ABOUT US
Who are we and how did the Deadly Heart Trek come about?

Communities take the lead, by inviting the Trek teams to visit. The teams on the ground are led by First Nations cultural guides, doctors, health workers and nurses, working closely with the community leaders. Many team members are known to the communities as they have worked for decades on RHD. The Trek is governed by a Board consisting of leading paediatric cardiologists, an Aboriginal health and cultural engagement lead, a social justice Aboriginal lawyer, and an independent philanthropist committed to progressing the prevention of RHD.

After decades of working with Aboriginal and Torres Strait Islanders communities and seeing first-hand the impacts of rheumatic heart disease (RHD) and acute rheumatic fever (ARF) on children, leading paediatric cardiologist Dr Bo Remenyi wanted to do more. Bo contacted her colleague Dr Gavin Wheaton, also a paediatric cardiologist, and over dinner they came up with the idea of a Trek across Australia, where a team of doctors and health workers could be invited into communities to scan, diagnose, and treat for ARF and RHD, while also educating, training and building a better understanding of the community-led action Aboriginal and Torres Strait Islanders people could take. This, in addition to raising awareness of RHD across the nation, especially regarding the impact on Aboriginal and Torres Strait Islander children, became a driving passion for the two doctors. 

After bringing on board others whom Bo and Gavin had worked with over the years including the CEO of the Snow Foundation, Georgina Byron, an advocate for improving Aboriginal and Torres Strait Islander health, paediatric cardiologist Rob Justo, as well as Senior Aboriginal leader, Noongar woman Vicki Wade who has many years of experience in Aboriginal health, RHD, cultural protocols and community liaison, the scene was set in early 2021.  

What is Rheumatic Heart Disease (RHD)?

RHD is a preventable disease but if it’s not diagnosed or treated, it can cause heart failure, disability and even death. It starts with a sore throat or skin sore caused by Strep A bacteria and can permanently damage the heart valves. 

The burden of RHD continues to grow in Aboriginal and Torres Strait Islander peoples in Australia and it’s destroying lives through ongoing injections, surgeries, death and the impacts of these deaths in communities.

How can it be eliminated?

There is a blueprint outlining exactly what needs to happen to both prevent people from developing RHD and to improve the quality of life of those living with it, called the RHD Endgame Strategy.

The Endgame Strategy Report clearly sets out the steps needed to eliminate this disease in Australia, with a focus on five priority action areas:

Aboriginal leadership, community-based programs, healthy environments, early prevention, care and support. 

What’s needed now is funding and commitment to do the work on the ground to make ending this disease possible.

Why now?

We have an unprecedented opportunity to unite and act now to end RHD – with Aboriginal leadership, community demand, collective goodwill and the evidence base to support the work that can eradicate this disease.

ACTIVITIES

Each Community has been provided with an invitation outlining the Deadly Heart Trek and will select the activities that suit their needs. 

Activities on offer:

  • Education, activity and movie sessions for community, health workers and schools on RHD and acute rheumatic fever 
  • Skin awareness – to understand skin sores, scabies and their link to RHD 
  • Cardiology clinics for children at school – to treat the disease 
  • Heart checks for children – echocardiographic (echo) screening to detect RHD early   

After the Trek - post care and follow up:

  • All medical treatments and diagnoses will be documented and followed up and where necessary, treatment to be given
  • Post-visit, full community feedback to all key stakeholders is guaranteed. Normal clinical relationships will be continued
IMPACT

Short to medium term:

Offering Communities along the journey the opportunity for:

  •    Increased awareness and education of RHD amongst communities 
  •    Diagnosis, treatment and prevention of RHD – treatment will occur within 24-48 hours for anyone that needs it. When identified – family consultation, letter to paediatrician
  •    Early detection – echo screenings of children’s hearts where communities request it 
  •    Training local health workers on echo screening – building local capacity, empowering communities, educating, up-skilling and opening-up career pathways
  •    Direct access to medical professionals
  •    Enabling self-determination and empowerment of the community – communities decide what they need
  •    Local voices and needs will be elevated to Land Councils, the media and to Government, where appropriate

Longer term outcomes:

Ending RHD, health justice, national funding rolled out to enable local programs to flourish

OUR PURPOSE

Supported by

Violet Co logo
Humpty Dumpty

We acknowledge Aboriginal and Torres Strait Islander peoples as the first inhabitants of the nation and the traditional custodians of the lands where we live, learn and work.