The Telethon Kids Institute is working to eliminate Rheumatic Heart Disease, a deadly disease with no current cure, with the publication of a new evidence-based strategy.

RHD Endgame Strategy: the blueprint to eliminate rheumatic heart disease in Australia by 2031, is an evidence-based approach half a decade in the making. It was produced by the End Rheumatic Heart Disease Centre of Research Excellence (END RHD CRE) at the Telethon Kids Institute in Perth.

Currently, there are over 5,000 Aboriginal and Torres Strait Islander people living with RHD, or its precursor, acute rheumatic fever (ARF). RHD Endgame Strategy outlines methods with the potential to prevent 8,000 new cases and 650 deaths by the year 2031.

“With the release of this Endgame Strategy we now have the blueprint outlining exactly what needs to happen to both prevent new cases and improve the quality of life for those already living with the disease,” said senior author of the Strategy, RHD expert and Telethon Kids Institute Director, Professor Jonathon Carapetis AM.

“RHD is rare among non-Indigenous people, yet Aboriginal and Torres Strait Islander people have some of the highest rates of the disease in the world. This is a disease that is usually only seen in developing countries and its persistence in Australia is an ongoing injustice.”

The strategy outlines five key priorities:

  • Investing in a First Nations-led National Implementation Unit
  • Funding place-based community programs
  • Ensuring access to healthy housing
  • Establishing comprehensive skin and throat programs for high risk communities
  • Improving the health of those living with RHD and ARF.

Margaret O’Brien is the mother of 15-year-old Liana, who was diagnosed with ARF at the age of eight.

Presenting to the hospital with a sore foot on Christmas Eve of 2012, Liana was sent home with the suspicion it was muscle damage. A few days later, O’Brien took her daughter to the local health clinic; from there she was diagnosed with ARF.

Since her diagnosis, Liana has been having long-acting penicillin injections every four weeks, these injects will continue until she is 21 to prevent ARF episodes.

O’Brien recalled the first few injections.

“She’d put her arms around me as if to cuddle me. The first few times she had it, I thought she was strangling me the poor kid. It would have hurt so much,” she said.

Now at boarding school, Liana is on top of her injection schedule and is living a healthy, active lifestyle.

A health worker and researcher, O’Brien understands the importance of RHD and ARF awareness.

“I’ve heard stories, where parents have taken their child to doctors in hospitals over and over and over … They’d go back five or six times before they work out what is wrong, because it isn’t a common disease in non-Aboriginal people, meaning it isn’t often thought of,” she said.

O’Brien said accountability lays within all communities.

“Your local health clinic isn’t going to solve the problem. It needs to be everyone coming together … it’s a disease that we shouldn’t be living with in Australia.”

The strategy is backed by 25 leading health and research organisations, including the National Aboriginal Community Controlled Health Organisation (NACCHO).

“Our people are telling us that they want to use research evidence to help choose community-driven solutions to tackle RHD,” said Pat Turner AM, CEO of NACCHO.

“Kids are coming off Country for months at a time for surgery, people are dying before their time. We’ve got the community demand, Aboriginal and Torres Strait Islander leadership—and with the Endgame Strategy, a culturally appropriate and meaningful plan.

“What we need now is funding and commitment to actually do the work on the ground to make ending this disease possible.

“It really is unconscionable to let the next generation of our children develop this disease—to be subjected to heart surgery, a needle every month, and have their life expectancy limited by decades—when we know how to stop this.”

To learn more about the RHD Endgame Strategy, visit: https://endrhd.telethonkids.org.au/our-research/the-endgame-strategy/.

By Rachael Knowles