Three times a year patients will line up in the stifling heat outside a small clinic in East Timor’s capital Dili just to see Warrnambool cardiologist Noel Bayley.
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Inside the clinic, Dr Bayley treats young patients on an examination table that for so many years was so hot you could just about fry an egg on it.
It’s a far cry from his rooms at St John of God Hospital in Warrnambool, but at least the Dili clinic he visits now has air-conditioning.
For the past 13 years, Dr Bayley has clocked up about 30 trips to East Timor where he has probably helped save the lives of 70 young people.
While there have been dozens of success stories, it is heartbreaking work because many die before they can get help.
“The kids, they die of heart failure because they don’t get any treatment. It’s very common to see young adults with severe valvular disease who die without intervention,” Dr Bayley said.
On his last trip there was a 10-year-old girl he just couldn’t save. “It’s terrible,” he said.
“I’ve had three people die on the waiting list waiting to come over for procedures. It’s really distressing.
“Australians have got no idea how lucky they are.
“Here we do valve replacements on 85, 90, 95-year-olds. In Timor, if you’re over about 45 nobody’s going to look at you because you’re considered too old to have anything done.”
Dr Bayley first went to East Timor in 2003 with the aim of doing some work in the third world, but it became obvious there was a huge amount of untreated cardiac disease.
His patients are mostly children, teenagers and young adults with rheumatic heart disease.
Rheumatic fever is a disease of the developing world associated with poor nutrition or sanitation and the only place you really see it in Australia is in remote parts of the Northern Territory among Aboriginal communities. “I’ve yet to see a case of it in Warrnambool,” Dr Bayley said.
In East Timor, recurrent skin infections from poor hygiene and nutrition create an immune reaction which progressively destroys the heart valves.
In the early days, Dr Bayley would go on solo trips and started arranging for patients to come to Melbourne for surgery.
He would pay their airfares out of his own pocket, using the “old friends” network to arrange surgery. “That was difficult, and if I got two or three cases a year done I was pretty pleased,” he said.
About six years ago, Fairfax newspapers ran an article on two young girls in East Timor who needed treatment in Australia.
“That led to the huge outpouring of support. Something like $20,000 came in the door in a few weeks. It was quite extraordinary,” he said.
Dr Bayley said the flood of support was unexpected and prompted the establishment of the East Timor Hearts Fund.
“That’s now become an incorporated charity with tax-deductible status and that’s been quite successful in fundraising, including enormous support from the Western District.
“Early on, the vast majority of our support was from the Western District, a lot of patients of mine, which was really touching.
“Pensioners would drop $20 bucks in or $50 bucks in, people for whom that was real money. That was incredibly generous.
“The support from Warrnambool and surrounding area has been really important. And that’s allowed us to expand what we do.
“We’re now doing 10 cases a year. We hope to double that this year.”
It has also meant they can broaden their work and start focusing on prevention of heart disease.
This year they hope to conduct a study of 1000 schoolchildren aged from six to 18 to try and determine how prevalent rheumatic heart disease is in East Timor.
He knows there are enormous numbers of young people with heart disease, but who knows how many there are in isolated parts of the country.
Every time he visits, Dr Bayley also travels to remote areas, which can sometimes be difficult.
“Transport in Timor can be a nightmare. It can take you two hours to do a 30km drive,” he said
Another major project the East Timor Hearts Fund is working on is treating patients with long-term monthly injections of penicillin prophylaxis.
If you’ve had one attack of Rheumatic fever, research has shown that penicillin treatment dramatically reduces the chances of having recurrent attacks – by as much as a half – and that means there is less chance of damaging the heart valve or needing an operation.
“We’re planning to dramatically increase the availability of penicillin prophylaxis over the next few years which will hopefully mean we’ll do ourselves out of a job,” he said.
Dr Bayley approached Pfizer Australia to get a good deal on the expensive medication, but said it was too difficult.
Instead, Pfizer offered to donate the drug - a move Dr Bayley described as “extraordinarily generous” and worth about $15,000 a year.
“They’re giving us enough penicillin for nothing to treat 100 patients a year for the next three years,” he said.
“If we can get good detection systems in place, and if we can get effective penicillin delivery in place, then the number of people we’re seeing at the end of the process with damaged hearts will be significantly reduced.”
The other major goal of the organisation is to get cardiac surgery done in East Timor, and positive discussions have already taken place with the government of Timor-Leste.
“But it’s going to take some time,” he said.
“It’s just an enormously complex procedure.”
While Dr Bayley started out making the trip on his own, these days he has a translator, a couple of clinical administrators who run a medical records system, and a second cardiologist.
“I’ve recruited two other cardiologists, one from Geelong and one from Sydney.”
His wife, Yve, also travels with him and works on improving water quality in East Timor.
He also works with Warrnambool businessman Andy Graham who runs the Water for East Timor project.
Dr Bayley’s role in East Timor is to do the diagnostic work and then make arrangements with Australian hospitals which include the Monash, Royal Melbourne and Barwon Health’s University Hospital in Geelong.
In the past month, two patients have received treatment in Australia and another will arrive soon.
He said the best thing about his work was returning to East Timor and seeing the patients that he’d treated.
“They all come along and say hello. It’s fabulous,” he said.
And as for those two young girls that attracted media attention and lead to the growth in Dr Bayley’s work in East Timor – they are now living normal lives.
“They were getting breathless climbing up on the examination couch when I first saw them,” he said.
“They had to stop going to school.
“They’ve both gone back to school and university.
“That’s pretty good.”