New study finds more than half of 1,800 nationwide diagnoses in four years to 2017 were in the top end

This article is more than 11 months old

This article is more than 11 months old

The rising rate of rheumatic heart disease in the Northern Territory is a “bloody health emergency”, the head of the top end’s biggest Aboriginal health service says.

The number and rate of diagnoses of acute rheumatic heart fever doubled inthe four years to 2017, according to a study released on Friday by the Australian Institute of Health and Welfare.

Acute rheumatic fever and rheumatic heart disease are “diseases that were eradicated elsewhere at the turn of the century”, said Olga Havnen, chief executive of the Danila Dilba Aboriginal health service in Darwin.

“These are serious health conditions that could be prevented,” she said. “The way you prevent them is by addressing living conditions and housing.

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“It’s not surprising that the rate is rising because if you have a look at rates of overcrowding in the NT, it has been persistently higher than any other place.

“We have rates up here of up to 35 people per house, for a three-bedroom home, so it’s not surprising that people have [rheumatic heart disease].”

Rheumatic heart disease is a permanent form of heart damage, caused by exposure to strep A infection and usually begins with a sore throat or skin infection. If not treated with antibiotics, some young people will go on to develop acute rheumatic fever and then rheumatic heart disease.

Those most at risk of developing the disease are young Indigenous Australians aged 5 to 15. The average life expectancy of an Indigenous person diagnosed with it is 40.

In the four years to 2017 there were more than 1,800 diagnoses of acute rheumatic fever recorded, and just over 1,700 of those were of Aboriginal people.

Nine in 10 (89%) of those were children – predominantly girls – aged between and 5 and 14, the study found.

More than half of all cases were in the Northern Territory.

Havnen said the latest report reflected a greater awareness of acute rheumatic fever and rheumatic heart disease and a greater effort to screen for it.

“The data is reflecting better screening and hopefully better treatment, but nonetheless it’s shocking and it’s probably one of best examples of why we should describe what we have here in NT as a bloody health emergency,” she said.

Australia ought to be ashamed of the fact that people live in such appalling conditions. It would be far better for governments to invest properly in housing. Not doing so is not only costing people’s health, but their lives.

END RHD, the peak organisation representing researchers and medical organisations working in the field, said the report was not evidence the burden of disease was increasing.

“The data reflects that we are finding and identifying it better, and recording it better than we used to,” said Katharine Noonan, END RHD’s head of strategy.

“But these numbers show us we have got a lot of work to do in primary health care delivery as well as treatment.

“The most important thing about the data is what do we do with it. Looking at these numbers, it probably isn’t anything that is surprising to researchers, but it does really cement the need for a substantial investment in reducing overcrowding and the inequitable burden of the disease.”

Havnen said Danila Dilba health service has 123 clients who receive treatment for rheumatic heart disease, mostly young people. They require monthly penicillin injections for 10 years. Those who have already had heart surgery because of the disease will need the monthly injections for life.

Compliance with the monthly injection regime can be hard to maintain, Havnen said.

“These diseases are diseases of poverty,” she said. “So while they need a medical response, they also need a response that deals with the underlying problems like severe overcrowding, and the fact that the cost of food out bush has increased over the last four years.

“The two main things governments can do are improve housing and work to ensure people in remote areas have access to food that’s the same price as people living in towns.”

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In 2016 Guardian Australia reported on the alarmingly high numbers of young children undergoing open heart surgery after recurrent bouts of acute rheumatic fever.

This year the World Health Organisation declared that eradicating rheumatic heart disease is a global priority. In February the federal government allocated $35m to develop a strep A vaccine, described by researchers at the time as a game-changer.

Nationally there are 4,255 people living with rheumatic heart disease; 87% of them are Indigenous.