[caption id="attachment_2217" align="aligncenter" width="1238"] The Snow Foundation plays a very active role in the campaign to end Rheumatic Heart Disease by seed funding community-led solutions, education and advocacy and working with many partners.[/caption]
Australia has some of the highest rates of rheumatic heart disease (RHD) in the world, even though this preventable disease was virtually eradicated in most of the country decades ago. Today, this complication from Strep A is found in Indigenous and remote Australian communities, and in children as young as two. RHD begins as a sore throat or skin sore from Strep A, that can damage the heart if undiagnosed and untreated.
Without a vaccine, people with RHD must stay on a strict and painful, penicillin injection schedule every month for at least ten years. Missing one dose can mean reinfection and further heart damage. Severe heart damage from RHD requires open-heart surgery and a lifetime of additional medication. Cases left untreated will become fatal. Two young Australians die of RHD each week.
In 2015, The Snow Foundation joined the fight to end RHD by funding documentary filmmakers Mike Hill and Sue Collins and their documentary “Take Heart: The Quest to Rid Australasia of Rheumatic Heart Disease.” It provides a first-hand account of RHD treatment and prevention in remote communities across Australia and New Zealand. The film grew into action toolkits, sponsored by BUPA, that included additional short films, apps, and educational materials to help children and their families learn about RHD prevention and treatment. This is available to communities, schools and clinics.
Take Heart premiered in 2016 and was screened around Australia. It was broadcast on SBS screened at Parliament House in an event sponsored by The Snow Foundation and the Aspen Foundation.
The Snow Foundation also began our continuing support of research to develop a Strep A vaccine, headed by Professor Michael Good AO, a National Health and Medical Research Council Senior Principal Fellow at Griffith University.
In 2017, two film screenings were held at Parliament House hosted by The Snow Foundation and Aspen Foundation, one with the Parliamentary Friends of the Close the Gap Campaign where Penny Yibaruk, a 12-year-old with Rheumatic Heart Disease from Onepeli in the Northern Territory spoke about the challenges of the disease and its treatment. She must take regular does of penicillin to stay alive and says, “I just want to be free from this disease.” Dr Boglarka Remenyi, 2018 Northern Territory Australian of the Year and the only paediatric cardiologist in the Northern Territory also spoke to the group about the depth of the problem across the Northern Territory and in remote communities.
The Snow Foundation supports both Dr Bo and Dr Josh Francis, an infectious disease specialist, as they tirelessly volunteer to lead active-case finding in Australian communities with high rates of RHD. Part of their case-finding is teaching Aboriginal health workers to scan the hearts of local children with hand-held echo cardio devices, for immediate detection and better communication with the children who are at greatest risk.
Between March 2017 and November 2018, there was great success in Maningrida, NT, the community with the highest rates of Rheumatic Heart Disease in the world. The community embraced traditional language education and active case finding to stop the spread of RHD. Community-led, active-case-finding using hand-held equipment at the local school and in the homelands screened 620 children and found 32 cases of RHD. Three children needed emergency open-heart surgery, have returned home and have been successfully following their strict regimen of injections. The community also fully embraced traditional language education to help children self-identify sore throats and skin sores for treatment and teach parents about RHD, the risk factors and prevention techniques.
It’s been the greatest community collaboration I’ve ever experienced,” said Joseph Diddo, Traditional Owner, Maningrida.
2018 was also the beginning of nationwide momentum to end Rheumatic Heart Disease in Australia. In May, The World Health Assembly passed a resolution requiring member countries, like Australia, to prevent and eliminate RHD.
In October 2018, The Snow Foundation hosted a land-mark ‘End RHD’ breakfast at Parliament House together with co-host END RHD, an allegiance of organisations working to address the disease, where both political parties committed to ending RHD. Pat Turner, NACCHO CEO, said, “Our shared vision is that no child born in Australia from this day forward should die of RHD. We are here – now – to ask for your help in bringing that vision to life. …RHD sticks out. It’s the greatest cause of cardiovascular inequality for Aboriginal and Torres Strait Islander people in this country… It exemplifies the gaps in prevention in the health system and in outcomes.” The Brown family travelled from Maningrida with their three boys who all have rheumatic heart disease that requires monthly injections to prevent deadly complications. As a family and as spokespeople for the families battling RHD, they were able to tell their story of coping with Rheumatic Heart Disease in a remote part of Australia. At the end of the event, both political parties confirmed their commitment to eliminate RHD.
Finally, in December, at the National Conference of the Australian Labor Party, a resolution was passed supporting Indigenous leadership, governance and action to prevent and aim to eliminate RHD. They called for prioritising community-led action with a primary focus on Aboriginal and Torres Strait Islander communities with the highest rates of Strep A infection, ARF and RHD.
In 2019, the movement to end Rheumatic Heart Disease continued to grow with even more political success. In February, the Hon. Ken Wyatt AM MP announced the Morrison Government is investing $35 million over 3 years in the development of a Strep A vaccine. National Aboriginal Community Controlled Health Organisation (NACCHO) CEO Ms Pat Turner AM, said the ACCH sector welcomed this funding as a part of the work to end RHD: “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.”
Just a few weeks later, in April, Opposition Leader Bill Shorten committed to $33 million in funding for community-led action on rheumatic heart disease (RHD) over three years. Dr Bo Reményi called it a “significant and magnificent start” to end a disease which is crippling and killing Australian children. It’s also an opportunity for other parties to match this commitment to end RHD. RHD Australia Senior Cultural Advisor and The Snow Foundation partner, Vicki Wade, also welcomed the announcement of additional funding to prevent and eliminate RHD. “RHD is the best marker for disadvantage between communities, and if we can prevent RHD, we can prevent a lot of other diseases. The social determinants of ARF and RHD are common with many other health problems in Aboriginal and Torres Strait Islander communities, including kidney, skin, eye, ear and respiratory diseases,” Ms Wade said. “Our mob want to see action and change now. We need our communities to take charge now to prevent this unacceptable disease. Change needs to come from our people, our choices, our voices,” she said.