” At END RHD, our vision is simple: that no child born in Australia today dies of rheumatic heart disease.
And in theory, it should be just that, simple, because RHD has already been eliminated in Australia’s non-Indigenous population. 94% of people who get RHD are our mob.
Despite widespread improvements to the living standards of most Australians, our First Nation’s people continue to experience disadvantage and conditions that perpetuate the spread of infectious diseases.
In my mind, there is no clearer example of a disease of disparity than rheumatic heart disease.
At NACCHO, we became a founding partner of END RHD not because this disease is a simple fix, but because it is hard.
Because it spans from housing, to clinics, to open heart surgery, and highlights the inequalities within the health system, and in outcomes. “
Pat Turner CEO NACCHO delivering this year’s Aileen Joy Plant Oration with END RHD Co-Chair, Professor Jonathan Carapetis. See Pats speech Part 2 below
Part 1 PHAA Press Release
Download the full Press Release
The conference was run by the Public Health Association of Australia (PHAA) and delegates got a sneak preview on an end game strategy to rid Australia of RHD – a detailed report that is due for formal release early next year.
“It’s a strategy that relies on partnerships and empowering Indigenous people,” said Professor Jonathan Carapetis, Executive Director, Telethon Kids Institute
“The time has never been better for us to control this disease.”
Researchers are looking at new formulations so that sufferers don’t have to have monthly penicillin
injections for years. “An implant is being worked on,” Professor Carapetis said.
“For 25 years we’ve all been looking at silver bullets and not seeing improvements but we should have hope as we now pull together all we know especially the environmental determinants.”
“We should be able to reduce RHD prevalence by 70 percent,” Professor Carapetis said.
“It’s complex but not overwhelming. It involves multiple sectors and a comprehensive response.”
“The Australian Government is funding the development of a Strep A vaccine. There is progress in the field as we move towards a trial. But that won’t result in a vaccine for our kids for a decade.”
Part 2 Pat Turners Speech
As an Aboriginal woman of Gurdanji-Arrernte heritage, I wish to acknowledge the Ngunnawal people as the traditional owners of the land where we meet today.
I also acknowledge our continuing and vibrant First Nation’s cultures. I am grateful for the contributions of our past, present, and emerging leaders.
Today, I stand here wearing two hats. As CEO of the National Aboriginal Community Controlled Health Organisation – NACCHO – and as Co-Chair of END RHD, an alliance of peaks, community and research organisations committed to ending rheumatic heart disease in Australia.
It gives me great honour to be here today to deliver this year’s Aileen Joy Plant Oration with my END RHD Co-Chair, Professor Jonathan Carapetis.
RHD begins with a sore throat or a skin sore caused by Strep A.
For our children, these are common infections – but the impact can last a lifetime.
A lifetime which, too often, is cut short.
There is no cure for RHD, but patients must undergo a painful injection of antibiotics every 28 days for at least a decade to keep their heart as strong as possible. Some must also undergo surgery to have their heart valves replaced or repaired.
In our work to close the gap, there are many priorities. Our people are telling us that. There is just so much to be done, we can’t afford to have ‘favourite’ diseases.
But RHD sticks out. It is the greatest cause of cardiovascular inequality for Aboriginal and Torres Strait Islander people in this country. Non-Indigenous people, literally, just don’t get it.
In the Kimberley, the average age of death of people living with RHD is just 41 years old. This is a chronic, life-limiting disease… and it starts from a skin sore or sore throat.
We get it because of crowded houses. Because a lot of our people don’t always have access to hot water. To showers that work. To washing machines that aren’t broken.
We get it because our clinics are overwhelmed with demand, and sometimes skin sores and sore throats go untreated.
We get it because acute rheumatic fever gets missed and sometimes it is too late for treatment.
At NACCHO, we became a founding partner of END RHD not because this disease is a simple fix, but because it is hard. ( Partners in this image )
Because it spans from housing, to clinics, to open heart surgery, and highlights the inequalities within the health system, and in outcomes.
Because tackling this disease offers a way to significantly close the gap.
We are fighting to prevent the next generation of our children experiencing this needless suffering. And we are fighting for our people already living with the disease.
Kids like Tenaya, who you can see in this photo
You wouldn’t know it from that gorgeous smile, but when I met Tenaya at the start of the year, she had recently been flown down to Perth in a critical condition suffering from heart failure. Her mother had taken her to the local hospital three times, and each time she had been sent home.
The fourth time, her mother refused to leave until she was flown to Perth, where upon arrival, she was rushed to the intensive care unit and put on life-support for two weeks.
A month later, when she was strong enough, she underwent two rounds of open-heart surgery.
Tenaya is seven years old. And she’ll need monthly injections until she is twenty-one. Most likely, she’ll need further surgery too.
She bears both the physical scars of her surgery, and the emotional scars of months spent away from friends, family and her community.
Her mum says that every time she sees a nurse she bursts into tears, terrified.
And on top of all of that, her family have been forced to make the tough decision to move off country to be closer to the specialist medical treatment needed to keep her alive.
The fact that this suffering was caused by a preventable disease is horrifying.
The fact that RHD persists in a country as wealthy as Australia is a national shame.
The fact that without urgent investment, it’s predicted another 10,000 Aboriginal and Torres Strait Islander children will develop the disease by 2031, is unconscionable.
We cannot let it happen.
Our people know what needs to happen to end RHD in this country.
In fact, community-driven work is already underway across Australia.
Our communities are rising. They are demanding support.
In March this year, a historic Partnership Agreement on Closing the Gap was signed between COAG and the Coalition of Peaks, and a joint council was formed of which I am Co-Chair.
This means that now, for the first time, Aboriginal and Torres Strait Islander people, through their peak body representatives, will share decision making with governments on Closing the Gap.
The Partnership Agreement embodies the belief of all signatories that:
- When Aboriginal and Torres Strait Islander peoples are included and have a real say in the design and delivery of services that impact on them, the outcomes are far better;
- Aboriginal and Torres Strait Islander peoples need to be at the centre of Closing the Gap policy: the gap won’t close without our full involvement; and
- COAG cannot expect us to take responsibility and work constructively with them to improve outcomes if we are excluded from the decision making.
Rheumatic heart disease exemplifies the gap in health outcomes between Aboriginal and Torres Strait Islander peoples and non-Indigenous Australians.
And we know that by addressing the causes, we can also eliminate other linked conditions that unfairly blight our people such as scabies, otitis media, and kidney disease.
We cannot, and will not, close the gap without ending rheumatic heart disease.
Right now, we have the Aboriginal and Torres Strait Islander leadership and community demand to tackle this disease.
We have a commitment from government to equal partnership in our work to close the gap.
And with over 25 years of research behind us, we have a strong evidence-base to support this community-driven work.