Rheumatic heart disease continues to rise in outback community

When Alec Doomadgee left a Cairns coronial inquest investigating the deaths of his sister and a child he helped raise, he was hopeful.

"That coroner wanted to leave a legacy of change," he said.

Three years on, the condition that claimed the women's lives, and which had been eradicated from "white Australia" decades ago, has almost doubled in the Gulf community of Doomadgee.

Rheumatic heart disease is an entirely preventable condition caused by untreated bacterial infections, which can permanently damage heart valves.

People diagnosed with RHD, or its precursor acute rheumatic fever (ARF), are required to receive ongoing Bicillin L-A penicillin injections every three to four weeks to prevent the disease from progressing.

Figures provided to the ABC by Doomadgee's primary healthcare provider, Gidgee Healing, show the number of patients requiring injections for RHD and its precursor condition had risen by 86 per cent compared with 2020 in the remote community.

"I'm sick of having people die at high numbers," Mr Doomadgee said.

"When they die, a part of me dies, a part of my story dies, a part of my history dies."

'Systems failed'

In 2023, Doomadgee made national headlines after a coronial inquest found Gidgee Healing and Yellagundgimarra Hospital failed to provide adequate follow-up care to three women who later died from the disease.

The inquiry revealed a health system that lacked the community's trust, included providers who were siloing patient information and blurred the responsibility between primary and urgent care.

"Put simply, systems failed," Coroner Nerida Wilson said.

Coroner Wilson handed down 19 recommendations, including establishing a local health council, improving access to laundry and shower facilities, and ensuring clinicians maintain a high level of suspicion for ARF and RHD when treating patients in remote communities.

Most recommendations have been implemented, with significant improvements being mad in hygiene and laundry access through partnerships with the charity Orange Sky, while better compliance with monthly injections has helped stop many patients' conditions from worsening.

But despite considerable progress, the number of people requiring monthly injections in Doomadgee have continued to rise.

A spokesperson for the North West Hospital and Health Service (NWHHS) declined to say how many people in the community currently had ARF or RHD but confirmed injection numbers had increased since the women's deaths with the majority of cases being ARF.

"Episodes of ARF have increased across the region and this may be attributed to increased surveillance [and] screening across the region, along with mandatory clinical training for all frontline staff," the spokesperson said.

"Bicillin adherence performance has improved significantly over the past five years (+26.2 per cent), indicating a substantial improvement in treatment coverage.

"The pace of some of the recommendations may seem slow but it's important to remember that many of the recommendations can only go at the 'pace of trust' with the community."

'What have we achieved?'

Overcrowded housing, limited access to laundry facilities and poor hygiene are major contributors to the disease, which is estimated to be 582 times more common in Indigenous Australians.

Gidgee Healing chief executive Manjit Seckhon said the root causes of the disease had not been addressed.

"RHD is an untreatable condition, if a person gets it, they're going to pass away with it," she said.

"It really is not a great accolade to improve the rates of managing something which can't be treated. The accolade will be in reducing the incidence of it.

"There must come a point where you just need to say … where is the measurable outcome? What have we achieved?"

Most people living with RHD in Doomadgee receive their monthly injections through the NWHHS.

Dr Sekhon said rates could potentially be reduced if ongoing RHD care was managed through the primary healthcare system.

"When you are helping one person manage their chronic health condition better, you're simultaneously helping this family be alert to the warning signs of the illness … that's the backbone of primary health care," she said.

"When a patient goes to hospital and they're seen within five minutes, they get their injection and they're out.

"Patients need to be educated properly so they truly understand why primary health care is important and why it's good for them to keep their chronic conditions managed."

Now living in Brisbane, Alec Doomadgee said the past two years had been the hardest of his life.

Once buoyed by the prospect of reform, he said nothing had changed.

"The greatest injustice of all is when good people sit and do nothing," he said.

"When the very coroner who laid her hat, her legacy on those recommendations is not even being heard, what chance I have got?"

"The numbers don't lie."

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