Sophie’s story: when acute rheumatic fever isn’t just common, it’s expected

Sep 17, 2019 | Stories

Dr Sophie Collins

Dr Sophie Collins

Dr Sophie Collins can clearly remember the sense of injustice she felt when she came across a patient with rheumatic heart disease (RHD) – a patient, who in many other ways, was just like her.

It was during her first year working as a doctor, and she was based in Central Australia, where she says, “acute rheumatic fever isn’t just common – it’s expected”.

“They were the same age as me, with a critically impaired heart function. They had already had two valve surgeries by the age of 24 and now needed a third,” Dr Collins says.

“I saw this patient numerous times and each time I was struck by the fact that we had been born in the same country, at the same time, but now I am healthy and they have end stage heart disease, completely as a result of preventable factors,” she says.

Rheumatic heart disease is a preventable disease that is usually only seen in low income countries, yet Australia has some of the highest rates in the world seen in our Aboriginal and Torres Strait Islander Communities.

Most at risk of developing the disease are young Aboriginal and Torres Strait Islander children aged 5-15, who are 55 times more likely to die of the disease than their non-Indigenous peers.

RHD starts with a Strep A infection of the skin or throat. When left untreated, the infection can lead to acute rheumatic fever (ARF), which can cause the permanent heart damage known as rheumatic heart disease. Risk factors for developing the disease include overcrowding, and a lack of access to health and hygiene infrastructure.

There is no cure for RHD, and at a minimum, people diagnosed with ARF must have an injection of long acting penicillin every 21 to 28 days for at least 10 years to stop their condition getting worse. Those with severe rheumatic heart disease must undergo surgery to have their heart valves repaired or replaced.

If current levels of funding for RHD prevention are not increased, it is predicted that a further 10,000 Aboriginal and Torres Strait Islander children will develop RHD by 2031 – suffering that Sophie says can, and should, be prevented.

“This is an urgent health issue, here, now, in 2019 Australia. It is actively affecting the hearts of children, it can be fatal, and it is completely preventable.

“Young kids who, in most other Australian settings, would be studying and playing sport carefree, instead have to present to a clinic every three or four weeks for a painful injection. And that’s only the prevention – let alone the impact on the patients I saw with severe heart problems,” she says.

In her time studying to be a doctor, Sophie says that rheumatic heart disease was only touched upon very briefly, and she was unaware what a pressing and serious health issue it is in some parts of Australia.

“In my memory, not a single patient I saw in five years of medical school in New South Wales had acute rheumatic fever or rheumatic heart disease; in Central Australia we would often see multiple patients in a day presenting for their injections” she says.

Sophie is sharing her story with END RHD to help raise awareness about a disease most Australians will have never heard of, and to implore policy makers to support urgent, community led action to end the disease.

“Urgent community-led, culturally safe action must be taken now on key factors such as housing and health promotion” she says.

“My ultimate hope is that, one day soon, RHD advocacy won’t be needed anymore because it will have been eliminated through the tireless work of community members and advocates.”

About the author
Dr Sophie Collins trained as a medical practitioner in regional New South Wales before electing to work in Central Australia for her first year as a doctor. Her interests in Aboriginal health, rural medicine, and health equity stem from this experience, and she is furthering her knowledge in these areas through study in a Master of Public Health. Sophie is currently working in an urban centre and hopes to take her skills and knowledge back to Central Australia in the near future, while continuing to act as an advocate for issues in rural and public health.

Join the Movement to END RHD

Together with governments, community groups and people like you, we're coming together to amplify the voices of those living with rheumatic heart disease, and formulating a plan to end it.