Forgotten but not gone: ‘Why does a third world disease still exist in Australia?’
‘Why does a third world disease still exist in Australia?’ was the question asked at our Q&A panel event held at Parliament House, Darwin, on the 20th October. The community event raised awareness and generated discussion around a disease that has been all but forgotten in metropolitan and mainstream Australia.
Bringing acute rheumatic fever and rheumatic heart disease back into the public light
Health professionals working in Northern Australia may have heard of acute rheumatic fever and rheumatic heart disease, they may know the pathology of the disease and infection, or even have treated people with these serious conditions. But, for most Australians, these are diseases relegated to turn of the century medical books as long forgotten illnesses that may resonate with those from the Silent and Baby Boomer Generations but probably not with most Gen Xs, Ys and Zs.
With this in mind, it’s not hard to see why we chose ‘Forgotten but not gone’ as the headline for our event. It is a statement, often used in relation to acute rheumatic fever (ARF) and rheumatic heart disease (RHD), about the social amnesia of wider Australia towards a disease that predominantly affects Indigenous children between 5-15 years of age. The title is a painful reminder of a life threatening, yet 100% preventable illness, currently affecting at least 6,000 people and their families around Australia. Definitely not gone.
130 people from all walks of life attended the event, where they heard from two brave families living with the disease and six engaging panel members; later to become seven thanks to the impromptu, and welcome addition of the Northern Territory Minister for Housing, Gerry McCarthy.
Charlie King, the panel facilitator, in opening the event captured its purpose when he said:
“…and despite being Indigenous, I didn’t know too much about rheumatic heart disease, and if I don’t, I wonder who does? I think people generally don’t know too much about this. The challenge is to take this (RHD knowledge) from this room tonight and give it to the broader community and make them aware of it, make government aware of it … we want everyone to be aware of it, because this is a silent killer that sneaks up at night, that sneaks up during the day and doesn’t go away and it’s 100% preventable. It’s not just good enough for health professionals to know about it, we all need to know about it.”
Questions from the audience went to the underlying causes of RHD. Paediatric cardiologist, Bo Remenyi had this to say about the importance of addressing overcrowding:
"Some of my patients, who have had open heart surgery …return to living in households with 18 people in 2 bedrooms. There’s no way, regardless of how hygienic you are that the germ isn’t going to spread like wildfire”
It was this discussion on housing that prompted Gerry McCarthy, the Northern Territory Minister for Housing, to join the panel. Minister McCarthy talked about the Northern Territory Government’s commitment to a $1billion housing plan over the next 10 years. The panel, responding to questions from audience members, spoke on a number of topics related to ARF and RHD including, the social and cultural determinants of health, how health and education departments can and should work together more effectively, how government and industry can improve public health responses, what good health literacy looks like, and how cultural considerations must be taken into account to ensure social justice and inequality are recognised and addressed.
The audience also heard from Edwin (Eddie) Masina who has shared his powerful story with many people over the years. Eddie spoke about his personal experience living with RHD since the age of five, and what it’s like to have survived five open heart surgeries and two strokes. Eddie spoke about how important it was for him to share his journey and reflected on a past encounter he had with a leading vaccine researcher.
“I did some work with the Heart Foundation and I had a chance to talk to Michael Batzloff, who is working on the vaccine for rheumatic fever… he said to me that he heard my story… and it really inspires him. When he told me that I was frozen… I didn’t know that my story could actually inspire him to work harder.”
Influential Indigenous health expert and advocate Vicki Wade led the discussion with Eddie and Marita Masina and Cherie and Kenya McAdam. The importance of storytelling in educating others was not lost on Vicki who explained:
“I think one of the most important things is listening to the stories… it’s good to see them grow too, grow to be advocates. Because you can say so many statistics but I think… we’re almost numb to statistics… that lived experience is really, really important. We need to listen more to the stories because they’re very powerful.”
Claire Boardman, Deputy Director RHDAustralia, closed the event with a call to action. Quoting Michael Marmot, President of the World Medical Association and advocate for health equity, she called on the audience ‘make every contact count' so that rheumatic heart disease is no longer a forgotten disease.
Do you have a rheumatic heart disease story to share?
Those in attendance were motivated by Eddie, Marita, Cherie and Kenya to do more, learn more and advocate more for those living with this disease, and to safeguard future generations from the damage done by this devastating disease, which is a marker of poverty and disadvantage.
Oral storytelling is at the heart of Aboriginal and Torres Strait culture. The stories of those affected by rheumatic heart disease – patients, families, communities – must be heard, they are a catalyst for action and inspire and inform improved practice. If you have or know someone with a story to share you can contact RHDAustralia at email@example.com
Rhuematic Heart Disease – an important infection among the young in aboriginal communities – Central Australian Aboriginal Media Association
RHDAustralia sincerely thanks all those who attended, presented and supported the events
We would like to thank each of our panellists: Charlie King, legendary ABC sports journalist and anti-violence activist; Vicki Wade, leading Indigenous health expert and advocate; Mark James Frederick Munnich, community legal educator and Indigenous advocate; Adam El-Gamel, New Zealand heart surgeon and international rheumatic heart disease expert; Marion Scrymgour, Australia's first Indigenous female Cabinet Minister; and Professor Bart Currie, infectious disease physician and Director, RHDAustralia.
RHDAustralia would like to extend a very special thanks to Eddie Masina and his wife Marita, and to Cherie McAdam and her daughter Kenya, for sharing their stories. The future is brighter because of people like you. Thank you again!
Thank you to Richard Fejo Senior for the warm and beautiful Welcome to Country and thanks to the Honourable Gerry McCarthy and the Honourable Lauren Moss for taking time out of their very busy schedule to come, listen and participate in what was a very lively and challenging evening.
And finally thank you to our sponsors NT Airport Corporation, KMPG and Airnorth.