What disease starts as a sore throat in children and ends with open heart surgery, heart failure, permanent disability, stroke and premature death?
Clue: It kills 1000 people every day, affects 15 million children and young people and is 100% preventable…
Take Heart is a global media communications initiative designed to put Rheumatic Heart Disease (RHD) on the global media and public health agendas. The project will be released in 4 parts:
First Stop – Australasia
Second Stop – Asia & Middle East
Third Stop – Africa
Fourth Stop – Latin America
Take Heart will be distributed across a variety of platforms including public screenings, on television, as a series of short films, online, social media, video-on-demand, DVD, photography exhibitions and a smart phone app.
RHD is preventable, but it currently affects over 15 million young people worldwide.
PART ONE – AUSTRALASIA
A BIG SUBJECT
Take Heart is a one-hour television special designed to lift the lid on Rheumatic Heart Disease, an entirely preventable disease that threatens the lives of 2% of all Indigenous Australians (Dr Bo Remenyi, Menzies School for Health Research).
Today, thousands of indigenous Australian children are at risk of contracting Acute Rheumatic Fever (ARF) from a common sore throat (Strep Throat) or from the transmission of Strep A bacterium through infectious skin sore (Scabies). If these vulnerable children are not quickly identified as being symptomatic (with fever or joint pain) and treated with penicillin, their body’s autoimmune response may start mistakenly attacking their heart valves in an attempt to rid the body of its fever. Repeated exposure to ARF leads to life-threatening Rheumatic Heart Disease (RHD) which ends with expensive and traumatic open heart surgery as well as a dramatically increased risk of permanent disability, stroke, heart failure and premature death.
A POWERFUL STORY
Take Heart reveals the incredible true-life stories of young people living with RHD, their families and health workers caring for them. The stakes are high for these kids, RHD is life-threatening and they must comply to strict medication schedules to stay alive. Regular health checks, restricted activities and frequent hospital admissions are commonplace and they rely on the support of their family, friends and community health workers to keep them on track. This is not easy as most young people living with RHD are from poor, disadvantaged and often remote communities. Perhaps this situation is made worse knowing that RHD is 100% preventable.
A FIRST-HAND ACCOUNT
Take Heart follows the stories of four Indigenous Australian youngsters over two years. Their voices are supported by their Hungarian-Australian doctor, Darwin-based paediatric cardiologist Dr Bo Remenyi as well as patients and doctors from New Zealand. Told through the eyes of Liddywoo (17), Carlissa (16), Trenton (8) and Brooklyn (7) Take Heart seeks to get to the heart of the complex social, environmental and health factors placing these young Australasians at such high risk.
ABOUT CLOSING THE GAP
We chart the trajectory of the disease through the narrative journeys of the participants, meeting the adorable Brooklyn (7) in the children’s ward of the Royal Darwin Hospital. Despite the best efforts of her ‘clown doctors’, Brooklyn’s eyes betray her sadness. She’s now been bed-bound for over a month, misses her siblings terribly and despises the frequent needles administered to keep her heart safe from RHD. When Dr Bo Remenyi speaks to Brooklyn’s father James, an open heart surgery patient himself, we realise that the family is worried sick about Brooklyn but knows next-to-nothing about the disease that will shortly see her transferred to the Royal Children’s Hospital in Melbourne for major open heart surgery.
In the island paradise of Tiwi Islands, we meet 8 year-old Trenton. A natural born hunter, Trenton fills his days with activities in keeping with his traditional lifestyle. Through Trenton’s story we discover the common causes of ARF – transmission of ‘Strep’ amongst children through sore throats and skin sores in the community due to overcrowding, close sleeping arrangements, sharing towels and most critically, the absence of early referrals to the health clinic when children are symptomatic. “Education is the key to beating this disease,” affirms Dr Bo Remenyi.
ABOUT LIFE & DEATH
In her traditional homelands of Werenben, some 60 kilometres from Katherine, Carlissa (16) reflects on the devastating impact RHD has had on her immediate family and the Jawoyn people. “Well, really it runs through the family. My uncle, he died from Rheumatic Heart Disease, and my other uncle died from it too and my mum, and my cousin sister, the one took me to Melbourne. I think it runs through the family,” explains Carlissa. “A little bug. A little Strep. Well it could be anywhere. Cos kids and people like to walk around. Well, it could get like onto your body then it could go into open wounds. Maybe it got into my body and then I felt sick, like sore joints and sore throat and that’s how it caused Rheumatic Heart Disease.”
Swimming at the local watering hole of Edith Falls Carlissa confides, “I really like school. I wanted to be a nurse but now I’m thinking a ranger might be better. Look after the animals here and catch the salties [saltwater crocodiles].” Carlissa has had four open heart surgeries, her last involving the insertion of a mechanical heart valve which now clicks “like a grasshopper – a little ticking sound which makes me know it’s working well.” But she’s not completely in the clear, she must now comply to a strict schedule of medications including a daily dose of the blood-thinning Warfarin and monthly Bicillin needles. “It’s unfair really. Cos sometimes I’m not allowed to play sports or do like some contact sports. It’s really hard having Rheumatic Heart Disease.” Due to the remoteness of her homelands to the local medical clinic in Katherine, her age and complex social factors, Carlissa’s compliance to these life-saving medicines has been dangerously low despite her best efforts. “I don’t want to take a stroke cos I’m too young to die.”
In Melbourne, we meet Liddywoo (17) the day before his third open heart surgery. ‘Liddy’ is coughing relentlessly and wheezing of each breath. His surgeon, Dr Yves Dudekem, reports that the mechanical valve replacement procedure is urgent and due to the advanced nature of his Rheumatic Heart Disease he is at real risk of dying in theatre. “His heart could stop working any moment.”
Our camera accompanies Liddy through his marathon 9 hour open heart surgery, which he thankfully survives.
Over the course of the following two years we delve deeper into the lives of these young Australians. In their own unique ways, they show us their worlds and share their intimate insights which help us understand the complex nature of preventing a disease with so many social determinants.
We witness moments of great joy – Liddy tearing around his home community in urban Darwin on a four-wheeler adorned with his beloved Essendon football guernsey, Trenton leading us on a turtle hunt in Milikapiti, Brooklyn and ‘her mob’ performing a choreographed dance routine in their lounge room, Carlissa and her family hosting an outback Christmas lunch beside the Wereben school house.
In New Zealand, we find a world-leading Rheumatic Fever prevention program rolling-out, bringing new knowledge and innovation to the region. Rhutai, a 19 year-old Maori woman with a history of ARF and patient of Dr Lance O’Sullivan, the 2014 New Zealander of the Year, shares her story.
Through the eyes of these young people living with RHD, we see the complexities involved in balancing traditional lifestyles with the demands of the modern medical system. Consistent with their cultural norms, the featured families use verbal communication sparingly. However they have a great deal to share which us. And when they do speak, it’s often with stories, lore and questions that cut through to the very heart of the matter.
“Why does this only affect us (Indigenous Australians) in the top end?” demands Brooklyn’s father James. “Is it the climate of something?” Well, it turns out that climate has nothing to do with it. In fact, rates of RHD were high all over Southern Australasia in the early 20th Century. Famously, former Australian Prime Minister Kevin Rudd had RHD and subsequent surgical interventions relating to the disease. But as living conditions and medical services ‘down south’ improved, rates of RHD were reduced to next to nothing.
The insight here is that because its prevention requires a combination of social services working well together, the prevalence of RHD is actually measure of a society. In New Zealand, it’s considered to be one of ten targets of Better Public Service. Nonetheless, throughout the region, we find a pattern of disadvantaged populations being most at-risk. The prevalence of RHD in Australia’s Indigenous population and New Zealand’s Maori and Pacific Islander populations are amongst the highest in the world. As a result, the answers to the pertinent questions raised by these families about lifestyle choices, living conditions, education, overcrowding and access to health services guides the audience to important new insights related to ‘Closing The Gap’.
ABOUT MAKING A DIFFERENCE
Currently the story of RHD is highly medicalized, often told only in written English and sometimes accompanied by illustrations. This critically important story is currently being lost in translation or drowned in a sea of competing public health messages targeted at Indigenous communities.
The opportunity presented by Take Heart is to harness the power of moving pictures, to breathe life into this story by making it REAL through the real stories of young people and their families living with RHD. We already have strong anecdotal evidence that this approach is likely to be effective in making a
Take Heart will provide a more memorable and effective way of communicating the story of RHD then anything that currently exists. This improved understanding of the disease and how it can be prevented seeks to both reduce the incidence of RHD.
FIND OUT MORE
Find out more & sign-up for updates at www.TakeHeart.tv/signup
Contact Producer: Mike Hill firstname.lastname@example.org
THANKS TO OUR SPONSORS
Presenting Sponsor: Aspen Foundation
Supporting Sponsors: Snow Foundation, National Heart Foundation of Australia, Cardiac Society of Australia and New Zealand, New Zealand Ministry of Health, Cure Kids, World Heart Federation, NT Cardiac, RHD Australia,.
Production Company: Moonshine Movies.