Maningrida continues its fight against rheumatic heart disease

A blitz to find active cases of rheumatic heart disease (RHD) has saved several lives in the remote Northern Territory community of Maningrida.

Maningrida in Arnhem Land is the site of the ground-breaking, active-case finding blitz by doctors Boglarka (Bo) Remenyi and Josh Francis who have identified the community as having some of the highest rates of RHD and acute rheumatic fever (ARF) in the world.

Maningrida’s community-led approach to prevent and eliminate RHD has saved children’s lives, reduced suffering, and inspired other Top End communities to seek similar interventions – and to seek immediate action now so that they can save their children from a lifetime of serious disease and premature death.

RHD has been virtually eliminated from most Australian cities, but it is devasting rural and remote Aboriginal and Torres Strait Islander communities and affects children as young as two.

Bo and Josh focussed on Maningrida because the community came together and committed to take action and save their children’s lives. The project team trained four local Aboriginal healthcare workers from Maningrida, along with other healthcare workers from the Northern Territory and Timor-Leste, to do heart scans using portable hand-held devices which can detect RHD.

“Finding cases of RHD as early as possible can prevent children from having to undergo intrusive open heart surgery and stay on medication for the rest of their lives, all because of a preventable diseas,”, said Bo, the only paediatric cardiologist in the Northern Territory and co-lead of the active case finding project.

“Aboriginal Health Workers are critical to the project and speak traditional languages, which helps children feel at ease during screening.”

The project was completed in two phases, the first in March 2018 when the team of Aboriginal health workers, nurses and doctors checked the hearts of more than 450 children in Maningrida. At the request of the community, the second screening happened in November 2018, reaching another 170 children who live in remote homelands outside of Maningrida.

“The community was very pleased that with the first phase we were able to perform heart scans on their children and detect these serious cases so treatment can begin immediately”, said Bo.

“However, there were also concerns for the children who live outside of Maningrida and on homelands, who hadn’t yet had a scan. Community members urged us to hold a second screening that would reach more children.”

During the first wave of active case finding, 20 children were found to have rheumatic heart disease, and two of the children with severe cases needed immediate open-heart surgery to repair damage from the disease. The second screening picked up a further 12 cases of RHD, including one child who needed emergency, open-heart surgery.

Both screenings were accompanied by comprehensive community led RHD prevention education in traditional languages, an extra effort that has changed the way the community thinks about RHD and has helped children self-identify sore throats and skin sores for early treatment.

“This is a disease of poverty. It should be educated in schools, to the families, to everybody”, said Mayor Matthew Ryan of West Arnhem Regional Council. “It is a successful community-led program that we believe can help eliminate RHD once and for all in our communities.”

Today all children who were treated for RHD are doing well; they are taking their necessary injections and keeping healthy. All three children who needed urgent surgery have returned home from hospital after successful surgeries.

“This effort had a tremendously positive impact in Maningrida. We found that at least five per cent of children in Maningrida had RHD, and nearly two-thirds of these had not been diagnosed before,” said Josh.

“It has inspired other surrounding communities to request active case finding medical visits and more traditional-language education at school so children and their parents can learn how to help prevent RHD from a very early age.”