NACCHO Aboriginal Health and @END_RHD Our CEO Pat Turner and @jcarapetis deliver a heart-felt evidence-based Aileen Plant Oration @_PHAA_ #CDCConference2019 on Ending #RHD in Australia #ClosingTheGap

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

PHAA RHD 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

Read Tenaya’s full story Here

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.

 

 

NACCHO Aboriginal Health and @END_RHD #NACCHOAgm19 #ClosingTheGap #HaveYourSayCTG : Our CEO Pat Turners speech ” #RHD the greatest cause of cardiovascular inequality for Aboriginal and Torres Strait Islander people in this country. “

 ” Thank you for that introduction and warm welcome, and a special thank you to Minister Hunt for his commitment to Closing the Gap.

It is wonderful to stand here on the land of the Larrakia people in a room filled with such strength; with representation from Aboriginal and Torres Strait Islander people from around the country, all with a common goal: to improve the health and wellbeing of our mob.

Today I’m up here wearing two hats.

As CEO of NACCHO, and as Co-Chair of END RHD – an alliance of peaks, community and research organisations leading the work to end rheumatic heart disease in Australia.”

NACCHO CEO Pat Turner at NACCHO Members Conference see Part 1 Full Speech 

“Today is a game-changing step. Ending RHD is a critical, tangible target to close the gap in Indigenous life expectancy.

Our Government is building on the work of the Coalition to Advance New Vaccines Against Group A Streptococcus (CANVAS) initiative, by providing $35 million over 3 years to fund the creation of a vaccine that will bring an end, once and for all, to RHD in Australia.

The trials and development, led by Australia’s leading infectious disease experts and coordinated by the Telethon Kids Institute, will give hope to thousands of First Nations people whose lives and families have been catastrophically affected by this illness.”

The funding was announced in early 2019 by Indigenous Health Minister Ken Wyatt AM is being provided from the Medical Research Future Fund (MRFF).

Read NACCHO Aboriginal Health and RHD Articles Here

 “Aboriginal and Torres Strait Islander people know what works best for us.

We need to make sure Aboriginal and Torres Strait Islander voices are reflected and expertise is recognised in every way at every step on efforts to close the gap in life outcomes between Aboriginal and Torres Strait Islander people and other Australians.’

‘The Coalition of Peaks is leading the face to face discussions, not governments.

The Peaks are asking Aboriginal and Torres Strait Islander people to tell us what should be included in a new Closing the Gap agreement and we will take this to the negotiating table.’”

Closing the Gap / Have your say CTG online survey closes today Friday, 8 November 2019 see survey link Part 2 below

Part 1 Pat Turners Speech 

Most of you will know too well the devastation that rheumatic heart disease is causing to our people. Some of you will have lost family members and friends to RHD; some of you yourselves will be living with the disease; and as Aboriginal health workers, a lot of you will be the ones on the frontline administering the monthly injections that prevent heart failure, stroke, and death.

END RHD’s 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 now are our mob.

It’s Aboriginal and Torres Strait Islander children who are most at risk of developing RHD – our kids, kids as young as five have open heart surgery. And without critical investment, the number of our mob living with the disease will triple to 15,000 over the next 11 years. That figure represents another 10,000 of our children developing a deadly disease that is preventable. We cannot let it happen.

Today, my END RHD Co-Chair, Professor Jonathan Carapetis, is going to talk about the RHD Endgame Strategy – a plan for us to prevent these unnecessary deaths; to eliminate the disease by 2031.

After him, we’ll hear from Raychelle McKenzie and her mother Noeletta. Raychelle was diagnosed with RHD aged 8. Half her life she’s been living with RHD, getting monthly injections to keep her heart strong.

But first, I want to tell you why ending RHD is so important to me.

As Aboriginal and Torres Strait Islander health professionals, the range of issues that require our urgent attention is extensive. Doing everything means that we rarely choose to focus on a single disease. There is so much to be done, we can’t afford to have ‘favourite’ diseases.

But RHD sticks out. It’s the greatest cause of cardiovascular inequality for Aboriginal and Torres Strait Islander people in this country.

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 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. Because it spans from housing to clinics to open heart surgery and exemplifies the gaps in the health system and in outcomes.

We are focusing on this disease because the only possible solution is a comprehensive, Indigenous-led, primary care-based strategy of both prevention and treatment.

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, demanding action, demanding support to prevent the next generation experiencing this unnecessary suffering.

But what we’ve been missing, is a blueprint that ties it all together. A collaborative strategy, involving community, government and research, that outlines what needs to happen, who needs to do it, and what it’s going to cost. A plan that has been informed by Aboriginal and Torres Strait Islander peoples and communities – our perspectives and expertise – and aligns with the community-controlled work and principles of the Coalition of the Peaks.

And that’s exactly what this RHD Endgame Strategy offers. If fully funded and implemented, not only will this strategy eliminate RHD, it will significantly help close the gap in health outcomes. Because by addressing the root causes of RHD, we will also eliminate other linked conditions like scabies, ear infections, and kidney disease that unfairly blight our people.

The RHD Endgame Strategy is research with an impact; a solution to RHD that we can all be part of, and I ask you all to get behind it.

Part 2 Closing the Gap / Have your say CTG online survey closes today Friday, 8 November 2019.

 

The engagements are now in full swing across Australia and this is generating more interest than we had anticipated in our survey on Closing the Gap.

The Coalition of Peaks has had requests from a number of organisations across Australia seeking, some Coalition of Peak members and some governments for more time to promote and complete the survey.

We want to make sure everyone has the opportunity to have their say on what should be included in a new agreement on Closing the Gap so it is agreed to extend the deadline for the survey to Friday, 8 November 2019.

This will help build further understanding and support for the new agreement and will not impact our timeframes for negotiating with government as we were advised at the most recent Partnership Working Group meeting that COAG will not meet until early 2020.

There is a discussion booklet that has background information on Closing the Gap and sets out what will be talked about in the survey.

The survey will take a little bit of time to complete. It would be great if you can answer all the questions, but you can also just focus on the issues that you care about most.

To help you prepare your answers, you can look at a full copy here

The survey is open to everyone and can be accessed here:

https://www.naccho.org.au/programmes/coalition-of-peaks/have-your-say/

NACCHO Aboriginal Health and #RHD : @RACGP NewGP : ” This should not be the norm for our people ” Dr Olivia O’Donoghue and Pat Turner CEO NACCHO : Ending rheumatic heart disease in Australia

Australia has some of the highest rates of RHD in the world, seen almost exclusively in our Aboriginal and Torres Strait Islander communities,’ Chief Executive of the National Aboriginal Community Controlled Health Organisation (NACCHO), Patricia Turner, told newsGP.

‘A lot of non-Indigenous Australians would have never heard of this disease, yet for our communities, it continues to pose a real and serious threat.

Chief Executive of the National Aboriginal Community Controlled Health Organisation (NACCHO), Patricia Turner, told newsGP.

Article by Amanda Lyons

Read NACCHO RHD articles HERE

Rheumatic heart disease (RHD) is a serious illness, linked to disadvantage and largely preventable – and it’s rife in Australia.

RHD is a cardiac complication of acute rheumatic fever (ARF), an auto-immune illness that is itself caused by group A streptococcal infection (Strep A) which often manifests in sore throat or sores on the skin. It causes lasting damage to the heart, and has an enormous impact on the lives of those who contract it.

‘Our Aboriginal and Torres Strait Islander families are living with generations of occurrences of ARF and RHD, and for some it feels inevitable that it will affect them and their children,’ Dr Olivia O’Donoghue, Lead Aboriginal Health Training Medical Educator and Northern Territory Representative on the RACGP’s Aboriginal and Torres Strait Islander Council, told newsGP.

Read ABC Story : Rheumatic heart disease: Arnhem Land family with three afflicted sons take fight to Canberra

‘RHD and its complications can adversely affect pregnancy outcomes, young people are having major cardiac surgery which should have been preventable, and parents have asked me when their youngest child will need their heart operation as they had recently been diagnosed with ARF.

‘This should not be the norm for our people and something needs to be done to rectify this situation.’

Once ARF has developed into RHD, it requires expensive and complex management involving the coordination of multiple services, including oral healthcare, interventional cardiology and primary care. Patients require regular cardiac monitoring and often surgery.

If ARF is diagnosed in time, RHD can be prevented by bicillin injections; however, this treatment regime is not easy.

‘Regular injections of Bicillin L-A for prophylaxis against RHD are given, three to four times weekly, for an average of 10-plus years, and they are painful,’ Dr O’Donoghue explained.

‘Trying to explain to young children why they need to come in every month for these injections is challenging and heartbreaking.’

Even better than bicillin injections is prevention of ARF in the first place, and work is currently underway by RHD-focused organisation END RHD to create a vaccine against Strep A.

Dr O’Donoghue sees this initiative, and its recent funding boost from the Federal Government, as a positive step, although she would also like to see research into ARF treatment options, as well.

‘The discovery and development of a vaccine against Strep A infection would significantly decrease the burden of disease of ARF and RHD on individuals, families, communities and the health system,’ she said.

‘An interim goal would be the development of an alternative to the three-to-four weekly Bicillin L-A injection which is less burdensome to individuals and those who are administering them.’

Above added by NACCHO : Telethon Kids : Written for kids, by kids from the remote Aboriginal community of Barunga, ‘Boom Boom’ aims to teach children how to prevent deadly rheumatic heart disease (RHD).

Ms Turner is also supportive of the END RHD vaccine work, but wants to see practical, hands-on solutions for those who are suffering in the present.

Pat-Turner-article.jpgCEO of NACCHO, Patricia Turner, believes it is imperative to act decisively on Australia’s high rates of ARF and RHD.

‘A Strep A vaccine would be a game-changer, but developing it will take years and people are dying now – we need to make sure that the really exciting investments in science are coupled with on-the-ground action,’ she said.

Because ARF and RHD have significant links to disadvantage, Dr O’Donoghue believes their elimination will require a focus on the social as well as medical determinants of health – and that this needs to go beyond simple informational campaigns.

‘The onus of prevention should not be put solely on the individual or the family,’ she said. ‘It is not acceptable to say we just need to educate parents and families about personal and household hygiene standards when the surrounding systems make it challenging to provide healthy food choices, clothing, uncrowded dwellings, and to send children to school.

‘There is only so much the health system can do in isolation of improvements in housing, infrastructure and education services, such as access to quality education and services in communities, like supermarkets with affordable fresh produce and cleaning supplies.’

Ms Turner agrees that addressing social determinants of health is critical to ending RHD, outlining some practical requirements she sees as vital in the fight against the disease.

‘We need investment in comprehensive, community-controlled primary care services, so people can get their sore throats and skin sores assessed and treated in order to stop them leading to RHD,’ she said.

‘Regular antibiotic injections reduce the risk of ARF by 80%, but if people can’t get to the clinic or aren’t well-cared for when they get there, we are missing that chance to stop its development.

‘We need to support our clinics to deliver these injections and provide ongoing care for people to live with this lifelong condition.’

Above all, Ms Turner warns that urgent action must be taken now, to guard against poor consequences for the future.

‘Rates of ARF are continuing to rise – by 2031, more than 10,000 Aboriginal and Torres Strait Islander people will develop ARF or RHD,’ she said.

‘Of these people, more than 500 will die, and their medical treatment will cost the health system over $300 million dollars.

‘It’s a no-brainer that we need investment to tackle this disease – no child born in Australia today should die of RHD.

NACCHO Aboriginal Health and @END_RHD @telethonkids #RHD : Aboriginal and Torres Strait Islander peak bodies welcome Minister @KenWyattMP announcement of $35 million funding for vaccine to end rheumatic heart disease

“Today is a game-changing step. Ending RHD is a critical, tangible target to close the gap in Indigenous life expectancy.

Our Government is building on the work of the Coalition to Advance New Vaccines Against Group A Streptococcus (CANVAS) initiative, by providing $35 million over 3 years to fund the creation of a vaccine that will bring an end, once and for all, to RHD in Australia.

The trials and development, led by Australia’s leading infectious disease experts and coordinated by the Telethon Kids Institute, will give hope to thousands of First Nations people whose lives and families have been catastrophically affected by this illness.”

The funding announced today by Indigenous Health Minister Ken Wyatt AM is being provided from the Medical Research Future Fund (MRFF).

The eradication of rheumatic heart disease, a deadly and devastating illness largely affecting Indigenous communities, is taking a major step forward, with the Federal Government investing $35 million in the development of a vaccine to combat the disease.

SEE Full Press Release Part 2 Below

Pictured below  : Saving the lives of children like 7 year old Tenaya, who has Rheumatic Heart Disease – Perth Hospital

“It is wonderful that the Commonwealth Government research funds have been directed to address this leading cause of inequality for young Aboriginal and Torres Strait Islander people in Australia. It is a turning point in progress towards a Strep A vaccine.

The Aboriginal Community Controlled Health sector welcomes this funding for the Strep A vaccine as one part of the work needed to end RHD.

It does not distract us from the ultimate goal of addressing the social and environmental factors – such as inequality, overcrowding, inadequate housing infrastructure, insufficient hygiene infrastructure and limited access to appropriate health services – which drive the high rates of RHD in Australia.

We hope that research funds will be mirrored by investment in frontline health services, such as ours, as part of a comprehensive strategy to end rheumatic heart disease in Australia”

NACCHO CEO Ms Pat Turner AM

ACHWA was represented at the launch by Vicki O’Donnell Chairperson

Part 1 : Aboriginal and Torres Strait Islander peak bodies welcome Federal Government funding for new Australian-led Strep A vaccine  

Download full Press Release 

ACCHO_END RHD Statement 240219 Announcement_

Aboriginal and Torres Strait Islander peak bodies for the Aboriginal Community Controlled Health sector as leaders of END RHD advocacy alliance, warmly welcome Minister Wyatt’s announcement today of $35 million of funding for the acceleration of an Australian-led Strep A vaccine.

The National Aboriginal Community Controlled Health Organisation (NACCHO), Aboriginal Medical Services Alliance Northern Territory (AMSANT), Aboriginal Health Council of South Australia (AHCSA), Queensland Aboriginal and Islander Health Council (QAIHC), Aboriginal Health Medical Research Council of New South Wales (AH&MRC), Aboriginal Health Council of Western Australia (AHCWA) are Founding Members of END RHD, leading a campaign calling for an end to rheumatic heart disease in Australia.

We congratulate Telethon Kids Institute, one of our fellow END RHD founding members, on being awarded this vital funding, and look forward to further engagement with researchers, communities, and other stakeholders as the project progresses.

END RHD has been calling for investment in strategic research and technology – including the development of a vaccine – as part of a range of funding priorities needed to eliminate rheumatic heart disease (RHD) in Australia. This funding is an important step towards that goal.

A vaccine has an important role to play in reducing the rates of rheumatic heart disease in years to come. We celebrate this announcement and recognise it is one important part of the comprehensive action needed to end RHD in Australia, and truly close the gap in health outcomes for Aboriginal and Torres Strait Islander Australians.

We invite you to join the movement to end rheumatic heart disease in Australia. You can pledge your support for the END RHD campaign at https://endrhd.org.au/take-action/

Part 2 

It will allow manufacture and testing of a number of vaccines currently being developed, and fast-tracking and funding of clinical trials in Australia. The aim is to accelerate availability of a vaccine for use in Australia and internationally.

“Today is a game-changing step,” said Minister Wyatt. “Ending RHD is a critical, tangible target to close the gap in Indigenous life expectancy.

“Our Government is building on the work of the Coalition to Advance New Vaccines Against Group A Streptococcus (CANVAS) initiative, by providing $35 million over 3 years to fund the creation of a vaccine that will bring an end, once and for all, to RHD in Australia.

“The trials and development, led by Australia’s leading infectious disease experts and coordinated by the Telethon Kids Institute, will give hope to thousands of First Nations people whose lives and families have been catastrophically affected by this illness.”

Rheumatic Heart Disease (RHD) is a complication of bacterial Streptococcus A infections of the throat and skin. Strep A and RHD are major causes of death around the world, with Strep A killing more than 500,000 people each year.

Australia has one of the highest incidences of rheumatic heart disease in the world. It is the leading cause of cardiovascular inequality between Indigenous and non-Indigenous Australians and is most commonly seen in adolescents and young adults.

Alarmingly, Aboriginal and Torres Strait Islander people are 64 times more likely than non Indigenous people to develop rheumatic heart disease, and nearly 20 times as likely to die from it.

Every year in Australia, nearly 250 children are diagnosed with acute rheumatic fever at an average age of 10 years. 50 – 150 people, mainly indigenous children or adolescents, die from RHD every year.

“Rheumatic heart disease kills young people and devastates families. This funding will save countless lives in Australia and beyond,” said Health Minister Greg Hunt.

“This initiative will also benefit Australia by ensuring it continues to be the global leader in Strep A and RHD research and public health implementation, and can build on its worldclass clinical trial and medical industry.

“Vulnerable communities, in particular Indigenous communities, will get the medicines they need; and Australian industry will have the opportunity to collaborate in developing and distributing the breakthrough vaccine, both here and overseas.”

The End RHD vaccine initiative will be directed by Prof Jonathan Carapetis AM (Director of the Telethon Kids Institute in Perth) and overseen by a Scientific Advisory Board including leading Australian and International experts.

The project will also be informed by an Indigenous Advisory Committee who will ensure that the voices of our First Nations people are heard and acknowledged, and that all components of the work are culturally safe and appropriate.

This latest initiative builds on funding already provided under our Government’s Rheumatic Fever Strategy. This includes $12.8 million to continue support for the existing state-based register and control programs in the Northern Territory, Western Australia, Queensland and South Australia; and new funding of $6 million for focused prevention activities in high-risk communities to prevent the initial incidence of acute rheumatic fever.

Our Government has also provided $165,000 to the END RHD Alliance to complete development of a roadmap to eliminate the disease in Australia.

“The death and suffering caused by Strep A and RHD is preventable,” said Minister Hunt. “RHD can be stopped and we want to end it on our watch.

“This is a further demonstration of our Government’s strong commitment to health and medical research, which is a key pillar of our Government’s long term health plan.”

NACCHO Aboriginal Health and #RHD : Download the @END_RHD_CRE report :  Urgent action needed to stop 500 rheumatic heart disease (RHD) preventable deaths

” Aboriginal and Torres Strait Islander children are 55 times more likely to die of rheumatic heart disease than other Australian children.

We’re seeking a commitment from all political parties to stop this preventable disease from ever taking the life of another child in Australia.”

Ms Pat Turner, CEO NACCHO Founding Member of END RHD speaking at #Laborconf18 this week on the need for urgent action to reduce the burden of rheumatic heart disease among Aboriginal and Torres Strait Islander people. Together we can

 ” A new report predicts rheumatic heart disease (RHD) will lead to over 500 preventable deaths and cost the Australian health system $317 million by 2031 if no further action to tackle the disease is taken.

The Cost of Inaction on Rheumatic Heart Disease – published by the END RHD Centre of Research Excellence (END RHD CRE), based at the Telethon Kids Institute – puts the number of people affected by RHD or its precursor, acute rheumatic fever, at over 4,500.”

Download RHD report HERE

cost-of-inaction-on-rheumatic-heart-disease

By 2031, the report estimates that number will triple to nearly 15,000 people.

Key findings:

  • There are currently 4,539 people living with rheumatic heart disease
  •  If no further action is taken to address rheumatic heart disease, a further 10,212 Aboriginal and Torres Strait Islander people are projected to develop the disease or its precursor – acute rheumatic fever – by 2031. Of these people: o 1,370 will need heart surgery
  •  563 with RHD will die
  • $317 million will be spent on medical care

Lead author Dr Rosemary Wyber said almost all of those predicted to develop acute rheumatic fever would be Aboriginal or Torres Strait Islander children and teenagers.

“Make no mistake about it – when we talk about the cost of inaction on rheumatic heart disease, we’re talking about the burden of disease for another generation of Aboriginal and Torres Strait Islander children and their communities,” Dr Wyber said.

The report also predicted that 1,370 people with the disease will need heart surgery and 563 will die with RHD.

“As a GP working in remote communities, I have seen first-hand the toll of RHD and the devastating impact it has on families and communities,” Dr Wyber said.

“This suffering is preventable. Deaths can be avoided, financial costs can be reduced, and new cases of disease prevented.”

RHD is caused by an abnormal reaction to the common Strep A infection. There is no cure for the disease, and people require an injection of long-acting penicillin every 21-28 days for at least a decade to stop it worsening. If people do not receive these injections, the disease can lead to heart failure or stroke.

“RHD should no longer exist in a country like Australia, yet our research predicts the human and economic toll will only continue to rise if we don’t see a significant increase in resourcing and investment in community-led models of care” Dr Wyber said.

“The social and environmental causes of RHD are linked to many other diseases of disparity, such as trachoma and otitis media. By addressing the causes, not only can we end RHD – we’ll significantly help close the gap.”

World renowned RHD expert and Director of the Telethon Kids Institute, Professor Jonathan Carapetis AM, said that in the past year there have been significant steps towards tackling RHD in Australia.

“In February, Minister Wyatt committed to the development of a roadmap; in May, Australia supported a World Health Assembly resolution to eliminate the disease globally; and in October, Minister Wyatt and Shadow Assistant Minister Snowdon made a bipartisan commitment to end RHD in this country” Professor Carapetis said.

This morning I moved a resolution at #ALPConf18 to make Rheumatic heart disease a federal health priority. The motion was seconded by Senator Malarndirri McCarthy – Northern Territory and was unanimously supported by delegates.

Rheumatic heart disease is a disease of poverty that disproportionately affects some of our youngest and most vulnerable First Australians.

WATCH VIDEO HERE 

“So with a growing political will, strong Aboriginal and Torres Strait Islander leadership, and a solid evidence-base backed by 25 years of research, I believe it’s possible to change the trajectory outlined by this report. We all need to work together and action is urgently needed.”

See Pat Turners full speech from October launch 

The report looked at the four jurisdictions with the highest recorded burden of disease: Western Australia, South Australia, the Northern Territory, and Queensland.

Researchers used linked hospital admissions and mortality data over the last two decades to project cases likely to occur between mid-2016 and 2031.

The findings will inform part of the RHD Endgame Strategy, currently being developed by the END RHD CRE and due for release in 2020.

The report was led by the END RHD CRE, with data collected and analysed through the NHMRC Project Grant ‘Burden of rheumatic heart disease (RHD) and impact of prevention strategies: comprehensive evidence to drive the RHD Endgame’.

NACCHO Aboriginal Heart Health : Download @AIHW Report on #cardiac care for Indigenous people. Mortality falling but still “much higher” than non-Indigenous pop. Investment needed to #ClosetheGap #ACCHOs @Aus_Lighthouse @END_RHD @HeartAust

 ” Heart-related conditions, such as coronary heart disease, heart failure, and rheumatic heart disease (RHD), contribute substantially to poor health and reduced life expectancy among Aboriginal and Torres Strait Islander people.

Cardiac conditions are more common among Indigenous than non-Indigenous Australians, and there are many interconnected reasons for this, including higher rates of risk factors for cardiac conditions (such as smoking, low levels of physical activity, overweight or obesity, diabetes, and high blood pressure), and poorer access to preventative health services “

AIHW Report Released July 6

aihw-Cardiac Report

Read Previous NACCHO Aboriginal Heart Health : @HeartAust #NickysMessage “Heart disease is the number one killer of Aboriginal and Torres Strait Islander peoples. “

Read also over 50 Aboriginal Health and Heart Articles published over 6 Years

Better Cardiac Care project and selected extracts

The Better Cardiac Care for Aboriginal and Torres Strait Islander People project is an initiative that was developed at the Better Cardiac Care for Aboriginal and Torres Strait Islander People Forum, held in March 2014 (BCCF 2014).

Representatives from various Indigenous and other organisations, as well as Australian Government and jurisdictional health departments attended the forum.

The project aims to reduce mortality and morbidity from cardiac conditions among Indigenous Australians, by increasing access to services, better managing risk factors and treatment, and improving coordination of care.

The forum established 5 priority areas of interventions that health services should undertake to improve cardiac care for Indigenous Australians, which:

  • are aligned with national and international best-practice guidelines for cardiac care and chronic disease
  • were informed by the Essential Service Standards for Equitable National Cardiovascular Care
  • focus on providing sustainable models of care built around partnerships between all health service providers.

SEE AIHW WEBSITE

The 5 priority areas are:

  • primary preventive care—early cardiovascular risk assessment and management
  • clinical suspicion of disease—timely diagnosis of heart disease and heart failure
  • acute episode—guideline-based therapy for acute coronary syndrome
  • ongoing care—optimisation of health status and provision of ongoing preventive care
  • rheumatic heart disease—strengthening the diagnosis, notification, and follow-up of RHD.

A set of 21 Better Cardiac Care measures (Table 1.1) were also developed to track the implementation and monitoring of the priority areas and associated actions

2 Results

Priority area 1: Early cardiovascular risk assessment and management

Priority area 1 of the Better Cardiac Care project is early cardiovascular risk assessment and management. This is based on the premise that all Aboriginal and Torres Strait Islander people with no known cardiac disease should receive:

  • an annual cardiovascular risk assessment
  • appropriate management and follow-up for identified cardiac disease risk factors
  • lifestyle modification advice appropriate to their cardiovascular risk level, as per current guidelines (NACCHO & RACGP 2012).

Primary prevention in the form of early and consistent risk factor identification and management will improve long-term outcomes for Indigenous Australians, reduce the population burden of chronic cardiac disease, and improve the appropriate delivery of care by the health-care system (BCCF 2014).

Three measures were agreed upon within this priority area, and updated data are available for measure 1.1 on health assessments.

The data for measure 1.2 are expected to become available for the next report, which will be provided based on the AIHW data collection on the national key performance indicators for Aboriginal and Torres Strait Islander primary health care.

Measure 1.1: Annual health assessments

This measure reports on the number and proportion of Indigenous Australians who had a Medicare Benefits Schedule (MBS) health assessment in the previous 12 months (Table B.2 in Appendix B contains the list of relevant MBS item numbers included in the measure).

Why is it important?

Health assessments aim to increase preventative health opportunities, detect chronic disease risk factors, manage existing chronic disease, and reduce inequities in access to primary care for Indigenous Australians. Early detection and management of risk factors for cardiac disease (such as smoking, physical inactivity, high blood pressure) can reduce the incidence of cardiac disease and lessen its severity.

All Indigenous Australians are eligible for an annual health assessment, which is listed as item 715 on the MBS.This comprehensive health asessement covers a wide variety of risk factors related to cardiac disease and other chronic diseases, including medical history, nutrition, physical activity, smoking and alcohol intake, living conditions, and body mass index, although it is not a specific cardiovascular risk assessment. People within specified target groups may also be eligible for other types of MBS health assessments (Department of Health 2014), which are referred to as ‘general’ health assessments in this report.

Results

Overall:

  • In 2015–16, more than one-quarter of Indigenous Australians (27%, or an estimated 199,400 people) received a health assessment—about 26% received an MBS item 715 health assessment, and about 1% received a general health assessment (Figure 1.1a).

Time trend:

  • Between 2004–05 and 2015–16, the age-standardised proportion of Indigenous Australians who had an MBS health assessment rose from 2% to 27% for females, and from 2% to 24% for males (Figure 1.1b).
  • From 2014–15 to 2015–16, the overall proportion rose by 3 percentage points.
  • A marked increase occurred from 2010–11, coinciding with the introduction of the Australian Government’s Indigenous Chronic Disease Package.

Sex and age:

In 2015–16:

  • more Indigenous females than males had an MBS health assessment (Figure 1.1b)
  • about one-quarter (25%) of Indigenous children aged under 15 had an MBS health assessment. Among Indigenous Australians aged 15 and over, the proportion rose from 21% among those aged 15–24 to 38% among those aged 65 and over (Figure 1.1c).

State/territory and remoteness area:

In 2015–16, the proportion of Indigenous Australians who had an MBS health assessment was:

  • highest in Queensland (33%), and lowest in Tasmania (9%) (Figure 1.1d)
  • highest in Inner/Outer regional areas combined (29%), and lowest in Major cities (21%)

Priority area 2: Timely diagnosis of heart disease and heart failure

Priority area 2 of the Better Cardiac Care project is timely diagnosis of heart disease and heart failure.

This is based on the premise that all Aboriginal and Torres Strait Islander people suspected of having heart disease or heart failure should receive appropriate initial diagnostic services (such as stress testing or coronary angiography for ischaemic heart disease, or echocardiography for heart failure and rheumatic heart disease) as close to the patient’s home as possible, within acceptable timeframes according to the level of risk and the patient’s condition (BCCF 2014).

Of the 3 measures recommended for this priority area, data are available for:

  • measure 2.1 for Medicare-listed diagnostic items
  • measure 2.3 for cardiologist review of suspected/confirmed cardiac disease

Measure 2.1: Cardiac-related diagnosis

This measure reports on the number and proportion of Indigenous Australians who had 1 or more relevant cardiac-related MBS diagnostic item claims in the previous 12 months, compared with non-Indigenous Australians (Table B.2 in Appendix B contains the list of relevant MBS item numbers included in the measure).The current report includes additional MBS items within measure 2.1, compared with the second national report (AIHW 2016); as such the results are not comparable. Additional MBS items were used to more accurately capture the status of cardiac-related diagnoses, and were obtained from the Cardiac Services Clinical Committee of the Medical Benefit Schedule Review Taskforce (Department of Health 2017).

Why is it important?

People suspected of having cardiac disease should receive appropriate and timely diagnostic services. Categories of diagnostic tests captured by this measure include:

  • diagnostic procedures and investigations—19 items that include various kinds of electrocardiography, and pacemaker and defibrillator testing
  • diagnostic imaging services—25 items that include various kinds of echocardiography, computed tomography scans and angiography (Department of Health 2018).

Results

Overall:

In 2015–16:

  • 64,909 MBS claims for cardiac-related diagnostic items were made for Indigenous patients (age-standardised proportion of 13.2%), compared with 3,178,327 claims for non-Indigenous patients (proportion of 12.1%).
  • 45,932 claims for diagnostic procedures and investigations (age-standardised proportion of 9.3%), and 18,977 claims for diagnostic imaging services (age-standardised proportion of 3.9%) were made for Indigenous patients—both proportions were slightly higher than for non-Indigenous Australians (Figure 2.1a).

Time trend:

  • Between 2004–05 and 2015–16, the age-standardised proportion of Indigenous Australians who had cardiac-related diagnostic items MBS claims rose from 6.8% to 10.4%, with a similar pattern for non-Indigenous Australians (rising from 6.9% to 9.1%) (Figure 2.1b).

Sex and age:

In 2015–16, the proportion of Indigenous Australians who had MBS claims for cardiac-related diagnostic items:

  • rose with increasing age, with the lowest proportion among those aged under 25. It was slightly higher than that of non-Indigenous Australians in all age groups, except for those aged 65 and over, where proportions were higher among non-Indigenous Australians (Figure 2.1c)
  • was lower overall than that of non-Indigenous Australians, for men and women, with Indigenous women having slightly higher proportions than Indigenous men (Figure 2.1d).

Better Cardiac Care measures for Aboriginal and Torres Strait Islander people 2017 11

State/territory and remoteness area:

In 2015–16, the proportions of MBS claims for cardiac-related diagnostic items:

  • ranged from 3% to 13% across states and territories, and from 7% to 8% across remoteness areas among Indigenous Australians (figures 2.1e and 2.1f)
  • were lower among Indigenous Australians living in Major cities and Inner/Outer regional areas combined than their non-Indigenous counterparts (Figure 2.1f).

Priority area 4: Optimisation of health status and provision of ongoing preventive care

Priority area 4 is optimisation of health status and provision of ongoing preventive care. This is based on the premise that all Aboriginal and Torres Strait Islander people with cardiac conditions should receive ongoing multidisciplinary primary health care and specialist physician follow-up as required, to prevent further illness, and to optimise health status (BCCF 2014).

Of the 4 measures recommended for this priority area, MBS data are available for:

  • measure 4.2 for follow-up after receiving a cardiovascular therapeutic procedure
  • measure 4.3 for specialist physician review after a cardiovascular therapeutic procedure

Priority area 5: Strengthening the diagnosis, notification and follow-up of rheumatic heart disease

Priority area 5 of the Better Cardiac Care project is strengthening the diagnosis, notification and follow-up of rheumatic heart disease (RHD) (BCCF 2014). This is based on the premise that:

  • all Aboriginal and Torres Strait Islander people suspected to have acute rheumatic fever (ARF) or RHD should receive an echocardiogram as early as possible
  • new cases should be automatically reported to a central register to help track patients, and ensure ongoing care.

There is no diagnostic pathology test for ARF; instead, its diagnosis is based on a clinical decision (RHD Australia et al. 2012). The clinical manifestation of ARF is non-specific and can be atypical, with delays in both presentation and referral of patients. As a result, ARF can often go undetected in the acute stage, leading to ongoing complications and lifelong morbidity.

Of the 4 measures recommended for this priority area, data are available from RHD registers in Queensland, Western Australia, South Australia, and the Northern Territory for:

  • measure 5.1 for the annual incidence of ARF and RHD
  • measure 5.2 for recurrent ARF
  • measure 5.3 for treatment with benzathine penicillin G doses
  • measure 5.4 for echocardiograms among patients with severe or moderate RHD.

Aboriginal Health #RHD #WHA71 #RHDACTION #IndigenousWFPHA @END_RHD : Australia a key contributor to global commitment to end deadly #rheumaticheartdisease in Australia @TheAHCWA @ama_media @AMSANTaus @HeartAust @MenziesResearch @NACCHOAustralia @telethonkids

The World Health Organisation resolution for global action to tackle rheumatic heart disease (RHD) will have significant implications for Australia, which has some of the highest rates of the disease in the world

This disease disproportionately affects some of the most vulnerable communities around the world, including our Aboriginal and Torres Strait Islander communities in Australia.

It’s the most common acquired cardiovascular disease in children and young adults in low resource settings.

More than any other condition, RHD is emblematic of the health gap between Indigenous and non-Indigenous Australians”

Institute Director Professor Jonathan Carapetis said the resolution, passed late Friday May 25 , will give RHD the attention required to eliminate what is mostly a preventable disease

Telethon Kids Institute is a founding partner of END RHD, a national alliance against the disease and home to the END RHD Centre of Research Excellence.

Rheumatic fever is caused by an abnormal immune reaction to Strep A infection of the skin and throat and, when left untreated, can lead to rheumatic heart disease – in turn causing disability and premature death. It affects 30 million people worldwide.

The resolution was passed at the 71st World Health Assembly in Geneva, attended by delegates from 194 WHO Member States. The commitment aims to consolidate efforts worldwide towards the prevention, control and elimination of RHD.


“This resolution puts RHD front and centre on the global agenda, meaning governments will be compelled to act,” Professor Carapetis said.


“Countries with a high burden of the disease will be required to prioritise the implementation of strategies aimed at prevention and treatment, with countries with a low burden providing support and funding.”

Watch sharing a heart beat

This film will give health messages and information for women with severe rheumatic heart disease. A film about Aboriginal women and the relationship between culture and health and how this influences care

Professor Carapetis said the passing of the resolution on the global stage reflected growing momentum to end RHD in Australia, and followed a February roundtable convened by Indigenous Health Minister Ken Wyatt with END RHD representatives, that resulted in a commitment to develop a roadmap to end the disease in Australia.

See Previous NACCHO RHD posts

NACCHO Aboriginal Heart @RHDAustralia Health :

In 11 languages health messages speak to patients

Professor Carapetis applauded the Australian Government for playing a leading role in drafting the resolution.

“We look forward to working closely with all relevant ministers and departments on the implementation of a comprehensive, research-backed strategy to end the disease in Australia.

“With more than 30 years of research behind us, combined with Indigenous leadership and growing political will at home and internationally, we’ve never been in a stronger position to make ending RHD a reality in Australia.”


About END RHD

END RHD is an alliance of health, research and community organisations seeking to amplify efforts to end RHD in Australia through advocacy and engagement.  The founding partners are the Australian Medical Association (AMA), National Heart Foundation of AustraliaAboriginal Health Council of Western Australia (AHCWA), National Aboriginal Community Controlled Health Organisation (NACCHO), Menzies School of Health ResearchAboriginal Medical Services Alliance Northern Territory (AMSANT), and the Telethon Kids Institute (home of the END RHD Centre for Research Excellence).

NACCHO Aboriginal Health and #RHD @RHDAustralia and @MenziesResearch release an educational short film on rheumatic heart disease in pregnancy

“I chose to help create this film because I wanted to help young women living with RHD and make sure they can access information about contraception, pregnancy and planning for a baby.

What is the take home message from the film?

“The film points out the main needs of a young woman living with RHD to help care for herself, her heart and her baby. The film re-assures young women with RHD that they can have a normal healthy pregnancy; they just need to take extra care of themselves.”

RHDAustralia sat down with one of the directors, Ms Kenya McAdam, a 21 year old Jaru and Kira woman from Halls Creek, Western Australia currently living in Katherine, Northern Territory.

See Kenya’s full story PART 2 Below

For Kenya this film was deeply personal and an intimate reflection on life as a young woman living with RHD. Kenya developed RHD at 15 years old and required open heart surgery within 3 months of diagnosis. Since that time, Kenya has worked with RHDAustralia to raise awareness about this 100% preventable disease.

The target audience for this film is girls and young women from ages 13 to 20s who have mild to moderate RHD

You can find these films and other important resources on the RHDAustralia resource page.

NACCHO and AMA support RHD Prevention

With Aboriginal and Torres Strait Islander Australians still 20 times more likely to die from RHD, the AMA’s call for firm targets and a comprehensive and consultative strategy is welcome. We encourage governments to adopt these recommendations immediately.

“As noted by the AMA, it is absolutely critical that governments work in close partnership with Aboriginal health bodies. Without strong community controlled health services, achieving these targets for reducing RHD will be impossible.

While this is a long term challenge, the human impacts on Aboriginal and Torres Strait Islander communities are being felt deeply right now. Action is required urgently.

NACCHO is standing ready to work with the AMA and governments to develop and implement these measures. We have to work together and we have to do it now.”

National Aboriginal Community Controlled Health Organisation (NACCHO) Chairperson Matthew Cooke pictured above at Danila Dilba Health Service NT with AMA President Dr Michael Gannon

NACCHO Aboriginal Health #RHD : AMA Report Card on Indigenous Health highlights need for Aboriginal community controlled services

The RHD Story

A new film written and directed by a group of Northern Territory Indigenous women follows the story of Tess, a young women whose boyfriend, Jamie, reveals his desire to start a family.

While surprised and happy, she’s not told Jamie about her rheumatic heart disease (RHD).

She’s not sure how her heart disease will affect her pregnancy or if she can have a baby at all. Looking for answers, Tess turns to her best mate, her mum and the local health clinic for guidance on what to do next.

Will they have the answers?

The film will be launched in Bagot Community, Darwin on 6 October. Sharing a Heartbeat is freely available in English and Kriol with plans to make the film available in more Indigenous languages.

You can find these films and other important resources on the RHDAustralia resource page.  Additional print resources are linked with the English and Kriol through the resource page on our website.

By embracing two-ways learning and a spirit of cross cultural cooperation, RHDAustralia and Menzies School of Health Research are proud to announce the completion of the first ever   educational short film on rheumatic heart disease in pregnancy entitled Sharing a Heartbeat.

Hi Kenya, why did you decide to get involved in the creation of this film?

“I chose to help create this film because I wanted to help young women living with RHD and make sure they can access information about contraception, pregnancy and planning for a baby.

What is the take home message from the film?

“The film points out the main needs of a young woman living with RHD to help care for herself, her heart and her baby. The film re-assures young women with RHD that they can have a normal healthy pregnancy; they just need to take extra care of themselves.”

From a personal perspective, the film answered my unanswered questions. For other young women with RHD, I think it will help them understand more about approaching pregnancy.”

Having Kenya involved from the very start was central to ensuring the film was produced from a patient centric, woman centric and gender sensitive standpoint. But of equal importance was making certain it was developed to be culturally appropriate and safe. This was accomplished by including Indigenous women throughout the process, whether in the design, development, testing or making of the resource.

One of the key contributors alongside Kenya was Noeletta McKenzie whose daughter, Raychelle, was diagnosed with RHD four years ago at the age of nine. Noeletta’s been involved in numerous community development projects in Maningrida and Darwin and was quick to answer a call for assistance with the making of the film. “I saw the advertisement on the RHDAustralia Facebook page and enquired about how I could support with the development of the resource.” Noeletta helped to co-write the film and to guide and consult the actors on set.

When asked about why it was important to have Indigenous women involved in the making of the film she told us “I feel that as the resource is targeted at Indigenous young women, we needed to ensure that they were featured. It’s also about cultural safety and cultural context, educating our young women in our way.”
Leading by example, Noeletta is instilling these qualities into her daughter as well. When asked if the film has helped her daughter learn more about her RHD, Noeletta said “She’s well aware of the disease and how as a young woman it has affected her life. She would like to be a part of an advisory group to share her experience and pass on her knowledge.”

Acknowledgements

There were many people involving in the making of this film and we would like to thank the actors, directors, writers, and producers for producing such a well-crafted and meaningful film that is educational, culturally responsive, collaborative and meaningful. This film was produced by RHDAustralia and made possible with a grant from NTPHN.

Background

Literature reviews and content surveillance of health promotion material from Australia and New Zealand shows that there is very little information available for girls and women who have RHD. A recently completed study conducted by the Australian Maternity Outcomes Surveillance System (AMOSS) has shown that for Indigenous women in Australia, there are many misconceptions around rheumatic heart disease (RHD) and how it can impact their pregnancies.

Films directed by Indigenous women on any content are rare. Rheumatic heart disease is up to twice as common in women, and tends to affect women during their child bearing years. There is a 30-50% increased cardiac workload in normal pregnancy.

The target audience for this film is girls and young women from ages 13 to 20s who have mild to moderate RHD.

Part 2 Rheumatic heart disease a blight on Indigenous population

When Kenya McAdam wasn’t bedridden as a child, she would drag herself to school and sit in the classroom. “I wouldn’t move,” says the 21-year-old childcare worker, whose current good health is proof that she has survived rheumatic heart disease.

From The Australian

But Australia has a high level of the disease, which is caused by a bacterial infection of the throat and skin and is common in poverty-stricken nations.

Some of the nation’s leading medical researchers are meeting today in Darwin to create a plan to wipe out the life-threatening condition, which disproportionately affects indigenous Australians.

Pediatrician Jonathan Carapetis, who has led research efforts for 20 years, says young people such as Ms McAdam are up to 122 times more likely to contract the disease than non-indigenous youngsters. And it affects one in 43 indigenous people living in ­remote and rural Australia.

“It’s entirely preventable, yet the rates of this devastating condition among Aboriginal and Torres Strait Islander people are among the highest in the world,” says Professor Carapetis, director of Perth’s Telethon Kids Institute. “It should no longer exist in Australia.”

Rheumatic heart disease can result in permanent damage to the heart if it is not treated with antibiotics. It is caused by a bacterial infection of the throat and skin, which can result in heart failure and other complications, including stroke, without antibiotic treatment.

Ms McAdam’s life was saved by heart surgery to repair leaky valves after a cardiac arrest and years of breathlessness. “My mum thought that only older people suffer from heart attacks,” she said.

Her younger brother and sister must endure a painful penicillin injection every month for up to 10 years to prevent further infections.

But many affected indigenous youth fail to receive more than half their monthly penicillin requirement. More than 2600 ­people in the Northern Territory have rheumatic heart disease, while sufferers in Western Australia’s remote Kimberley Region are recorded as dying at an average age of 41.

Professor Carapetis said research institutes around Australia were collaborating on ways to prevent and treat streptococcus infections that lead to the disease, such as long-acting penicillin or an antibacterial vaccine.

Heather D’Antoine, from Menzies School of Health Research’s Aboriginal Programs, said today’s meeting to discuss lifesaving initiatives “can’t come soon enough”.

“The impact on our community is devastating; children must travel for heart surgery; young adults live with premature disability; and pregnant women face high-risk pregnancies,” she said.

NACCHO Aboriginal Health Rheumatic Heart Disease Q and A Darwin :6000 sufferers in Indigenous Australia – Why?

fastfactsflyer_web_page_1

 “RHD is entirely preventable. It is a tragedy this disease is devastating Indigenous communities. So few in Australia are aware of its cost to lives, to livelihoods, to the whole community. In NZ it is even more problematic but there is a concerted and well funded government attack on it. This needs to happen in the Northern Territory and the rest of remote Australia”.

Adam El Gamel, Heart Surgeon

This is a national responsibility. Why are some Australians still dying of this preventable disease? The way to reduce is to improve living conditions, introduce better diagnosis and treatment of sore throats and skin infections. We cannot afford to let another decade pass as more Australians die from a disease of disadvantage. It is unacceptable”.

Professor Bart Currie

6000 sufferers in Indigenous Australia – Why?

Q&A Thursday 20 October 2016

6.00 – 8.00 pm NT Parliament House Mitchell St Darwin

Rheumatic Heart Disease (RHD) has been all but unknown in white Australia since 1930s but is taking a dreadful toll in Indigenous NT. More than 6000 Indigenous people are known to have Rheumatic Heart Disease, or its precursor Rheumatic Fever,in Australia, most of them children and many in the NT. There are likely many more.

Download the Fast Facts Flyer

fastfactsflyer_web

Far too few people are aware of this entirely preventable disease. Frequently children require open heart surgery which involves thousands of kilometres of travel to metropolitan (i.e. Southern) hospitals from the NT, and in the earlier stages, painful injections which must be given at least monthly – a huge job in very remote areas. Treatment is very costly and the effect of the disease on their education, employment, life style and future can be catastrophic. This link is a quick guide to RHD in Australia https://www.rhdaustralia.org.au/things-you-need-know

Rheumatic Heart Disease Australia (RHDA) is holding a Q and A style event in Darwin. It will focus on the issues surrounding RHD: its causes and how to prevent the disease. Indigenous Territorians are 8 times more likely to be hospitalised and 20 times more likely to die from it than other Australians.

Facts about Acute Rheumatic Fever (ARF) and Rheumatic Heart Disease (RHD)

  • ARF is an illness caused by an autoimmune response to a bacterial infection commonly called the strep bacterium.
  •  ARF affects the heart and joints and sometimes the brain. Hospitalisation is required for ARF.
  •  Damage to the heart valves may remain or even progress once the ARF has resolved. This damage is known as RHD.
  •  RHD is a permanent, chronic, and sometimes fatal disease.

How RHD affects Australians

  • ARF and RHD prevalence in remote Indigenous communities of Northern and Central Australia is among the highest reported in the world.
  •  Between 2007 and 2009, 897 deaths were attributed to RHD.
  •  Aboriginal and Torres Strait Islander people are up to eight times more likely than other Australians to be hospitalised for ARF and RHD, and nearly 20 times as likely to die from the disease.
  •  Young people aged 5 – 15 years are at highest risk of a first episode of ARF. 58% of cases in the Northern Territory between 2005-2010 were in children aged 5-14. The established heart valve damage of RHD is most common in adolescents and young adults.

About RHDAustralia

  •  RHDAustralia is the National Coordination Unit supporting the control of rheumatic heart disease in Australia. Funded under the Australian Government’s Rheumatic Fever Strategy, RHDAustralia based at Menzies School of Health Research in Darwin.
  •  RHDAustralia’s mission is to prevent and reduce acute rheumatic fever and rheumatic heart disease in Australia through education, awareness raising, quality data collection and reporting systems and national collaboration.

The panel includes

  • RHD sufferers including Eddie Masina, and Kenya McAdams supported by their families
  •  Charlie King, the legendary ABC sports journalist in Darwin, an Indigenous man active in anti-violence campaigns and promoting health and safety in Indigenous communities
  •  Adam El Gamel, Heart surgeon internationally recognised as leading authority on rheumatic heart disease
  •  Professor Bart Currie, Director, Rheumatic Heart Disease Australia
  •  Marion Scrymgour, CEO Tiwi Islands Regional Council
  • Mark Munnich, legal educator and advocate, North Australian Aboriginal Justice Agency (NAAJA) 
  •  Vicki Wade, leading Indigenous health expert and advocate

Marion Scrymgour who was central to the development of new health services in the NT and was the first female Aboriginal Minister in any government in Australia has been awarded an Honorary Doctorate by Sydney University for her commitment.

 

NACCHO #closethegap RHD : Aboriginal Australia has one of the highest rates of Rheumatic Heart Disease in the world but Take Heart

RH

” You may not have heard of Rheumatic Heart Disease (RHD), but it is a killer in this country, particularly among Indigenous Australians living in the Northern territory. In fact, Australia has one of the highest rates of RHD in the world. And the worst thing? Almost every case of RHD is preventable if caught and treated early.

Rheumatic heart disease is rare and preventable, but Indigenous Australians are 19 times more likely to die from the disease.”

Dr Rob Grenfell

A documentary, filmed over two years across Australia, highlights the unusually high prevalence of rheumatic heart disease among the nation’s Indigenous community.

WATCH HERE

It focused on remote communities in the Northern Territory, where about 98 per cent of cases are Indigenous, and of those 58 per cent were aged between five and 14.

The documentary ‘Take Heart’, opens with a question: “What disease starts with a sore throat in children, and ends in open heart surgery, stroke, heart failure and premature death?”

It then takes a look into the lives of four young Indigenous Australians diagnosed with the chronic heart disease, highlighting a gaping healthcare hole in the Top End.

Darwin-based paediatric cardiologist Bo Remenyi said rheumatic heart disease was 100 per cent preventable.

“Rheumatic heart disease is a disease of poverty,” Dr Remenyi told SBS News.

“In Australian context, it’s related to poor housing, overcrowding, poor education.

“The saddest part of this is it is most common in the world in our own backyard – in Indigenous communities.”

Rheumatic heart disease is the end result of a contagious strep-germ throat infection that has been left untreated and advances beyond acute rheumatic fever.

Dr Remenyi said she feared the condition had been normalised in the Top End, where high rates of Indigenous children were diagnosed.

The Royal Flying Doctor Service says a South Australian program closing the city-country heart health gap should be rolled out nationally.

She said the majority of those diagnosed will suffer heart failure within four years.

“It’s all about recognising a sore throat, and treating it appropriately, with antibiotics, to stop the auto-immune reaction,” Dr Remenyi said.

“Strep-germ is contagious, so you spread it from one child to another child.”

Belyuen man Liddywoo Marni, 18, first developed symptoms as a three year old and after three open heart surgeries now has a mechanical valve.

“They told me that I had a bug in my heart,” he said of his diagnoses.

“I felt weak, and I felt sore throat.”

He has to have life-saving, blood-thinning medication daily and now teaches other kids in his community about the dangers.

‘Take Heart’ director Mike Hill has travelled the world filming documentaries, but couldn’t believe what was happening in his own country.

“The big take out is, it shouldn’t have to go to surgery level, because it can be stopped at a very early stage,” he told SBS News.

Although the condition has almost disappeared in non-Indigenous populations across the developed world, it still affects 30 million young people globally.

It is highly prevalent in parts of Africa, Asia, South America and New Zealand’s Maori community.

In Australia, refugees and those living in low socio-economic communities, are also at risk.

‘Take Heart’ is screening around the country.

Ad RHDA

For more information and to download the free app go to RHDAustralia’s website at rhdaustralia.org.au. RHDAustralia works collaboratively with the RHD Control Programs across Australian jurisdictions to educate and raise awareness of rheumatic fever and RHD with health professionals and communities and to collect and analyse burden of disease data. NSW clinicians can contact their local public health unit by calling 1300 066 055 to notify patients with suspected new and recurrent episodes of rheumatic fever and all patients with RHD aged under 35 years.

 

FROM BUPA

What is rheumatic heart disease?

RHD can develop when there is damage to the heart muscle or valves caused by acute rheumatic fever (ARF), an illness that causes inflammation of the heart and other parts of the body.
This damage can permanently stretch and/or scar the heart valves, which then affects the normal flow of blood through the heart and out to the rest of the body.
If left untreated, people with RHD can develop complications including an irregular heartbeat (arrhythmia), inflammation of the inner layer of the heart (endocarditis) and heart failure, have a stroke, and also experience complications during pregnancy. These conditions can lead to reduced quality of life, disability and premature death in young adults.
Heart surgery can help treat some of these issues, but it is not a cure.

What causes acute rheumatic fever?

Acute Rheumatic Fever (ARF) is an illness caused by your body’s response to an infection caused by group A streptococcus bacteria (commonly known as ‘strep’ bacteria). The strep bacteria usually cause throat infections (‘strep’ throat) and skin sores. When the body fights the infection, the immune system can sometimes over-react, by also attacking and causing inflammation in other uninfected parts of the body. This condition is called acute rheumatic fever, or ARF.

What are the symptoms of Acute Rheumatic Fever?

Symptoms of ARF include:

  • Fever.
  • Heart problems including inflammation, chest pain, heart failure.
  • Joint pain and swelling.
A bout of AFR can last several weeks and usually doesn’t cause lasting damage to the body, except for the heart valves. Repeated strep infections causing ARF can have a cumulative effect on the heart, causing more damage with each infection.

Who is at risk of developing RHD?

Aboriginal and Torres Strait Islander people are at high risk of developing RHD, particularly those living in rural and remote areas in central and northern parts of Australia, but Aboriginal and Torres Strait Islander people living in some urban areas may also be at risk.

Some immigrants from developing countries, as well as Maori and Pacific Islander peoples, are also known to be at risk of developing RHD.

The main risk factor is exposure to the strep bacteria that cause infection, thought to be due to overcrowded housing conditions, but genetics may also play a part.

This preventable disease threatens the lives of around 2 per cent of our entire Indigenous population. Most strep infections causing ARF occur in children and young people aged 5 to 14 years, although some people can still continue to get ARF well into adulthood, and it is more common in females compared with males.
Thousands of Indigenous children are currently at risk of developing ARF, simply by being exposed to the strep bacteria that cause a sore throat or strep-infected skin sores. If the infection is identified and treated quickly, usually with the antibiotic penicillin, they can make a full recovery. If not, they can go on to develop ARF and RHD, causing irreversible heart damage.

How can we help?

Today marks the launch of Take Heart, a documentary on RHD narrated by Walkley Award winning journalist Stan Grant. Please, take some time to watch it today. With awareness, we can help catch rheumatic fever in its early stages and treat it, and help prevent unnecessary disease and death in Australia.

 FROM Heart Kids

As is the case in developing countries, the champions of RHD in Australia need to collaborate and become engaged to control RHD. This coordinated approach requires commitment with professional organisations, health agencies, research providers, relevant Non-Government organisations (such as HeartKids), media, improved infrastructure in communities and community grassroots involvement.

What can be done?

1. Prevention:

  • Improve water and sanitation infrastructure within communities including upgraded water and operational sewerage systems, and landfill management
  • Functional water services, sanitation and waste disposal within Aboriginal houses
  • Establish and maintain health clinics within communities.
  • Improve information and educational resources on reducing the incidence of ARF/ RHD.

2. Building health system capacity:

  • Systematic screening and diagnosis of children in schools and communities
  • Further development of database of known and suspected ARF/ RHD patients
  • Patient follow-up to ensure adherence to treatment
  • Training of health workers to diagnose ARF and RHD
  • Standardisation of care by health professionals and workers.

3. Increasing Research:

  • Accelerating clinical trials for vaccines
  • Improving secondary treatment with new approaches towards new antibiotics and administration of antibiotics
  • Pathogenic assessment on genetic susceptibility and organism determinants
  • Development and evaluation of low cost echocardiographic screening and diagnosis
  • Monitoring the quality of penicillin supplies.

4. Improving access to medical and surgical services:

  • Reinforcing local and regional health facilities for initial treatment
  • Improving the accessibility of medical and surgical care available for serious RHD cases
  • Focusing on developing low cost and sustainable medical care and social support (e.g. accommodation, translation services, counseling, social services, and transport).

What is the Australian Government doing?

$2.5 million in funds has been provided towards RHD Australia to provide cost effective measures to help combat Rheumatic Heart Disease and Acute Rheumatic Fever.

A national database is being developed to support a register and control program that will initially start in the NT, WA and Queensland, and will provide training of health staff to improve diagnosis, and help patients, access regular antibiotics to prevent recurrence. Information is being developed to provide practical, simple measures for patients and to make the public more aware of the disease.

Get your Message Across to our 302 Clinics

Aboriginal Health Newspaper Closes March 16