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A WIDE-RANGING push, co-designed with Aboriginal and Torres Strait Islander health leaders, to eliminate rheumatic heart disease (RHD) in Australia could save more than 650 lives over the next decade, say experts who are calling on the federal government to commit to long term funding for the plan.
This week’s MJA includes a supplement outlining The RHD Endgame Strategy: the blueprint to eliminate rheumatic heart disease in Australia by 2031 (the Endgame Strategy), a plan to eliminate a disease for which Australia holds an unenviable record: Aboriginal and Torres Strait Islander people live with one of the highest per capita burdens of RHD in the world.
Lead author of the Endgame Strategy supplement Dr Rosemary Wyber, Head of Strategy at END RHD at the Telethon Kids Institute, said now was the time to tackle RHD in Australia.
“We have never had the conditions aligned the way they are now,” she said. “We have a freshly minted, evidence-based, co-designed strategy ready to go. We have a network of stakeholders – END RHD throughout the country, the National Aboriginal Community Controlled Health Organisation (NACCHO) and their affiliates in high burden jurisdictions, partnerships with the Heart Foundation, the [Australian Medical Association] and with leading research institutes.
“We have all the pieces of the puzzle, what needs to happen now is to put them together to begin the implementation phase of this work.”
The authors cited 2019 modelling that suggested that implementing a strategy to eliminate RHD by 2031 would prevent 663 deaths and save the health care system $188 million.
Acute rheumatic fever (ARF) is an autoimmune disease that can be triggered by group A streptococcal infection. Repeated or severe ARF can lead to RHD, which has a high rate of morbidity and mortality. The authors noted that group A streptococcal infection was associated with socio-economic factors such as household crowding.
The Endgame Strategy has been published alongside a new guideline that provides “up-to-date guidance on primordial, primary and secondary prevention, diagnosis and management, pre-conception and perinatal management of women with RHD, culturally safe practice, provision of a trained and supported Aboriginal and Torres Strait Islander workforce, disease burden, RHD screening, control programs and new technologies”.
Both the Endgame Strategy and the new guidelines have been developed with culturally and socially centred care at their core.
Ms Vicki Wade, Senior Cultural Advisor with RHDAustralia and co-author of the guidelines, said it was crucial that culture is a key consideration in the guidelines. Culture, for many years, has been absent from guidelines and seen “as a barrier to care, but should be viewed as a powerful enabler to be able to increase uptake of guidelines and ultimately improve health outcomes”, she said.
Ms Wade said co-design and co-development was important, and Aboriginal and Torres Strait Islander people had been involved at every stage in the development of the new guidelines and the Endgame Strategy and this would be critical to achieving the 2031 target.
“To my knowledge, this is the first time that culturally centred care – looking at the person and culture sitting at the centre of evidence-based guidelines – has been integrated throughout the whole development process,” Ms Wade said.
In developing the guidelines, Ms Wade said patient mapping was used to identify the “touch points” where health system reform was needed to ensure optimal care.
“We have used real case studies to map patients’ journeys from being diagnosed with acute rheumatic fever to having to fly out to have a valve repair,” Ms Wade said. “We looked at these patient journeys to find the touch points – the places where patients are less likely to receive the optimal care – that need to be addressed.”
Ms Wade said it was important that people with lived experience of RHD were included in the development of the guidelines.
“In addition to the expert working group, and patient mapping, we had the Champions for Change, a program I run through RHDAustralia. These are people with a lived experience, either they have ARF or RHD, or they are Aboriginal Health Practitioners or carers who directly look after people with the disease.”
Ms Wade said patients may need to have secondary prophylaxis injections for many years, so breaking down the cultural and social barriers to long term engagement with the health system is critical to optimal care.
She said issues that may be labelled “non-adherence” might in fact represent cultural barriers to care.
“[The guidelines and the strategy] encourage the clinicians to look beyond the diagnosis into the holistic care of the patient and it really sits quite nicely with Aboriginal people’s definition of health, beyond the physical, to the emotional, the mental connection to land, connection to country and connection to culture.”
Lead author of the new guidelines, Professor Anna Ralph, Director of Global and Tropical Health at the Menzies School of Health Research, said the latest document included many changes from the 2012 edition, reflecting an evolution in the knowledge for preventing and managing RHD.
Professor Ralph highlighted several key changes, including a reduction in the duration of secondary prophylaxis for some people; clear definitions of populations most at risk of ARF and RHD; detailing the role for non-vitamin K antagonist oral anticoagulants in RHD management; and recommendations to use local anaesthetic to reduce potential “anxiety and pain” associated with regular penicillin injections.
“Secondary prophylaxis requires an intramuscular penicillin injection once every 28 days. It’s a thick medication, and takes a minute or so to inject, so it’s really not fun for little kids to have that every single month,” she said. “The previous guideline failed to acknowledge that the injections can actually be painful.”
Professor Ralph said embedding cultural safety in the guideline was fundamental to the uptake of this evidence-based care.
“People need to feel like the clinic is a welcoming place and that they want to go there,” said Professor Ralph, noting that some ARF symptoms can seem trivial. “It’s a sore throat or a skin sore that represent strep infection and trigger the rheumatic fever, so Aboriginal families need to be strongly encouraged to go to the clinic with those conditions, and they have to feel that they are welcomed in a culturally safe space.”
The Endgame Strategy was launched in late September by federal Health Minister Greg Hunt.
Speaking at the launch, Ms Pat Turner, CEO of NACCHO, said: “We have prioritised RHD, not because this disease is a simple fix, but because it is hard. Because it spans from housing to clinics to open heart surgery. It exemplifies the gaps in prevention in the health system and in outcomes.
“We are focusing on this because the only possible solution is a comprehensive, Indigenous-led primary care-based strategy of both prevention and treatment. In pursuing this goal, we have an opportunity to work together, collaboratively, in new ways. We believe in that way of working and – with your help – we believe that it can end RHD.”
Dr Wyber said previous approaches had sought to tackle RHD through a traditional biomedical lens focusing on the causal pathway of the disease.
“Over the past few years, what has become increasingly clear is that that’s really just business as usual,” she said. “What we need to change outcomes from RHD is a much more comprehensive way of working.”
Dr Wyber said the funding model to eliminate RHD was complicated due to the involvement of social determinants of health, such as housing.
“We know that addressing crowded housing in remote Aboriginal and Torres Strait Islander communities is critical, but we also know that doing that will have a significant impact on a whole range of disease endpoints,” she said, noting that funding to improve housing could be tallied against other health goals.
“We are asking for a commitment from the Commonwealth to continue the current level of funding but also to increase resourcing with new money to support this more comprehensive approach outlined in the RHD Endgame Strategy. We know that this is critical to ending the disease by 2031 which the Commonwealth has committed to in their national long term health plan.”
RHD is the most common worldwide cause of heart-related death in children and adults aged under 40 years. However, through simple and cost-effective strategies, RHD and associated deaths can be prevented Consequently, I was delighted to read about the RHD Endgame Strategy. Whilst one must respect the fact that Professor Anna Ralph from the Menzies School of Health Research based at the Royal Darwin Horizontal (not to be confused with the Menzies Institute for Medical Research at the University of Tasmania) was the leader of the new guidelines, we need be cognizant that the production of the RHS Endgame Strategy was a collaborative production by the End Rheumatic Heart Disease Centre of Research Excellence based at Perth’s Telethon Kids Institute with the support of some 25 leading health and research organisations including the National Aboriginal Community Controlled Health Organisation and their affiliates, partnerships with the Heart Foundation, the Australian Medical Association and with other leading research institutes.
What also is exciting is that as reported in InSight (above) the RHS Endgame Strategy document includes many changes from the 2012 edition thus reflecting an evolution in the knowledge for preventing and managing RHD, as reported. The 2012 edition .was in fact titled the Australian Guideline for Prevention, Diagnosis and Management of Acute Rheumatic Fever and Rheumatic Heart Disease (2nd edition), a conjoint publication of many organisations, including the Menzies School of Health. In the 2012 edition, it was reported that: 1) RHD is much more prevalent among Aboriginal people in the Northern Territory than other Australians (0.2%), and the prevalence rate among Aboriginal people is 25 times as high as for other Australians; 2) Aboriginal and Torres Strait Islanders are up to eight times more likely than non-Aboriginal and Torres Strait Islanders to be hospitalised for ARF and RHD; 3) between 2005 and 2007, the age-adjusted death rate was four times as high in Aboriginal people as the non-Indigenous rate; and, 4) the then-recent unpublished data from the Northern Territory were encouraging, with adherence rates improving and recurrence rates decreasing [p. 12] . The situation is somewhat different nowadays,
/ARF and RHD have for a long time been the subject of investigation in Australia. For instance, an evidence-based review for the diagnosis and management of ARF and RHD was published by the Heart Foundation and the Cardiac Society of Australia and New Zealand in 2006. Later in 2009, the Australian Government started the Rheumatic Fever Strategy as part of its New directions: an equal start in life for Indigenous children policy. The strategy provided funding for register-based RHD control programmes in the Northern Territory, Queensland and Western Australia, as well as establishing a national coordination unit known as RHDAustralia (based at the Menzies School of Health Research and funded by the Australian Government Department of Health). Its major tasks were to establish a national data collection and reporting system. update and disseminate evidence-based, best practice guidelines, develop education, training and health professional resources, and provide support to jurisdictional RHD control.
Despite all of these reports and the recommendations, ARF and RHD still remain endemic among the Australian Indigenous population and particularly among Aboriginals in remote parts of the Northern Territory. For Australia’s Indigenous population, addressing social determinants especially crowded housing, has tracked closely with morbidity and mortality due to RHD. To what extent other factors such as the ease of access to primary health care, hopefully provided in a culturally safe environment, the degree of the uptake of services and clinical follow-up remains questionable.
As part of the final report of the Indigenous Evaluation Strategy produced and published by the Productivity Commission in October 2020, it is to be hoped that the RHS Endgame Strategy will include an assessment phase that will point to improvements, or otherwise, in the measurement of the burden of RHD disease that will further assist in planning for its control and will help identify those locations where Indigenous persons reside and where further, if not better, investments are needed. Indeed, any assessment or evaluation phase should include a comparison between Indigenous and non-Indigenous Australians, for social inequalities also exists across the whole nation and what may work for non-Indigenous Australians may not work for First Nations peoples. Further, learning from those countries that have been most successful at controlling RHD among their own Indigenous populations and trying to understand the determinants of differences among countries is fundamental to continuing to improve positive outcomes for Indigenous peoples worldwide burdened with ARF and RHD.
The township of Maningrida, West Arnhem Land, as reported in Issue 29 of 27 July 2020 (see ’Our children don’t have a future’: the burden of RHD) is a ‘hotspot’ for both AFR and RHD. Consequently, it is to be hoped that part of the new RHD Endgame Strategy will begin to tackle such ‘hotspots’.
The time has come for academic one-upmanship to stop and to get on with the job of tackling ARF and RHD. The sooner, the better. In this regard Aunty Pat Turner’s devotion to rid her people of the devastating consequences of RHD is to be applauded as is the wonderful work of the primary care initiatives that are being undertaken by Aboriginal Controlled Community Health Organisations.
In response to Dr. Wyber’s comment that previous approaches had sought to tackle RHD through a traditional biomedical lens focusing on the causal pathway of the disease. I would suggest that ndigenous Australians might best profit from a modern health profile if they adopt modern healthcare together with aspects of traditional Indigenous health culture. This may present with a ‘collision’ if treatment is provided by non-Indigenous health workers. Nevertheless, from my studies of international public health initiatives, I have discovered that all cultures have a system of health beliefs to explain illness causation, how it can be cured or treated, and who should be involved in the process. For instance, the degree to which patients perceive patient education as having cultural relevance for them can strongly affect their reception to information provided and their willingness to use it. Further, understanding the construct of ‘agency’ among Indigenous Australians will inform ‘best practice’ initiatives in health promotion and treatment modalities to reduce the illness burden and encourage positive attitudes to healthy living. In this context, the importance of appropriate engagement between non-Indigenous health workers and the Indigenous community they serve is paramount and should not be overlooked.
Whilst I respect the analysis that provides the number quoted here “save the health care system $188 million”, I disagree that this is a cost savings. At best, the combined health systems would avoid spending $188 million on RHD, but that would quickly be used in other areas of clinical pressure – e.g. mental health.
There are only savings to the health system when beds are closed – and we don’t close beds.
But to have the key enablers aligned in the ways described provides an ideal opportunity to implement solutions now.