” 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.”
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.
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.org.au. 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?
What causes acute rheumatic fever?
What are the symptoms of Acute Rheumatic Fever?
Symptoms of ARF include:
- Heart problems including inflammation, chest pain, heart failure.
- Joint pain and swelling.
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.
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.
How can we help?
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?
- 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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