Trachoma successfully eliminated in Australia through Indigenous-led health care

Aboriginal Community Controlled Organisations (ACCHO) achieved elimination status by working with non-Indigenous organisations over decades, to provide culturally safe, holistic health care.

Tania McLeod is a proud Jawoyn/Mangarayi and Wagedagam woman, and Program Coordinator in the Indigenous Australia Program at The Fred Hollows Foundation. 

“Eliminating Trachoma is a great milestone to reach. It's taken a long time, and it's great that we've achieved this. But it's not finished,” said Ms McLeod.

Trachoma is one of several neglected tropical diseases (NTDs) caused by a variety of pathogens. 

“Trachoma is a type of chlamydia infection that is passed through contact. It's a disease of poverty. It's quite a painful, inflicting condition if not treated. So the chlamydia gets into your eyes, it starts to produce mucus, and other things.”

“If untreated, the eyelids will start to turn in and scratch the cornea, and you can go blind. But it’s quite a preventable disease, and treated with antibiotics.”

Some Trachoma patients undergo surgery for Trachomatous trichiasis (TT), an operation to surgically repair the eyelids.

Elimination status is reached when under 5% of the national population has Trachoma.

Ms McLeod said that at the time the WHO declared Trachoma endemic in Australia, it was rare for a developed nation to have the disease.

“Australia is a developed country, and we have a universal health care system.Other countries find it hard to believe we still have Trachoma, but we do,” she said.

“Elimination is hard to sustain. Because poverty is very hard to treat, or face. We can't take our foot off the pedal.”

“What’s important is that the self-determination from our Aboriginal and Torres Strait Islander health organisations cannot be underestimated in reaching elimination.”

The ACCHOs lead the way

Ms McLeod said that Aboriginal and Torres Strait Islander leadership brought about elimination status. 

“It's taken a long time to reach the elimination status in Australia, because a lot of systems needed to be built to support the process. And because Trachoma is a reoccurring condition.”

“All of this was led by our Aboriginal and Torres Strait Islander health organisations and leaders. They advocated for, and demanded, better living conditions, and being involved in decisions about their communities.”

“The ACCHOs are best placed to support and treat Aboriginal people because of their understanding of cultural safety, and of the complexities. A lot of people have comorbidities.”

“And our role as the Foundation, from day dot, was to walk beside the ACCHOs.”

“Australia should be grateful and acknowledge those people, because Trachoma wasn't on the radar until Aboriginal and Torres Strait Islander people got their allies and supporters to come and have a look. And one of them was Professor Fred Hollows.”

The Hollows Legacy

Ms McLeod said that The Fred Hollows Foundation prioritises the principles of cultural safety. 

“The story goes that, back in the ‘70s, Fred Hollows was invited up to Kalkarindji to have a look at eyes up there with the Wave Hill mob.”

“And that's where he saw Trachoma. In Redfern, with men from Kalkarinji, Djagarabu. When he went up to see them and had a look at their eyes, I think he was shocked about the conditions that he saw.”

“So Fred and our Aboriginal leadership — Gordon Briscoe, and Jilpia Jones, and Trevor Buzzacott — formed the National Trachoma and Eye Health Program, with funding from the Commonwealth Government.”

“That was the prelude to the WHO declaring Australia as having endemic Trachoma.”

“In 2006, the Australian government signed on to the The SAFE Strategy to eliminate Trachoma.”

“The Indigenous Australia program has a really good knowledge of the history of the work in Australia that Fred and Gabby, and others, did. We work hard to continue that approach, and those principles, that the National Eye Health Program had in place when working with Aboriginal people.”

A holistic approach

Ms McLeod said that eliminating one disease requires facing systemic health challenges.

“Fred thought, maybe we can help support changes through other things, such as housing, education, human rights, participating in the political scene and in our country.”

“We're finding Trachoma in the tri-state area (WA, the NT and SA), and up into the west like Kaurindji, and in the Torres Strait.”

“Anywhere where there's a lot of dust, poor housing, poor water access, and people are unable to wash clothes, unable to have washing facilities. That’s where you'll find environmental diseases.”

“Over many decades, the housing in remote communities has been really substandard. And that hasn't really changed much. We still see calls for support with housing. And we know you need to have a house to be healthy.”

“We keep a holistic approach and can also support other diseases of poverty, like rheumatic heart disease (RHD), scabies, ear and nose infections, and bacterial conditions.”

“We educate children and adults about good hygiene. Making sure they are not frightened to go to the clinic, or to have an appointment with an optometrist or their nurse.”

Ms McLeod said that making eye health a national priority would help elimination status.

“It's currently not, so that's a bit of a barrier. That's why we see things like cataract surgeries as ‘elective.’ And they're the first things to drop off when you have pressures on the health system.”

“Some people can't access glasses to read or watch TV. And some kids need really expensive glasses if they have myopia. There are no MBS items to support school screening or to purchase glasses. So, that's what we're trying to do.”

Almost a decade ago, an MBS item was advocated to support diabetic retinopathy (DR) screening. 

“We're looking at having another item to do with school screening, on the preventative side. In the NT, we don't have a really good low-cost spectacle scheme.”

“So there's a few things that need to be tightened up, and we're working with the First Nations Eye Health Alliance to do so.”

Collaboration across health systems 

Mr Mark Nevin is the CEO of Optometry Australia.

“Eliminating diseases like Trachoma requires genuine collaboration across the health system. GPs, optometrists, ophthalmologists, nurses, Aboriginal health practitioners and other allied health professionals all have an important role to play in prevention, early detection, treatment and ongoing care,” said Mr Nevin.

“But clinical care alone is not enough. The most effective health outcomes occur when care is culturally safe, community-led and delivered in partnership with Aboriginal and Torres Strait Islander peoples.”

The WHO recognises Australia

Dr Anthony Solomon is the Medical Officer for the Control, Elimination and Eradication of Trachoma, Guinea Worm and Yaws, with the WHO. 

“Trachoma, like 20 other diseases and disease groups, is labelled “neglected” because for decades it’s been given insufficient attention by health systems in proportion to its contribution to overall human suffering,” said Dr Solomon.

“Governments, funders and the research community are now becoming aware of what a difference they can make by empowering affected communities to control, eliminate and eradicate these diseases.”

“The central role of Aboriginal and Torres Strait Islander community voices in policy development and programme implementation for elimination of trachoma as a public health problem in Australia is a great example of the kind of strategic shift called for in the global road map for neglected tropical diseases 2021-2030.”