“Eddie, your story is an important story because if we’re going to change health and the health outcomes of our people, we need to hear the stories from those who’ve been affected. …the work you do – what you think is not important – it is actually absolutely critical because you are keeping our storytellers and our cultural knowledge as a part of life.
And you are perpetuating our culture through the work that you do. The work that we do collectively to keep people alive much longer, means families and the communities have the opportunity to share the knowledge. Closing the gap is a challenge to achieve that requires a concerted effort by all.
“Because if we are to make a difference, then collectively we as Australians, not just governments, we as Australians, need to work very closely, but more importantly, we need to encourage people like Eddie to become the storytellers so that we develop the understanding.
The Hon. Ken Wyatt, AM, MP, Assistant Minister for Health and Aged Care, was a keynote speaker at a recent RHDA Conference in Brisbane. He paid tribute to RHD patient Eddie Masina and spoke about the need to utilise old traditions of storytelling to spread the word amongst Indigenous communities.
Australia has one of the highest recorded rates of Rheumatic Heart Disease (RHD), despite the disease being almost eliminated in developed countries.
RHDAustralia, in association with the Heart Foundation and Queensland RHD Control Program, hosted the RHD Close the Gap Conference on 22 and 23 March, where over 200 Queensland healthcare professionals learnt about best practice approaches to the prevention, treatment and management of rheumatic fever and
RHD and heard the latest developments in RHD control in Australia.
Along with educating and informing healthcare workers, the Conference laid the groundwork for potential policy change and highlighted the importance of collaboration at a National and State level to address this issue.
RHD is a significant public health issue in Queensland; recent audits undertaken by Queensland Department of Health have uncovered a previously unknown burden of the disease in urban centres with approximately 380 new cases identified in the past 12 months. This is in addition to over 2,000 people already on the rheumatic heart disease register in Queensland and over 6,000 people on registers across the country.
Approximately 40% on these registers are under the age of 24 and at risk of premature death or disability.
Storytelling – finding new ways for stories to be shared
Many patients related their personal stories with rheumatic heart disease over the course of the conference, including Eddie Masina, a Djirbalngan man now living in Townsville. Eddie shared his journey, which started at age 5. He told how the disease has impacted his life, with five open-heart surgeries and a stroke. RHD has affected his family, his employment opportunities and his education. His story highlights the need for early detection and diagnosis by informed clinicians.
The Hon. Ken Wyatt, AM, MP, Assistant Minister for Health and Aged Care, was a keynote speaker at the Conference events. He paid tribute to Eddie Masina and spoke about the need to utilise old traditions of storytelling to spread the word amongst Indigenous communities.
Think ARF. Stop RHD.
“In the past our elder women and mothers taught the next generations of young women about those things that kept us healthy and strong; that enabled us for 40,000 years to live on this continent and grow in number and strength.
“We seem to have stopped that, which is a pity because I think if we start to go back to the sharing of knowledge in a way that is culturally appropriate and built around our matriarchal system, then I think we will see some changes emerge.”
The stories of those affected by RHD – patients, families, and communities – must be heard; they are a catalyst for action and they inspire and inform improved practice. Those in attendance at the Conference were motivated by Eddie Massina to do more, learn more, advocate more for those living with this disease, and to safeguard future young generations from the damage done by this devastating disease that is a marker of poverty and disadvantage.
There is a role for a broader group of champions from clinical, political and social sectors who can assist in raising the profile of RHD in multiple settings. Oral storytelling is at the heart of Aboriginal and Torres Strait culture – we should embrace this and work to find more ways for stories to be shared.
The World Heart Federation (WHF) has adopted the World Health Assembly’s goal of reducing premature non-communicable diseases mortality by 25% by 2025, developing roadmaps in priority areas. The WHF recognises that the political windows opened by governments’ coordinated efforts to meet the global goal represent a once-in-a-generation opportunity to influence policy makers and dramatically accelerate action around cardiovascular disease.
In Australia, we have many committed individuals taking action to raise awareness of ARF (Acute Rheumatic Fever) and RHD and to bring an end to this entirely preventable disease. However, there is widespread concern that in our wealthy, developed nation, more should be done to address Indigenous disadvantage and the resultant health conditions. RHDAustralia sincerely thanks the Hon. Ken Wyatt, AM, MP, (Assistant Minister for Health and Aged Care) and the Hon. Cameron Dick (Queensland Minister for Health) for being part of the RHD education and awareness raising events in Brisbane.
Senator Nigel Scullion recently noted that this year’s Closing the Gap report has highlighted there are still major challenges to eliminating Indigenous disadvantage, despite the progress that is being made. Senator
Fiona Nash recently announced a further $2.5 million for Indigenous Eye Health to ensure that Australia is able to eliminate trachoma by 2020 and close the gap in eye health between our Indigenous and non- Indigenous Australians. The RHD community applauds this and other initiatives to Close the Gap on Indigenous health outcomes, but there needs to be a more concerted effort from Governments at all levels to commit to eliminating the factors that contribute to all preventable, communicable diseases.
New opportunities, new knowledge and new technology make us optimistic that we can make a real difference. The vision is that by working collaboratively we can eliminate what is an entirely preventable condition.
RHDAustralia acknowledges the Federal Government’s commitment in the 2016-2017 Budget to extending funding to the National Partnership for the Rheumatic Fever Strategy until June 2017.
For further information please contact Catherine Halkon at RHDAustralia – Catherine.Halkon@menzies.edu.au
National Approach Needed for Heart Disease
Today’s burden of disease report, released by the Australian Institute of Health and Welfare – represents a major wake up call for all parties contesting the federal election, highlighting the huge impact a small number of risk factors have on the national disease burden.
The risk factors causing the most burden were tobacco use, high body mass, alcohol use, physical inactivity and high blood pressure, which are all major factors in heart disease. The report found that a third of the burden experienced by the population could be prevented by reducing the exposure to modifiable risk factors.
Heart Foundation Chief Medical Advisor Prof Garry Jennings
Although the largest fall in the fatal burden was seen in heart disease, the Heart Foundation Chief Medical Advisor Prof Garry Jennings said there was no room for complacency.
“We need to lift our effort to reduce the impact of these risk factors if we are to continue to tackle Australia’s number one killer heart disease,” Prof Jennings said.
“This major AIHW study demonstrates the need to invest more in addressing those critical risk factors of tobacco use, high body mass, alcohol use, physical inactivity and high blood pressure.”
Heart disease was one of the five chronic diseases that dominate in terms of total burden, with this quintet accounting for 69% in males and 62% in females of the total disease burden.
“Australia performs well when it comes to tobacco control – a credit to all major parties. But we are well behind the eight-ball when it comes to other major risk factors,” he said.
“We need to see the same effort invested in addressing physical inactivity, overweight/obesity and alcohol misuse.”
Prof Jennings added that Australia needed to see much greater attention paid to early detection, especially for those at risk of heart attack, stroke and other vascular conditions such as type 2 diabetes and kidney disease.
“We would also like to see more effective treatment for people with heart disease to address treatment gaps as well as more support for heart research as the disease burden evolves.
“Both the major parties are committed to a 12.5% annual increase in tobacco tax and we must keep the pedal to the metal to maintain that progress, especially with parts of the population with high smoking prevalence.”
Some of the $4.7bn raised over the next four years should be invested in prevention, making this a cost neutral measure for government.
Sadly, Australia is in the bottom third of OECD nations when it comes to investing in public health. Australian governments invest less than 2% of total health care expenditure in prevention, well behind class leaders New Zealand, on 7%, and Canada, on 5.9%.
In Australia in 2008-09 hospital costs attributed to heart disease was nearly $1.9b, with today’s estimate at $2.5b.
“When it comes to addressing the risk factors of heart disease, we know what will work is a comprehensive approach,” Prof Jennings said.
“These include national action plans for heart disease and stroke as well as physical activity, introducing an integrated health check, improving participation in cardiac rehabilitation programs, funding for cardiovascular research and directing focus of the new Medical Research Future Fund investment on major causes of the Australian disease burden.
“By adopting the recommended actions, we can prevent premature death, improve quality of life and reduce the immense economic burden heart disease places on the health system.”
The Heart Foundation urges all major parties to read this report and take decisive action.