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Community-led research set to revolutionise treatment of rheumatic heart disease

Young Aboriginal and Torres Strait Islander people receiving long-term, painful injections to prevent deadly complications from rheumatic heart disease (RHD) will design their own optimum treatment program thanks to latest research at The Kids Research Institute Australia.

Young Aboriginal and Torres Strait Islander people receiving long-term, painful injections to prevent deadly complications from rheumatic heart disease (RHD) will design their own optimum treatment program thanks to the latest research at The Kids Research Institute Australia.  

sitting with logo close up.jpgFunded as part of the Medical Research Future Fund (MRFF) Preventive and Public Health Research Initiative announced today, close to $1 million has been dedicated to community-led research aiming to improve the current, outdated treatment model for RHD.

Generally considered to be a disease of developing nations, RHD is caused by Group A Streptococcus (Strep A) infections of the skin or throat and still persists in Australia’s Aboriginal remote and regional communities at some of the highest rates in the world.

Without treatment with antibiotics, the damage to the body caused by RHD can be fatal – children require major heart surgeries and risk strokes and heart failure. 

The research project, co-led by Laurens Manning, Head of Strep A and ARF Therapeutics at the Wesfarmers Centre of Vaccines and Infectious Diseases based at The Kids Research Institute Australia and Associate Professor at The University of Western Australia's Medical School, and Glenn Pearson, Director of First Nations Strategy and Leadership at The Kids and Associate Professor at The University of Western Australia, aims to ensure young people living with RHD receive maximum protection against these deadly complications.

After an RHD diagnosis, patients must endure a penicillin injection every 28 days for a minimum of ten years to maintain a steady level of antibiotics in the blood stream and prevent further infections – this treatment regimen has remained unchanged for the past 70 years 

“However, this outdated model is proving ineffective, with latest figures showing that most patients do not complete their prescribed treatment, and many experiencing difficulties with the inflexibility of the timing, discomfort from the particularly painful intramuscular injections and access to healthcare facilities.

“Over the past five years, we have conducted numerous studies aiming to bring choice and flexibility into RHD treatment, including increasing the penicillin dosage to last several months in the body instead of only 28 days, and changing the injection delivery to under the skin instead into muscle – all of which have shown very promising results.   

“Most recently, we have explored the option of self-administering a lower dose of penicillin once a week, eliminating the need to access healthcare facilities and giving patients ownership over their own treatment.

“We now have a potential ‘menu of options’ to improve the uptake of treatment, and this latest funding will allow Aboriginal communities to guide us on what will work best for people receiving the injections, and what implementation should look like." 2019.04.18 PORTRAITS-1 - Copy.jpg

The Kids Research Institute Australia researchers will be partnering with the WA State Health Department and Aboriginal Health Organisations to ensure the project is community-led and puts people living with RHD front and centre.

“Through two-way learning conversations, we will gain valuable feedback on past experiences and the barriers to the existing treatment, as well as preferred treatment options going forward that are most likely to be accepted and welcomed by people living with RHD,” A/Prof Pearson said.

“With this knowledge, we will work alongside community members to co-design and implement an updated treatment model, using a suite of culturally appropriate patient information tools and health worker training materials.

Our goal is to create a gold standard model of care to treat and prevent RHD, which will ultimately be rolled out across Australia and have a major impact on thousands of people faced with the prospect of a life cut short by this devastating disease.

Click here for more information about Strep A and RHD research by the END RHD Program at the Wesfarmers Centre of Vaccines and Infectious Diseases.