Rheumatic heart disease rates rise in Indigenous communities

The crisis in Australian Indigenous communities impacted by rheumatic heart disease (RHD) continues, with the latest data showing diagnoses among Aboriginal and Torres Strait Islander peoples increased by more than 20% in the five years to 2021.

RHD, which develops after rheumatic fever, is preventable. But if it’s not diagnosed or treated, it can cause heart failure, disability, and premature death.

Sara Noonan, RHD Technical Advisor at Menzies School of Health Research, in Darwin, says: “Australia has some of the highest recorded rates of acute rheumatic fever and rheumatic heart disease anywhere in the world among its Indigenous populations, but new cases of rheumatic heart disease among the non-Indigenous population are negligible. A screening study found that one in 20 children in a remote community are living with rheumatic heart disease.”

The latest national data published in May 2023 by the Australian Institute of Health and Welfare (AIHW) shows there were 5238 new diagnoses of RHD between 2017 and 2021, an increase of more than 20% over the previous five-year period.

The extent to which the rise is due to better detection or more actual cases can’t be answered from these data. Since efforts to improve detection are underway, this might account for some of the increase. Detection is important to be able to link people to care in a timely way.

Rheumatic fever is an autoimmune response to a beta haemolytic streptococcal A – better known as Strep A – infection. Strep A infections of the throat and skin contribute to ARF. Indigenous people in many communities have a very high rate of skin infections.

The impact of RHD can be devastating.

“Rheumatic fever is most common among children aged five to 14, and the median age of diagnosis of RHD in Indigenous people is 21 years, so clearly this is a disease of young people,” Noonan says.

“According to the latest AIHW report about 14% of people have severe RHD at the time of diagnosis, and this sets them up with a crippling disease dominated by complex medical care, often coordinated from a remote location, and frequently the need for open heart surgery.”

A common presentation of ARF includes fever and joint pain (involving one or multiple joints). Health carers say that the pain associated with rheumatic joint pain is “worse than it looks”, and children affected often need assistance to walk or need to be carried.

Symptoms of more severe RHD include shortness of breath, cough, rapid heart rate and breathing rate, tiredness, and fluid build-up in the legs and feet.

Noonan describes the heartbreaking impact on women of child-bearing age. “If the heart valves are so damaged that they need to be replaced with artificial valves, lifelong blood thinning medication (mostly warfarin) is required. For some women, this can mean forgoing families, since warfarin crosses the placenta barrier and is known to cause birth defects.

“Pregnant and birthing women with RHD need very careful monitoring, and for Aboriginal and Torres Strait Islander women, this may require giving birth in a metropolitan hospital rather than on traditional lands.

“People who have had heart valve surgery may need to reconsider whether they can play contact sports because of the risk of bleeding from blood thinners; they are usually on daily medication, and need regular health checks and tests for the rest of their life. Having rheumatic heart disease is a life-long commitment.”

And yet RHD is rarely seen in the non-Indigenous community.

“The decline in ARF and RHD in the broader population during the 1940s and 1950s was associated with improved living conditions and improved health care, but many Aboriginal and Torres Strait Islander communities are not experiencing such improvements, so it is not surprising that rates are not declining,” Noonan says.

“The risk factors for RHD manifest in childhood, yet RHD does not receive the attention or resourcing that many other childhood diseases do. In whole numbers RHD ranks low compared with other forms of heart disease, however, it is overwhelmingly Indigenous, remote-living people who carry the burden of disease, and this is a key indicator of inequality.”

Vicki Wade, a Noongar woman from Southwest WA who leads the Australian Heart Foundation First Nations Heart Health Program team, is “disheartened” by the data. She says Australia has committed to eliminating RHD by 2031.

“The rates haven’t improved,” Wade says. “And I don’t think, unless something happens dramatically, unless there’s money to improve housing, to improve the environment, I don’t think we will reach that target by 2031.”

Experts like Noonan and Wade say a multi sector approach is needed to address root causes of RHD to prevent future diagnoses while caring for people already living with the disease.

Noonan says a major issue is inadequate funding: “RHD is not going away any time soon, so a long-term, comprehensive commitment is needed.”

Noonan points out important improvements in RHD control over recent years. Case detection, especially of rheumatic fever, seems to be getting better; more people are reported to registers; antibiotic delivery to prevent rheumatic fever recurrences has improved in recent decades (although that was dented significantly by COVID); and young people with rheumatic heart disease have better life expectancy now than in the past.

“But there’s so much more to do,” she says.

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“For example, a national approach to RHD control could overcome the problems of five separate jurisdictional programs maintaining five separate disease registers which are structured and function separately and do not link together. Many people with RHD move across jurisdictional borders, and this makes coordination of care very difficult.”

Remote health care staff are mostly at the forefront of RHD control, but many are not well-equipped to deal with a disease rarely seen in the cities, where they do their training.

Noonan says capacity needs to be developed among health staff to improve timely diagnosis and treatment of skin conditions like scabies and impetigo, to help prevent rheumatic fever.

“In some communities, skin conditions are so prevalent that they are seen as normal,” she says. “Also, health services often don’t generally focus on this early (primary prevention) stage, and clinical effort often starts at the ‘diagnose ARF’ stage.

“The health workforce needs to know who is at high risk of ARF and RHD and treat all sore throats (pharyngitis) and infected skin sores in this group with antibiotics.”

Noonan adds that the Aboriginal and Torres Strait Islander health workforce needs to be “empowered and supported to lead” in this area.

“Aboriginal health staff are leaders in providing clinical care as well as patient and community advocacy. They are well-placed to provide culturally safe clinical care and bridge the gap between the Western medical model of care and cultural expectations around health. But culturally safe care is everybody’s business – we can’t just outsource that to the few First Nations staff who might be available.”