NACCHO #closethegap RHD : Aboriginal Australia has one of the highest rates of Rheumatic Heart Disease in the world but Take Heart


” You may not have heard of Rheumatic Heart Disease (RHD), but it is a killer in this country, particularly among Indigenous Australians living in the Northern territory. In fact, Australia has one of the highest rates of RHD in the world. And the worst thing? Almost every case of RHD is preventable if caught and treated early.

Rheumatic heart disease is rare and preventable, but Indigenous Australians are 19 times more likely to die from the disease.”

Dr Rob Grenfell

A documentary, filmed over two years across Australia, highlights the unusually high prevalence of rheumatic heart disease among the nation’s Indigenous community.


It focused on remote communities in the Northern Territory, where about 98 per cent of cases are Indigenous, and of those 58 per cent were aged between five and 14.

The documentary ‘Take Heart’, opens with a question: “What disease starts with a sore throat in children, and ends in open heart surgery, stroke, heart failure and premature death?”

It then takes a look into the lives of four young Indigenous Australians diagnosed with the chronic heart disease, highlighting a gaping healthcare hole in the Top End.

Darwin-based paediatric cardiologist Bo Remenyi said rheumatic heart disease was 100 per cent preventable.

“Rheumatic heart disease is a disease of poverty,” Dr Remenyi told SBS News.

“In Australian context, it’s related to poor housing, overcrowding, poor education.

“The saddest part of this is it is most common in the world in our own backyard – in Indigenous communities.”

Rheumatic heart disease is the end result of a contagious strep-germ throat infection that has been left untreated and advances beyond acute rheumatic fever.

Dr Remenyi said she feared the condition had been normalised in the Top End, where high rates of Indigenous children were diagnosed.

The Royal Flying Doctor Service says a South Australian program closing the city-country heart health gap should be rolled out nationally.

She said the majority of those diagnosed will suffer heart failure within four years.

“It’s all about recognising a sore throat, and treating it appropriately, with antibiotics, to stop the auto-immune reaction,” Dr Remenyi said.

“Strep-germ is contagious, so you spread it from one child to another child.”

Belyuen man Liddywoo Marni, 18, first developed symptoms as a three year old and after three open heart surgeries now has a mechanical valve.

“They told me that I had a bug in my heart,” he said of his diagnoses.

“I felt weak, and I felt sore throat.”

He has to have life-saving, blood-thinning medication daily and now teaches other kids in his community about the dangers.

‘Take Heart’ director Mike Hill has travelled the world filming documentaries, but couldn’t believe what was happening in his own country.

“The big take out is, it shouldn’t have to go to surgery level, because it can be stopped at a very early stage,” he told SBS News.

Although the condition has almost disappeared in non-Indigenous populations across the developed world, it still affects 30 million young people globally.

It is highly prevalent in parts of Africa, Asia, South America and New Zealand’s Maori community.

In Australia, refugees and those living in low socio-economic communities, are also at risk.

‘Take Heart’ is screening around the country.


For more information and to download the free app go to RHDAustralia’s website at RHDAustralia works collaboratively with the RHD Control Programs across Australian jurisdictions to educate and raise awareness of rheumatic fever and RHD with health professionals and communities and to collect and analyse burden of disease data. NSW clinicians can contact their local public health unit by calling 1300 066 055 to notify patients with suspected new and recurrent episodes of rheumatic fever and all patients with RHD aged under 35 years.



What is rheumatic heart disease?

RHD can develop when there is damage to the heart muscle or valves caused by acute rheumatic fever (ARF), an illness that causes inflammation of the heart and other parts of the body.
This damage can permanently stretch and/or scar the heart valves, which then affects the normal flow of blood through the heart and out to the rest of the body.
If left untreated, people with RHD can develop complications including an irregular heartbeat (arrhythmia), inflammation of the inner layer of the heart (endocarditis) and heart failure, have a stroke, and also experience complications during pregnancy. These conditions can lead to reduced quality of life, disability and premature death in young adults.
Heart surgery can help treat some of these issues, but it is not a cure.

What causes acute rheumatic fever?

Acute Rheumatic Fever (ARF) is an illness caused by your body’s response to an infection caused by group A streptococcus bacteria (commonly known as ‘strep’ bacteria). The strep bacteria usually cause throat infections (‘strep’ throat) and skin sores. When the body fights the infection, the immune system can sometimes over-react, by also attacking and causing inflammation in other uninfected parts of the body. This condition is called acute rheumatic fever, or ARF.

What are the symptoms of Acute Rheumatic Fever?

Symptoms of ARF include:

  • Fever.
  • Heart problems including inflammation, chest pain, heart failure.
  • Joint pain and swelling.
A bout of AFR can last several weeks and usually doesn’t cause lasting damage to the body, except for the heart valves. Repeated strep infections causing ARF can have a cumulative effect on the heart, causing more damage with each infection.

Who is at risk of developing RHD?

Aboriginal and Torres Strait Islander people are at high risk of developing RHD, particularly those living in rural and remote areas in central and northern parts of Australia, but Aboriginal and Torres Strait Islander people living in some urban areas may also be at risk.

Some immigrants from developing countries, as well as Maori and Pacific Islander peoples, are also known to be at risk of developing RHD.

The main risk factor is exposure to the strep bacteria that cause infection, thought to be due to overcrowded housing conditions, but genetics may also play a part.

This preventable disease threatens the lives of around 2 per cent of our entire Indigenous population. Most strep infections causing ARF occur in children and young people aged 5 to 14 years, although some people can still continue to get ARF well into adulthood, and it is more common in females compared with males.
Thousands of Indigenous children are currently at risk of developing ARF, simply by being exposed to the strep bacteria that cause a sore throat or strep-infected skin sores. If the infection is identified and treated quickly, usually with the antibiotic penicillin, they can make a full recovery. If not, they can go on to develop ARF and RHD, causing irreversible heart damage.

How can we help?

Today marks the launch of Take Heart, a documentary on RHD narrated by Walkley Award winning journalist Stan Grant. Please, take some time to watch it today. With awareness, we can help catch rheumatic fever in its early stages and treat it, and help prevent unnecessary disease and death in Australia.

 FROM Heart Kids

As is the case in developing countries, the champions of RHD in Australia need to collaborate and become engaged to control RHD. This coordinated approach requires commitment with professional organisations, health agencies, research providers, relevant Non-Government organisations (such as HeartKids), media, improved infrastructure in communities and community grassroots involvement.

What can be done?

1. Prevention:

  • Improve water and sanitation infrastructure within communities including upgraded water and operational sewerage systems, and landfill management
  • Functional water services, sanitation and waste disposal within Aboriginal houses
  • Establish and maintain health clinics within communities.
  • Improve information and educational resources on reducing the incidence of ARF/ RHD.

2. Building health system capacity:

  • Systematic screening and diagnosis of children in schools and communities
  • Further development of database of known and suspected ARF/ RHD patients
  • Patient follow-up to ensure adherence to treatment
  • Training of health workers to diagnose ARF and RHD
  • Standardisation of care by health professionals and workers.

3. Increasing Research:

  • Accelerating clinical trials for vaccines
  • Improving secondary treatment with new approaches towards new antibiotics and administration of antibiotics
  • Pathogenic assessment on genetic susceptibility and organism determinants
  • Development and evaluation of low cost echocardiographic screening and diagnosis
  • Monitoring the quality of penicillin supplies.

4. Improving access to medical and surgical services:

  • Reinforcing local and regional health facilities for initial treatment
  • Improving the accessibility of medical and surgical care available for serious RHD cases
  • Focusing on developing low cost and sustainable medical care and social support (e.g. accommodation, translation services, counseling, social services, and transport).

What is the Australian Government doing?

$2.5 million in funds has been provided towards RHD Australia to provide cost effective measures to help combat Rheumatic Heart Disease and Acute Rheumatic Fever.

A national database is being developed to support a register and control program that will initially start in the NT, WA and Queensland, and will provide training of health staff to improve diagnosis, and help patients, access regular antibiotics to prevent recurrence. Information is being developed to provide practical, simple measures for patients and to make the public more aware of the disease.

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