Acute Rheumatic Fever and Rheumatic Heart Disease
Community-led solutions for ARF and RHD prevention and management helping to improve health outcomes for Aboriginal and Torres Strait Islander people.
What we do
Acute rheumatic fever (ARF) and rheumatic heart disease (RHD) are entirely preventable. They persist in high-income countries only where the social and cultural determinants of health are not equitably addressed.
In Australia, Aboriginal and Torres Strait Islander people are disproportionately affected. As of December 2022, the Australian Institute of Health and Welfare report Aboriginal and Torres Strait Islander people accounted for 82% of ARF and RHD diagnoses on jurisdictional registers. This highlights the urgent need for targeted prevention and management strategies, which we focus on.
At the core of NACCHO’s strategy to address acute rheumatic fever (ARF) and rheumatic heart disease (RHD) within Aboriginal and Torres Strait Islander communities lies a commitment to comprehensive culturally safe primary care and structural reform. This commitment is critical for effectively reducing the incidence of ARF and prevalence of RHD at a population level, intertwining community-led comprehensive primary care into institutional and regulatory frameworks. These reforms include addressing housing conditions and environmental health and targeting the root causes contributing to the prevalence of these conditions.
Working with the Aboriginal community-controlled health sector and other stakeholders, we address the root causes of ARF and RHD by ensuring access to culturally informed, community-led care. Our efforts involve healthcare providers, communities, and policymakers to build a fairer healthcare system for all.
Our initiatives
The ARF and RHD program is grounded in the principles of community control and cultural leadership, guided by the Core Services and Outcomes Framework. Using needs assessments and evaluations, we ensure funding aligns with disease burden and community needs. This supports ACCHOs in delivering effective health services.
Sector-led governance
NACCHO co-chairs the Rheumatic Fever Strategy (RFS) Joint Advisory Committee (JAC) with the Australian Government Department of Health and Aged Care. We also chair the RHD Expert Working Group (EWG) to ensure activities are evidence-based and align with the ACCHO sector’s perspective.
Funding for ACCHOs
ACCHOs in high-need areas receive funding to strengthen local workforces and implement culturally appropriate, evidence-based strategies. Focus areas include:
- Prevention (environmental health, health promotion)
- Screening and early diagnosis
- Treatment and care pathways
- Ongoing patient support
Community of Practice
We facilitate a Community of Practice for ACCHOs involved in ARF and RHD initiatives, fostering knowledge-sharing, problem-solving, and support across communities.
Echo in ACCHOs pilot project
The Echo in ACCHOs pilot project aims to address the gap in access to culturally safe echocardiography in regional and remote communities. The pilot project offers training for Aboriginal and Torres Strait Islander Health Workers and Practitioners to capture an ultrasound of the heart that is suitable to screen for rheumatic heart disease. program trains Aboriginal and Torres Strait Islander Health Practitioners and Workers in selected ACCHOs to capture images via echocardiograms, transfer for interpretation and integrate these skills into their care models.
Data sovereignty and control
NACCHO collaborates with stakeholders to improve data access while ensuring community control in line with the National Agreement on Closing the Gap.
Resource and workforce development
We offer educational resources and training opportunities, developed with input from the Community of Practice and the NACCHO RHD Expert Working Group.
Stakeholder engagement, partnerships, and communication
In addition to ACCHOs, we work with partners like the Australian Department of Health and Aged Care, BHP, and The Snow Foundation to advocate for community-led approaches to ARF and RHD.
Our approach
Community-led approaches to addressing ARF and RHD
NACCHO works closely with stakeholders around the country to address the social and cultural determinants of health that impact the prevalence of ARF and RHD. Our collaboration spans healthcare systems, communities, and policy-makers, with the goal of creating an equitable health landscape where all people have access to essential prevention and management resources.
Our approach is data-driven and informed by community insights, shaped by a deep understanding of the social determinants impacting Aboriginal and Torres Strait Islander communities. To ensure those most affected are central to decision-making, NACCHO has established an Aboriginal and Torres Strait Islander-led national governance structure.
We employ a strategic, targeted approach to ensure that resources are effectively allocated, and programs are tailored to meet the specific needs of each community. The alarming reality is that Aboriginal and Torres Strait Islander children are currently 55 times more likely to die from RHD than other Australian children – an unacceptable disparity that demands urgent action.
NACCHO is committed to changing these statistics, reducing the prevalence of ARF and RHD, and most importantly, saving lives. By focusing on both primary care and structural reforms, our community-led approach to tackling ARF and RHD aims to bring lasting change and improved health outcomes for Aboriginal and Torres Strait Islander people.
Eligible ACCHOs receive funding to support ARF and RHD prevention and management activities, prioritising high-burden areas. These ACCHOs are part of the ARF and RHD Community of Practice, a national network facilitated by NACCHO. Additionally, we are developing a co-designed echocardiography training program to improve access to community-led, evidence-based, culturally safe echocardiography services that better meet the needs of Aboriginal and Torres Strait Islander people at risk of ARF and RHD.
Our program operates under a national, sector-led governance structure, supported by the Rheumatic Fever Strategy Joint Advisory Committee, the RHD Expert Working Group, and the ARF and RHD Community of Practice. Funding is provided by the Australian Government, with additional support from BHP and The Snow Foundation.
Our impact
NACCHO’s ARF and RHD program addresses the high incidence and prevalence of these preventable diseases in Aboriginal and Torres Strait Islander communities through targeted interventions and community-led initiatives. By providing funding to eligible Aboriginal Community Controlled Health Organisations (ACCHOs) and facilitating the ARF and RHD Community of Practice, we enhance prevention and management efforts in high-burden areas.
Our co-designed echocardiography training program has been developed to strengthen the capacity of primary health care workers in the ACCHO sector to deliver community-led, evidence-based, culturally safe equitable echocardiography services that better meet the needs of Aboriginal and Torres Strait Islander people at risk of ARF/RHD. These initiatives contribute to reducing health disparities, ultimately aiming to save lives and improve health outcomes for Aboriginal and Torres Strait Islander peoples.
The National Agreement on Closing the Gap 2020–2030 acknowledges the power of community-led initiatives in shaping how services are delivered to address and prevent acute rheumatic fever (ARF) and rheumatic heart disease (RHD).
What is ARF & RHD?
ARF and RHD are preventable diseases that occur when social and cultural health determinants are not equitably addressed.
What is ARF?
Acute Rheumatic Fever is an inflammatory condition affecting the heart, joints, brain, and skin. It often follows untreated Strep throat, scarlet fever, or skin infections caused by Group A Streptococcus bacteria. While ARF isn’t contagious, the underlying infections are.
Common Symptoms of ARF:
- Fever
- Painful and swollen joints
- Rash
- Chest pain
- Shortness of breath
- Tiredness
- Jerky body movements
What is RHD?
Rheumatic Heart Disease develops from repeated, untreated episodes of ARF, causing permanent damage to heart valves. There is no cure for RHD, but early treatment can prevent ARF from progressing to RHD. Effective management includes regular monitoring and, in some cases, surgery.
Committees
Rheumatic Fever Strategy Joint Advisory Committee (JAC)
The JAC coordinates a national approach to ARF and RHD, focusing on improving care pathways and data management.
NACCHO RHD Expert Working Group (EWG)
The EWG provides evidence-based medical and health advice to support the program.
Resources
NACCHO’s RHD program resource library offers publications, training modules, and tools to support communities and health professionals in preventing and managing ARF and RHD.
Additional resources will be developed in collaboration with the ACCHO sector and added over time.
If you have any questions, resource ideas, or would like to share resources, contact the RHD team at rhd@naccho.org.au.
Resources for Community
Resources for Health Professionals
ACCHO locations
NACCHO oversees a network of 146 members, each running Aboriginal Community Controlled Health Organisations (ACCHOs) across urban, regional, and remote Australia. These ACCHOs range from large facilities with multiple healthcare professionals providing comprehensive services to smaller centres focused on preventive care and health education, primarily delivered by Aboriginal Health Workers and nurses.
NACCHO’s Aged Care programs are delivered in selected locations across its network, ensuring culturally appropriate care reaches Elders and older Aboriginal and Torres Strait Islander people in diverse urban, regional, and remote communities.
Contact
For any inquiries or assistance, please contact the RHD team here: rhd@naccho.org.au.
