Last month, an email was sent around to supporters and funders of the organisation, One Disease, to let them know of a recent development.
On the face of it, this was a good news-bad news kind of correspondence – the bad news was the organisation was destined to become redundant in early 2023. But the good news was that the redundancy was because it had achieved what it had set out to do.
“One Disease’s mission has been to eliminate the preventable disease Crusted Scabies, as a public health concern, from Australia’s Indigenous communities,’’ One Disease CEO Michelle Dowden wrote.
“I am writing to let you know that One Disease is in the final stages of achieving its mission and so has begun planning to wind down its operations to close at the end of January 2023.’’
So, it is a moment of celebration for One Disease founder Sam Prince, the doctor, entrepreneur and owner of Mexican restaurant chain Zambrero, who started One Disease in 2011 when he was only 26. Along the way, the organization with the support of his restaurants, and others, including the Snow Foundation and the Federal Government, has managed to reach this rare moment.
“It was a lofty target, the elimination of the disease,’’ Sam recalls. “It was hard because there were so many people who doubted us…. [but] after we made the decision, we went ahead like we do in this organization – we pitted our collective will against this disease. And so, I underwrote the program. This scabies program was underwritten by a burrito restaurant, right?’’
Crusted scabies is not one of those diseases that captures headlines: by dint of its name and because it is a problem among remote Indigenous communities, it lacks the profile of many other medical causes. It is the chronic and highly contagious form of the scabies skin disease. And its potential for harm is significant.
Crusted scabies is an endemic problem in the remote Aboriginal communities in the Northern Territory. It’s often diagnosed late, there is a high disease transmission, and it is associated with high mortality rates. The pattern of the disease is for it to be severe, progressive and debilitating and secondary bacterial skin infections can lead to a range of significant problems. Research shows that historically crusted scabies had a five-year mortality rate of up to 50 percent.
The focus of One Disease’s efforts was chosen by elders in the East Arnhem Land community who told Sam about the prevalence of crusted scabies and the skin infections among their young people. “We chose it because we didn’t choose it,’’ Sam says now. The evidence was compelling: seven out of 10 Aboriginal kids in East Arnhem Land under the age of one would get scabies at least once. But settling on crusted scabies as the focus for One Disease’s efforts was probably the easier part of the challenge ahead.
Sam says now that his naivety helped him navigate the difficulties. “I’m a curious mix of naivete and unbridled optimism,’’ he says. “I’m not paying myself a compliment there – there are a few issues in my organization that arise from my optimism. But you know what? I genuinely believe in it – it’s like a faith to me.’’
Photo of Sam Prince
The optimism was tested, especially in the first five years when the complex bureaucratic landscape made it difficult for Sam to get a sense that progress was being made. “You’re working in the Territory where there are many programs, so much pessimism and so much politics,’’ he explains. “We tried to create a bubble of optimism around the team…I thought it was going to be a scientific thing, but it wasn’t – it was a people thing.’’
The early work focused on improving detection and diagnosis of the disease, and then to prevent hospitalization. The organisation also worked with local health services to help achieve co-ordinated care that engaged families, community health centres and the hospital.
The programs were devised in conjunction with the local communities. They were culturally respectful and were embedded in the community to ensure self-management was at the heart of the treatment plan.
In 2016, crusted scabies was made a notifiable disease in the Northern Territory, which created the need for a more systematic approach to disease control. Sam remembers one particular case of a young girl, who had been hospitalized many times with crusted scabies. “There was a department threatening to remove the child from the mother, pointing the finger at the mother – the daughter has scabies and therefore the mother must be negligent. But we knew in our bones that wasn’t the case. To believe that an Aboriginal mother loves their children less than any other mother, just makes us furious,’’ he says.
“So, we went to the house – there was the grandmother, very smart, and she was ashamed because she had crusted scabies and that was why the girl was getting re-infected. It was our failure because we didn’t understand the situation…and it gave us the fire that we’re going to do this. And if you just consider that young girl, it actually makes it easier.’’
Even so, there was a time when the cost of supporting doctors and nurses on the ground left Sam financially exposed and threatened to “blow up’’ both operations. There was, he says, many times when he thought he was going to have to choose between his restaurant business and One Disease. “My team told me: “Just close One Disease. If you close One Disease you have no issues anymore,’’ he recalls.
“The elimination of crusted scabies required the whole health infrastructure to change…and we had to manage the team on the ground, the patients on the ground and we had to fundraise,’’ Sam says.
“It was a really high degree of difficulty – of all the organisations I’ve started – and I’ve started eight businesses, including technology businesses and fast-moving consumable goods businesses– this would probably be the highest degree of difficulty, doing that alongside scaling (up) a Mexican restaurant business,’’
“I wasn’t willing to stop. I wasn’t going to give in. And the last half of One Disease’s existence, we were on the rails – we knew exactly what we had to do.’’
One Disease established a small grants program that helped engage local and community health workers to promote scabies free zones. A range of organisations, from women’s groups to general service Aboriginal corporations and childcare providers who successfully applied for the grants were required to attend One Disease Health Skin Symposiums and workshops in the Northern Territory, Queensland and Western Australia.
A subsequent evaluation report noted: “Participation in these sessions improved the knowledge, confidence and motivation of recipients to engage in community action on scabies free zones…The health promotion activities funded through these grant projects include hygiene infrastructure and supplies, information sessions, the production and distribution of health promotion materials, hygiene education and activities, scabies treatment and skin checks. Collectively, these activities reached hundreds of individuals in over 40 Aboriginal and Torres Strait Islander communities across three states.’’
Sam has managed to grow his business while keeping One Disease on track, with the support of medical expertise, government and funders that enabled the organization to get on top of the crusted scabies problem. His business has progressed to the extent there are more than 215 Zambrero restaurants around the world and they have donated 50 million meals to those who are dealing with food shortages every day.
As Michelle spelled out in the May correspondence, One Disease’s two overall aims are now being met consistently – to improve the detection of Crusted Scabies and to keep its recurrences below five per cent.
She also outlined the work that remained to be done before the organization wound up at the end of January 2023.
“[O]ur key focus will be to work with communities to determine scabies prevalence and on the creation and maintenance of scabies free zones,’’ Michelle wrote. “Treatment of household and community contacts will prevent scabies transmission. If we can reduce the overall prevalence of scabies in communities, those who are more susceptible to Crusted Scabies should not progress to developing this disease.’’
For Sam, there is some time for reflection. “Some of the greatest doctors and nurses I’ve ever worked with are in the Territory, so you borrow their fire too’’ Sam says. “And we’d have wins – we’d find people who’d believe in us outside the field. We had great people in philanthropy who came to our aid…We had mighty forces working for us too.’’