The world wrote its plan to end rheumatic heart disease in Perth. Australia’s own plan is still waiting on most of its money

Rheumatic heart disease has all but vanished from wealthy suburbs. It has not vanished from Australia, and this weekend the world’s experts on the disease gathered in Perth to say so.

The second World Congress on Rheumatic Heart Disease, hosted by the Heart Foundation of Australia and the World Heart Federation, closed with the adoption of the Perth Declaration: a plan to eliminate acute rheumatic fever and rheumatic heart disease as a public health threat by 2040. The first congress was held in Abu Dhabi in 2023.

World Heart Federation head Jagat Narula put the problem plainly. “This is not a disease of poor countries, it is a disease of poor conditions,” he said.

What is rheumatic heart disease?

It begins with a Group A streptococcal infection of the throat or skin. Left untreated, the infection can trigger acute rheumatic fever, an immune reaction that can scar the valves of the heart. Repeated bouts cause lasting damage, and the result can be heart failure, stroke, surgery and early death.

It is the most common acquired heart disease in people under 25. Overcrowded housing, poor access to washing facilities and limited health care allow the infection to spread and go untreated.

Why does Australia still have it?

Almost 12,000 people in Australia live with rheumatic heart disease or have a history of acute rheumatic fever. Acute rheumatic fever is diagnosed in Aboriginal and Torres Strait Islander people at nearly 20 times the national rate, and First Nations people account for four in five cases of rheumatic heart disease.

Aunty Vicki Wade, a senior Noongar woman and associate professor at the Menzies School of Health Research who has spent more than two decades researching the disease, said it “typifies Australia’s failure” to care for one of the oldest living cultures in the world.

Professor Jonathan Carapetis of the University of Western Australia and The Kids Research Institute Australia has called it the most neglected disease globally for funding, relative to the death and disability it causes.

What does the declaration ask for?

Signatories commit to measurable targets, phased to 2040. The plan calls on governments to commit long-term funding, invest in healthy housing, water and environmental health, support Indigenous community-controlled organisations, secure the supply of antibiotics, back the development of a strep A vaccine, and register and follow every person diagnosed. It also gives priority to women and girls, who have higher rates of the disease than men and boys.

Heart Foundation chief scientific and medical officer Professor Derek Chew said the declaration defines a roadmap toward elimination.

Who pays for this?

Australia already has a plan of its own. The national Endgame Strategy aims to end rheumatic heart disease in Australia by 2031 and needs $689 million. Experts at the congress said only a small part of that has been committed.

The federal government said it is investing $95.8 million to prevent and treat the disease. That figure was announced in 2021 and is spread over six years. It also said it had made alternative medicines available on the Pharmaceutical Benefits Scheme during an ongoing shortage of benzathine penicillin, the long-acting injection used to stop repeat infections, and had worked with Aboriginal health services to supply medicines directly to patients.

Assistant Minister for Indigenous Health Rebecca White said preventing the disease also meant addressing the broader factors that affect people’s health.

Is it only an Australian problem?

No. Almost all of the world’s deaths from the disease are in low- and middle-income countries or among Indigenous people in wealthy ones. Across the Tasman, Māori are about 26 times more likely than other New Zealanders to be hospitalised with a first case of acute rheumatic fever, and between 1 and 3 per cent of people in the Pacific Islands are believed to have rheumatic heart disease, though data are limited.