The head of the National Heart Foundation has declared it's time to get "angry" about Western Australia's unacceptable rates of rheumatic heart disease affecting Aboriginal children, as Perth prepares to host a major international medical conference next year.
Global Spotlight on WA's RHD Crisis
Perth has been chosen to host the second World Congress on Rheumatic Heart Disease in November, highlighting WA's position as a global leader in research and prevention efforts. However, National Heart Foundation chief executive David Lloyd said this international recognition comes with sobering responsibility.
While WA should be proud of its ongoing work to eliminate RHD, Mr Lloyd expressed deep concern that the disease continues to cause serious illness and death in remote Aboriginal communities. The condition has been virtually eliminated in urban Australia but remains disproportionately high among Indigenous populations.
The Devastating Reality of RHD
Rheumatic heart disease results from damage to heart valves caused by acute rheumatic fever, which stems from untreated streptococcal A infections. More than 90 percent of RHD cases occur in Aboriginal people, predominantly children aged between five and 14 years.
"We do fabulous research, and beautiful community projects on rheumatic heart disease, and it is known around the world," Mr Lloyd acknowledged. "But the eyes of the world will be upon us here... they're going to look at us and say, 'why do you still have rates of 10 percent in remote communities? Why do you still have kids who are having heart attacks in their late teens because their valves have been destroyed by rheumatic heart disease?'"
Mr Lloyd warned that Australia had "learned to live with" the high rates of the disease and called for renewed outrage. "There is a place for controlled, thoughtful anger, and I use that word with great caution... but I think we have to get angry about this again," he emphasized.
Personal Story Highlights Ongoing Struggle
The human impact of RHD is vividly illustrated by nine-year-old Miyoko Mongoo from Karratha, who was diagnosed with the disease two years ago during a pilot program conducting echo scans in her hometown. The young girl, whose family comes from Nyul Nyul country in the Dampier Peninsula, showed no symptoms but had previously been treated for skin sores linked to Strep A.
Miyoko now receives monthly injections of a long-acting antibiotic to protect against worsening heart valve damage and prevent further episodes of rheumatic fever. Her mother, Sharon Lockyer, revealed that her daughter will need these injections until she's at least 21 years old.
"She copes well with it, the first time she had the injections she was nervous but she's tough and really good now," Ms Lockyer said. She expressed hope that ongoing research would lead to the disease's elimination, adding: "It's sad that our people are still suffering, living in the conditions they're living in, and all the challenges and barriers we face."
Progress and Challenges in RHD Fight
Perth's Kids Institute remains at the forefront of RHD treatment and research, including the groundbreaking "Holy Grail" project to develop a Strep A vaccine led by Professor Jonathan Carapetis. Professor Carapetis noted that ongoing work to reduce early deaths and suffering happens "in partnership with First Nations communities that bear the brunt of these diseases in our country."
Western Australia still faces significant challenges, with more than 2000 people on the rheumatic heart disease register. "We are still seeing new cases of acute rheumatic fever that leads to rheumatic heart disease in children, and that almost all of those are Aboriginal children," Professor Carapetis confirmed.
The conference announcement follows the State Government's allocation of $25 million over five years to improve research, prevention, diagnosis and treatment of rheumatic heart disease. Minister for Medical Research Stephen Dawson said hosting the congress "further cements WA's position as a leader in medical research and innovation that has real-world benefits."
RHD has been eradicated in many parts of the world but continues to devastate vulnerable communities in sub-Saharan Africa, the Middle East, South and South-East Asia and the Western Pacific. Globally, an estimated 40 million people live with RHD, which claims more than 300,000 lives annually.
Mr Lloyd expressed optimism that the combined efforts of government, philanthropy and medical research would lead to significant progress. "Rheumatic fever and heart disease are the result of disadvantage. We know how to eradicate it — we just need support to make it happen," he stated.
