The East Arnhem Scabies Program is our finest example yet of how closing the Action-Consequence Gap can quite literally save lives, change systems and create a better world. We ran straight up against powerful established systems in the early days but refused to play that game and now the East Arnhem Scabies Program is being lauded as a worlds-best scabies management program and the only one to ever have made a lasting and significant replicable impact on scabies in remote indigenous Australia. What did we do differently?
The East Arnhem Scabies Program started out as a great-sounding idea that began to seem like one enormous Action-Consequence Gap as soon as we started looking more closely. Indeed the closer we looked the more we realised: there was a reason scabies was still the enormous problem it had become since being introduced into indigenous Australia around the second world war. And the reason was not ineffective medication. So bombarding the place with medications was not going to be the solution.
Fortunately our funding partner – One Disease At a Time – was founded by an inspirational young doctor who has nerves of steel and he stood steadfastly by us as we changed his fabulous goal – ‘Eradicate Scabies in Australia’ to ‘eliminate crusted scabies as a public health issue in remote indigenous Australia’. Not as media-friendly but something real we believed we could do.
And we have. Beyond anyone’s wildest dreams. The best part? Doing something small, but real, has had the greatest effect on scabies ever seen in remote communities. Small and real trumps big and make believe everytime.
And our great secret was this: Listening. We listened to everyone who ever had anything to do with scabies. Patients, carers, patients, policy makers, patients, old-timers, patients, patients, patients. Did I say patients? Who would know better than patients what would and would not work in their real world?
We had begun developing a new chronic-care treatment program for crusted scabies when we had our big break-through: Yadadi requested that we treat her at home.
Crusted scabies is what you get when your immune system doesn’t mount a response to the scabies mite. As a result the mite reproduces like crazy on the host and the crusted scabies sufferer ends up with big, smelly crusts of dead skin and mites forming all over their body. It is disfiguring and hyperinfective so people who suffer from crusted scabies are unable to lead a normal life. And those who live in close proximity are generally unable to keep themselves scabies-free either.
It is a rare condition – while basically everyone gets scabies during their life in the remote communities of East Arnhem (seven out of ten children have had it by the time they turn one), there are only one or two people who have crusted scabies in each community. So the numbers are tiny but the effect is huge. Crusted scabies acts like a parabolic dish, collecting, concentrating and broadcasting scabies out into the community. At that point it seemed all people had focused on was the broadcasting. We were interested in the collecting. If we could stop the crusted scabies sufferers from contracting scabies the rest of the chain reaction would be stopped.
We had worked with a nurse in another community who had had success with home treatment of crusted scabies, though in very unique circumstances, and we had spoken to Yadadi’s local clinic staff already – they were on board. We were ready to try a modified chronic care home treatment system but we wanted Yadadi to go to hospital for two weeks to clear her skin completely of the scabies and then the home treatment would work, we were almost sure of that, but would it work without the initial two week intensive treatment?
There is a big difference between doing what you are told and solving your own problems so when Yadadi stubbornly refused to go to hospital we simply told her our concerns and agreed to give it a try at home. It was her decision and she was diligent about the treatment. Every day for two weeks she worked with the clinic staff and Doctor Buddhi, and at the end of that time her skin was just as shiny and healthy as it would have been straight out of hospital. Only she was empowered. And to this day Yadadi manages her chronic condition, something almost never before seen among crusted scabies sufferers in endemic scabies areas.
And Yadadi isn’t the only one. All over East Arnhem we are getting crusted scabies under control. As a result clinics are seeing a significant drop in their workload, since many presentations were the result of scabies and the subsequent skin sores. But more importantly people’s lives have been changed for the better.
Yadadi’s story is a great example of how people can solve their own problems when they are heard and supported.
Families in remote communities risk having their children taken from them if they are unable to stop them getting repeated bouts of scabies. But until we started focusing on the people rather than the illness, none of the available treatments had been able to keep a close family free of scabies when one member had hyperinfective crusted scabies.
Children are missing school, being bullied and crying themselves to sleep from the pain of infected skin sores and intense itchiness of scabies. We know that the long-term health costs are too high – the Yolngu have the worlds highest rate of rheumatic heart disease – but we must not remain oblivious to the social costs.
Yadadi wants to show that crusted scabies can be managed so that sufferers and their families can live normal lives, but for that to happen we need to change the way we treat scabies in remote communities. And for that to happen we need to change the way we treat people in remote Australia.
Yadadi helped us make a short video explaining what happened for her – she had been treated for crusted scabies in hospital and had felt so afraid, alone and ashamed that she basically hid in her house after that, refusing to go back to hospital and trying to avoid the social stigma of the disfiguring illness. It was only because she trusted the clinic nurse who introduced Doctor Buddhi that she agreed to talk to us.
We have taken Yadadi’s video off our web page because we had so much positive feedback that Yadadi has decided to tell her story herself, in person, to the Prime Minister herself, if possible. She wants every crusted scabies sufferer to have access to what she asked for: a cheap, simple treatment at home that changed her life and the lives of her family members.
We have seen families where children as young as one year old have been treated ten times for scabies and the resulting skin infections. This means repeated antibiotic injections, permethrin cream treatments and a host of resistence issues. When the child cries all night long from the intense itch and the pain of infected skin sores, and the families are unable cope, sedation is sometimes used at the clinic. We have seen families where several children have rheumatic heart disease and the early signs of renal failure by the age of 17. Seventeen.
We have not yet seen a single family where neglect or poor hygiene has been the cause of any of these things. In each case families are struggling against the odds to keep their children free of scabies. As a nation we pay the high hospital bills for treating the resulting life-long chronic poor health, as a nation we pay for the damage done to families and communities when children are taken away from families for ‘neglect’ and social structures break down.
But it isn’t just the families that need to change what they are doing. Once we provide the training and access to the medicines, Crusted Scabies sufferers can look after themselves. The families of the Crusted Scabies sufferers we have been treating rarely present at the clinics at all anymore, they simply don’t need to. Children are back at school, adults back at work and lives have changed.
We have changed treatment protocols, engaged clinics, trained community workers and are working with a drug company to research new medications without resistance. With Yadadi’s help, we have transformed the treatment of one of Australia’s most neglected diseases – crusted scabies. But there is more to be done. Advocacy at the highest level must convince the government to take over this simple, inexpensive treatment through every remote clinic. Rather than waiting for patients to present at hospital with a fatal illness, every remote medical worker must be trained in the chronic-care management of crusted scabies. These are tiny changes, they will result in a great cost and time saving and they will save lives. It only requires some persistent door-knocking. Which we are happy to do.
What we’d like you to do is sign up to our infrequent but always interesting newsletter so we can let you know where we’re up to. And if you can help us give Yadadi the chance to speak to the PM in person please let us know!
Meet our first community partner – Wayalwanga Wawilyun Guringgirrpa Marika, daughter of the great artist Wandjuk Marika OBE. Wayalwanga has taken on the challenge of bridging the gap between Balanda and Yolngu for the East Arnhem Scabies Program.
It is humbling to recognise that for all the expertise we may have in getting things done ngapaki way, we are almost completely blind when it comes to Yolngu culture. Wayalwanga is very relaxed and low-key, gently guiding us in the right direction despite ourselves. Her home is the arrival place of the Dhuwa moiety creation ancestors. Her family are art royalty and the Marikas have been credited with the birth of the land rights movement. This book gives a rare insight not just into the Marika clan but the often destructive transition (still taking place) up here in East Arnhem.
Terry Yumbulul painted the most beautiful-looking scabies mite you will ever see for the East Arnhem Scabies Program.
And here is a really interesting article about him!
Click through to meet Alex, the One Disease at a Time East Arnhem Scabies Program Operations Manager. Alex has worked on scabies in East Arnhem Land for almost eight years.