhem Land thinking they would be different; they would find a way to empower and employ Yolngu staff. Yet everywhere you looked, programs were staffed almost entirely by ngapakis. There were a few casual drivers, translators and other bit parts here and there but by and large the non-Yolngu ran the whole place, including our scabies program.
It wasn’t for lack of trying. Friends of ours, Bella and Tom, were among the rare balandas who crossed the borders and made genuine Yolngu friendships. They would spend much of their spare time out fishing with some of the young men Tom worked with at Rio. When Tom heard their friends had decided to quit work he asked why; they had seemed to enjoy their jobs. It turned out that a visiting inspector had noticed the young men didn’t have one of the required safety certificates so they had to sit an exam for it if they wished to continue work. The young men knew there was no point in them sitting a technical written exam. Tom spoke to senior management and after much resistance, got approval for the young men to sit the exam orally. They all passed with flying colours because they knew their jobs. They got their safety certification and continued to work as valuable members of the team. They didn’t need concessions, they needed the system to be adaptable and responsive.
I had seen the same sort of thing all over the world. Systematic disempowerment was why crusted scabies had mouldered away as a totally neglected disease in front of everybody’s eyes. It affected people with no mainstream voice. But, in a cruel twist, disempowerment was also why employing Yolngu staff was such a fraught issue. So I ended the conversation with Sam with a promise that I would put something together on the partnership model I had in mind. I knew it had to be localised, adaptable and responsive but short of training our own nurses I couldn’t yet see how it could also be fully locally staffed.
30
WASH COMES TO LIFE
Now that Oliver was on board and had been increasingly running the program’s daily operations since January, and all the local households with crusted scabies had completed the intensive phase of treatment and moved onto maintenance, I turned again to the washing machine project.
Thanks to Bruce and his beloved Westinghouse manual model we had a solution to the constant breakdown of the shiny new objects that were brought to remote communities with once-off program funds. We would support long-term servicing that could be performed by a team of local tradies.
Now I needed someone to research all the models available in the world, especially those designed for hard conditions in low-income markets, such as China and India, and see if there were other models that met the same simple manual specifications Bruce had given me.
Then we got word from a young engineer from Melbourne who had been working on sanitation projects in parts of central Africa and had contacted NSMR’s environmental health expert Nicky Walker for volunteer opportunities. She had referred him to us. Chris Sacks had an impressive CV. With first class honours in engineering and years of project management experience at a leading management consultancy, Chris was also a kindred spirit as he had walked away from the lure of the private sector to work as a volunteer in development work. We spoke by Skype a few times and I gave Chris the three-page brief I had prepared with photos and the technical specs Bruce had given me.
Within two weeks Chris had visited repair workshops in Sydney and researched the durability and serviceability of household machines, commercial machines used in laundries and machines used in the army and mining operations where heavy dirt and excess use is the norm.
Several models made by Electrolux (Simpson and Hoover) appeared to outperform the commercial brands in terms of cost per year of operation. Chris focused on manual models that were discarded by homeowners but that could easily be brought back to life and were then sold for under $200 by second-hand dealers. While not as sturdy and durable as the all-steel Westinghouse, they seemed a good option for ease of servicing.
In contrast, new electronic, all-plastic washing machines were selling for $800 in Nhulunbuy. They were 100 per cent guaranteed to fail under the harsh remote conditions, making the machines Chris found sound like a great bargain.
I organised for Chris to visit remote wash programs in Alice Springs and second-hand shops in Darwin and then spend time in Gove with Bruce. Sam and Jennifer gave the green light to his travel budget and I hoped that Chris would prove to be the missing link I had been looking for.
I remembered my conversations with Rukula, Raminy, Larry and Bruce. You can spend months with distant policy-makers and consultants and get a lot of nice diagrams and reports or spend one day talking to someone who has lived here all their lives and who already understands the complexities and you’ll find they already have much of the solution.
It seemed another piece of our program had started to fall into place.
•
I often hung out around the coffee machine at Miwatj during mango season, hoping to score a few mangoes brought in by staff who had overflowing mango trees, and it was there that I got talking to Norma about grants. Norma was the regionalisation coordinator at Miwatj but also the guru of finding money for programs from the Federal Office of Aboriginal and Torres Strait Islander Health (OATSIH), the government department that funded Aboriginal community controlled health services.
Norma mentioned that Eddie, the Miwatj CEO, had been in Yirrkala with the head of OATSIH and had seen a healthy skin poster on the clinic window from a skin day Oliver had run in Yirrkala. They had started talking about the crusted scabies work we were doing and Eddie had put in a good word for our program. The OATSIH head had indicated that they had a few hundred thousand dollars available for worthwhile projects and indicated that the scabies program should apply.
I thanked Norma and immediately followed up. The OATSIH contact was unusually forthright and explained exactly how I should write the application. The departmental preference was for giving away machines, she said, and I could use
the grant to set up the servicing program as an amendment later.
It was Friday afternoon, and she said that our best shot would be to send her a grant proposal to look at by Sunday because she was seeing the minister on Monday.
I called Chris and asked if he could write me a one-page outline and I would take it from there. He sent me a two-pager by lunch on Saturday and then—while Tanya went exploring remote beaches with Bella, Tom and Raminy—I stayed at home and turned Chris’s draft into a proposal.
On Sunday evening I sent off the WASH (water, sanitation and hygiene) grant proposal to OATSIH.
The next day I worked at the Miwatj office. When I got home Tanya was out in the garden, trying to neaten it up. Oliver’s former employer had agreed to let him stay in in his own house for the time being, so we didn’t know who would move in to our little park cabin after us. Tanya and our son had spent the afternoon gathering kilos of golden sweet potato while the girls played on the shady verandah.
Suddenly a little blonde head streaked past us.
‘Is Catherine still here?’ I asked as the little girl called goodbye over her shoulder and flew out the front yard. Our five-year-old neighbour spent a lot of her time, when she wasn’t at school, over at our house. She was going to feel lonely when her three little neighbours left.
Tanya watched the gate close softly behind Catherine. ‘It’s no good to move around like this,’ she told me. ‘The children feel like they have an extra sister and now they’re about to have to start all over again.’
It was time to put down roots. ‘The scabies program is growing up and ready to strike out on its own. Let’s find our kids a real home.’
A Doctor's Dream Page 18