Parliamentary Breakfast – Ending RHD in Australia

Co-hosted by Senator Malarndirri McCarthy and The Snow Foundation

On August 9 we spent a remarkable morning with members from remote communities, Aboriginal leaders, and other #endRHD advocates at Parliament House to discuss the stark reality of First Nations people living with rheumatic heart disease, successful community initiatives in place and opportunities for improvement.

Attended by many politicians and other key decision-makers, they heard some personal insights from lived experience experts about the growing toll of this disease on families and communities, and about the efforts across many communities and organisations to #endRHD.

We appreciate the four experts who came all the way from remote communities to Canberra to share their personal stories, their brave fight and their leadership. Thank you Alec Doomadgee, Greg McAdam, Kara Rudken and Kenya McAdam.

Work is underway and creating great impact, but the burden is growing.

 

• Action is being taken by communities in partnership with others such as the Deadly Heart Trek, providing education, early diagnosis and treatment to many communities across Australia. Additionally, the laundry facility programs with Orange Sky laundry vans and Remote Laundries Project and the transformational impact of peer support through  Champions4Change, these are all mostly funded by philanthropy.
• New research offers promising new approaches for more acceptable treatment and diagnosis of Strep A infection and RHD, alongside accelerating work towards a Strep A vaccine.
• Aboriginal leadership under NACCHO, since 2021, to address RHD and set-up governance partnerships.
• Federal Government funding has increased from $6 million to $12 million per annum and philanthropic investment has increased
• The blueprint to end RHD exists – the 2020 RHD Endgame Strategy provides an evidence-based roadmap to ending RHD in Australia.

In 2018, the World Health Assembly passed an international resolution to prevent and eliminate RHD.
Australia was a co-sponsor of this resolution, amplifying national commitments to eliminate RHD.

Yet – almost 10, 000 people are currently living with ARF or RHD and two die each week.

First Nation communities are experiencing a number of significant social and economic circumstances that lead to the exposure and spread of Strep A, including: limited access to adequate healthy housing, with chronic over-crowding, limited access to safe and hygienic spaces, hot water and regular washing facilities, other systemic issues including poverty, and low-quality food, and a limited knowledge of Strep A and its causes.

There is a strong momentum to end RHD, yet more attention, investment and action is needed.

 

Aboriginal leadership, community demand, collective goodwill and an evidence base in the ‘RHD Endgame Strategy’ that shows us that we can eliminate this disease.  Investment and action needs to accelerate, to stop the suffering and devastation in communities caused by RHD.

We welcome further discussions ahead of the RHD World Congress in Abu Dhabi 2-4 November 2023.

Thank you so much to the participants; Welcome to Country: Jude Barlow – Ngunnawal Elder, Senator Malarndirri McCarthy – Yanyuwa woman, Linda Burney MP – Minister for Indigenous Australians, Vicki Wade – Noongar woman, Kara Rudken – Taribelang Bunda and Wiradjuri woman, Kenya McAdam, Jaru and Kija woman, Dr Rob Justo, Paediatric Cardiologist, Greg McAdam – Arrernte man, Alec Doomadgee – descendant of Waanyi, Garawa and Gangalidda tribes, Georgina Byron AM The Snow Foundation and Professor Jonathan Carapetis AM Director Telethon Kids Institute.

And to the Take Heart Team and Moonshine Agency for the Take Heart Deadly Heart documentary featured at the event – see below to watch a shortened version of this powerful film.