Timor-Leste is in the grip of a rheumatic heart disease crisis, with the pandemic making it impossible for Australian cardiologists to provide care in the country.
Advanced medical treatment has always been hard to come by in the island nation, which was famously home to just 20 doctors after declaring independence from Indonesia in 1999.
But cardiologists from the East Timor Hearts Fund say the situation is as bad now as at any time since the group began working there more than a decade ago.
“It’s not an exaggeration to call it a crisis,” says Dr Elizabeth Paratz, a cardiologist at Baker Heart and Diabetes Institute and medical director at the charity.
She says border closures have forced the group’s Australian volunteers to spend 18 months on the sidelines – away from patients who need high intensity care.
The pandemic has also shut the door on any patients entering Australia for surgery.
“Multiple young people have died and disease is worsening in others while we wait,” she says.
“Of course that is just the people we know about so it’s the tip of the iceberg,”
In a research letter published in the MJA on Monday, Dr Paratz and her colleagues laid out the grim figures.
“On 1 March 2020, 35 Timorese people were waiting for cardiac procedures in Australia, including 26 with rheumatic heart disease and nine with congenital cardiac disease,” they wrote.
“By 31 August 2021, three people had died, and 13 had been admitted to hospital with decompensated heart failure.”
The picture didn’t improve for those who could be reached for online telehealth appointments either, with the median New York Heart Association score declining from II (mild limitation of physical activity) to III (marked limitation).
“Of 13 people who could not be contacted for follow-up, three had died suddenly; the status of ten whose phone numbers were no longer current was unknown.”
Dr Paratz, who had been travelling to Timor-Leste up to three times per year before the pandemic, said it already had one of the highest rates of rheumatic heart disease in the world.
The other issue was the number of young people with congenital cardiac disease that not been diagnosed or treated in infancy and youth and were now dealing with heart failure.
“The average age of our patients is 29 so it’s very different from Australian cardiology,” she said.
“Many of the patients we see are people who would be inpatients in a hospital here, identified as the most critical cases and awaiting urgent surgery.”
“In Timor they are waiting for several months as outpatients, waiting on interventions in Australia funded by donors and with doctors working pro-bono.”
For those used to Australian practice, the adjustments to working in tiny rural clinics and Timor-Leste’s basic hospitals were significant, Dr Paratz added.
Pathology remained seriously limited, making regular INR monitoring for patients on warfarin a real challenge.
“Even getting timely blood tests or chest x-rays for preoperative workups has always taken a lot of thought and planning,” she said.
“And we obviously don’t have routine access to CT scanners and things like that.”
Nevertheless, the group had provided almost 100 operations over the past 10 years – often with dramatic results.
“While it’s a much younger and sicker cohort here, they are often really amenable to intervention,” Dr Paratz said.
“We’ve had really good long term outcomes.”
Happily, the first volunteers since the start of the pandemic touched down in the capital Dili this month, although a massive game of catch up awaited them.
Plans were also underway to begin transferring the first patients in two years back to Australia for surgery.
“We are hopeful that things will get back on track soon,” she said.
“These patients are often the main breadwinners for their families so any disability or comorbidity is just devastating.
“So the impact of treating them goes beyond the medical or emotional, it’s a real social benefit.”