A program to find and treat children in East Timor with rheumatic heart disease is reducing the rates of heart failure and preventable deaths, researchers say.
For the first time, Australian doctors are working with East Timorese health workers to screen and treat children and young people with the illness, using methods similar to those used in Australia.
After six months of the program, 1,500 children at schools in the capital Dili and the regional district of Emera were tested. About 50 were found to have undiagnosed rheumatic heart disease (RHD).
It is the first time this type of data has been collected in East Timor, and researchers now believe there could be up to 10,000 young people with the illness.
"I feel like we have just reached the tip of the iceberg and there's a whole lot more rheumatic heart disease in Timor Leste than what we've been able to detect with a moderately sized screening program," said Josh Francis from the Menzies School of Health Research.
"From my point of view, there's plenty more to do."
RHD child mortality rate unknown
A severe case of RHD can result in heart failure and requires life-saving cardiac surgery, but only a select few East Timorese patients can be flown to Australia for the operation.
"We were seeing very severe cases, very much at the pointy end, children who would come into hospital with severe heart failure from severe rheumatic heart disease, and with no real options for cardiac surgery," Dr Francis said.
"Tragically we just see many children who die."
The number of deaths from the disease in East Timor are not known because the illness was undocumented until now.
"You just see this constant flow of children, young adults with severe rheumatic heart disease," Dr Francis said.
"So I can tell anecdotally of the stories of the children that I've looked after who have died of a result, but the extent of how many die, we really don't know."
Study underway to find cases, prevent severe RHD
A team of health workers supported by Menzies, East Timor's National Hospital, the Bairo Pite Clinic and the East Timor Hearts Fund are conducting a prevalence study, in order to develop a strategy to deal with those who have severe RHD.
The strategy would also seek to prevent severe RHD in those with mild or moderate levels of the illness by treating patients monthly with penicillin injections to stop the progression of the disease.
Health workers are monitoring children who have been identified as having mild or moderate RHD and penicillin is being administered at schools in the villages of Dili and the Emera district.
If the children do not receive the monthly treatment they will have more episodes of acute rheumatic fever and go on to develop more severe RHD.
"They're the ones who... end up with heart failure and possibly even death, and to think that you can stop that simply by giving by penicillin injections, it almost sounds too easy," Dr Francis said.
"It really does have the potential to save lives of children whose hearts can be kept healthy."
Dr Francis said a big part of the strategy was to demystify the condition and explain the importance of the painful monthly injections, a task undertaken by local health worker Anary Dos Santos.
"[The success so far] is a real testament to Anary and the way he's communicated with these families and help them understand this is something that can make a real difference to the lives of their children," Dr Francis said.
Mr Dos Santos came to Darwin to learn about the methods used in Australia to track patients and monitor their treatments.
He has since set up East Timor's first register to follow patients and collect data, and said the response from the patients was positive.
"If you're close with them and build up your relationship with them then they'll feel more comfortable with you, even the painful, but they feel 'alright because it's important for my health'," Mr Dos Santos said.
"People are saying, 'before I've got this but now I feel a little bit better,, I can run here and there', and I say, 'that's great, it means it [the penicillin] works'."
Dr Francis said he hoped to expand the program to identify more cases and get them on effective prevention.