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Until we change systemic health care issues in remote communities and prioritise culturally safe health care, Indigenous children and young adults will continue to die from preventable heart disease, experts say.
A systematic review published in First Nations Health and Wellbeing – The Lowitja Journal highlighted the effectiveness of prevention programs to prevent, reduce and control acute rheumatic fever (ARF) and rheumatic heart disease (RHD).
It found that programs that were Indigenous-led and community-based offered a better chance of preventing and eliminating ARF and RHD.
As lead author of the review, Ms Lorelle Holland, from UQ’s Child Health Research Centre told InSight+, no one is more invested in their community than community members.
“Local Aboriginal health practitioners wear the burden of health disparities in the community. When you empower that person, they are more likely to be well engaged and help lead necessary community health programs to achieve sustainable and beneficial change,” she said.
Rheumatic heart disease: a preventable but persistent burden
RHD remains a significant global health issue, with over 40.5 million cases worldwide.
It begins as a Streptococcus A (Strep A) infection of the throat (pharyngitis) or skin (impetigo), usually in children aged 5 – 14 years. If untreated or it recurs, it can lead to an autoimmune response called acute rheumatic fever (ARF). If it causes damage to the heart and valves, it causes RHD and can lead to complications such as endocarditis, heart failure and stroke.
In Australia, the latest statistics from December 2023 show there were 11 136 people on the RHD registers living with ARF and/or RHD in New South Wales, Queensland, Western Australia, South Australia, and the Northern Territory.
Most of these diagnoses were Aboriginal and Torres Strait Islander people.
There are three tiers of primary health care strategies to prevent RHD.
- Primordial prevention: Address social determinants of health such as not enough hygiene facilities and poor housing conditions to limit the transmission of Strep A.
- Primary prevention: Regular screening and treatment of Strep A infections.
- Secondary prevention: Prophylactic penicillin injections to reduce the recurrence of ARF and further progression to RHD.
The Lowitja Journal findings
The review analysed eleven peer-reviewed articles that examined clinic, community and school-based programs.
They looked at:
1. How effective are the available programs in preventing acute rheumatic fever and rheumatic heart disease in Aboriginal and Torres Strait Islander communities in Australia?
2.How culturally responsive are the available prevention programs?
The authors found that the programs that took a strict biomedical approach failed to address the rates of ARF and RHD.
“(You need to) go in with the acknowledgement of accepting the local people’s knowledge,” Ms Holland said.
“The fly in, fly out managers who think they’re not visitors to community. Who come in dominant, instilling ‘outsider’ control of health clinics. They come in not realising that if someone dies in community, that local people are going to be collectively quite impacted,” she said.
The authors found that when there was greater community ownership and collaborative interdisciplinary partnerships with Indigenous communities, it resulted in more successful RHD elimination efforts.
More local involvement backs up a blueprint that was published in the MJA. The National Aboriginal Community Controlled Health Organisation (NACCHO) highlighted that Indigenous ownership is one of the key elements of eliminating RHD.
As part of this priority, funding has been provided to expand local capacity for ARF and RHD activities and there are now 29 Aboriginal Community Controlled Health Organisations (ACCHOs) participating in this program, up from 15 ACCHOs a year ago.
“This new approach, of interest to many who seek to work more effectively in advancing the health and wellbeing of Aboriginal and Torres Strait Islander peoples, shifts power and decision making to community control. This is sovereignty in action,” Ms Pat Turner, NACCHO’s CEO, and Dr Dawn Casey, NACCHO’s Deputy CEO wrote in an MJA perspective in 2024.
More compassion and better care
Ms Holland also questioned why more can’t be done to prevent RHD rather than monthly penicillin vaccinations.
The review highlighted: “Acute rheumatic fever and RHD are potent markers of social disadvantage and health disparity driven by inequitable access to wealth and health care compounded by the continued negative impacts of colonisation, systemic failures and injustice experienced by Indigenous peoples.”
During the global COVID-19 pandemic, there was intense global action to find a vaccine to stem morbidity and premature mortality.
As the authors wrote in the review: “RHD is pronounced as a disease of poverty and social and health inequity but has not received the same urgent investment.”
“Can you imagine white urban Australian children lining up for monthly penicillin injections? I don’t think so. It’s archaic. Why aren’t we putting the same intensity (as COVID-19) into the vaccination process and funding that?” Ms Holland questioned.
Ultimately, there needs to be a more compassionate approach from all.
“I think it comes back to how do you infuse compassion? Because I think if it was there, a lot of these issues wouldn’t be existing,” she said.
“To me, it’s all about health equity. Really the bottom line its working together collectively to gain awareness and see the issue. I do believe Australia is a compassionate society, but maybe not aware. I think if they were more aware, you would get more people being outraged and working better together to find solutions,” she concluded.
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