How political neglect lets an epidemic of blindness go unchecked

HUGH Taylor's war on trachoma began 35 years ago. As a young doctor, he travelled the red dirt roads of the Tanami Desert in a beat-up Land Rover with the late Fred Hollows dispensing medical help to an estimated 10,000 Aboriginal men, women and children with the catastrophic eye disease.

"We slept in a swag usually at the side of the road, washed each day out of jerrycans. Conditions were tough, temperatures in the 40s and no airconditioning," he told Fairfax Media. "Rates of trachoma then were between 40 and 50 per cent. In the worst communities they were 75 per cent.

"Almost all the kids had snotty noses, dirty faces and perforated eardrums with pus running from infections. Alcohol was not the problem then that it became later. We treated people with sulphur-based antibiotics that had to be administered twice a day for 21 days, which created big logistical problems."

Families endured harsh summers and freezing winters and infant death was commonplace - a shocking fact Gough Whitlam reminded voters of in Labor's historic "It's Time" 1972 election. Taylor says Hollows and his team of volunteers made a significant impact, with the number of trachoma cases falling despite the wretched conditions and limited medical understanding of what they were dealing with.

"People lived in tin sheds and humpies made of iron and branches. Life was grim wherever we went, whether it was the Anangu Pitjantjatjara Yankunytjatjara lands of South Australia, Papunya in the Northern Territory or the goldfields of Western Australia. We did not fully appreciate the importance of clean hands and faces in controlling infection."

Hollows, who went on to become Australian of the Year and internationally celebrated for his efforts to eradicate preventable blindness in the Third World, badgered the Fraser government and the College of Ophthalmologists to launch a national campaign to eradicate trachoma.

Alerted to the disease by Frank Hardy - the author who drew world attention to the Gurindji walkoff at Wave Hill Station in the NT - Hollows spearheaded the campaign, enlisting the help of 80 medical interns.

Thirty-five years on, Taylor is now professor of indigenous eye health at Melbourne University and a persistent public advocate and thorn in the side of government. His unit, established five years ago, produces an indigenous eye health survey that benchmarks progress and maps out a national strategy with 42 recommendations for closing the gap on issues such as trachoma, diabetes-related blindness, cataracts and vision loss.

He says the Third World disease remains as deeply embedded as ever in the desert dust, human grime and impoverished lives of indigenous Australians. A recent survey by the unit estimated that nationwide there are 20,000 men, women and children at risk of trachoma. Some 5000 are children.

Australia is the only developed country among 57 with "endemic blinding trachoma", a disease eradicated from mainstream society 100 years ago. The doggedness of a disease so easily cured in remote communities (yet common in failing African states such as Sudan and Somalia) is hard to explain given the general level of healthcare.

In the Northern Territory, Western Australia and to a lesser extent South Australia, strategies encouraging personal hygiene and targeting infected children with new-generation six or 12-monthly antibiotics are having a significant impact. Older patients are regularly operated on when eyelashes turn inwards because of infection, damaging corneas. In communities around Ali Curung near Tennant Creek in the Barkly Tablelands, infection rates are falling for the first time in years. But that is not the full picture.

Despite the recent advances, the overall trachoma statistics are a national embarrassment. Six out of 10 remote communities are afflicted even though children begin life with eyesight generally superior to that of non-indigenous children. According to "The Road Map to Close the Gap for Vision" produced by Taylor, the rates of preventable eye disease remain at alarming levels. Two-thirds of remote communities surveyed have endemic trachoma. Blinding cataracts are 12 times more common in indigenous adults. Forty per cent have not yet had corrective surgery.

Professor John Funder, a medical researcher and former director of the Baker Institute, says it is not medical science that has betrayed trachoma sufferers, but deeply troubling systemic mid-level bureaucratic indifference. Of $16 million set aside by the Rudd government for trachoma eradication in 2008, a significant amount remains unspent. New South Wales, with the nation's largest indigenous population, has sat on its hands for three years while health bureaucrats haggle with Canberra over the scope and timing of screening programs. Queensland, where trachoma was recently rediscovered, is home to the second-biggest indigenous population and has been equally indolent.

Funder, also a senior fellow at Prince Henry's Institute of Medical Research and a professorial associate at Melbourne University, is scathing in his assessment of the health bureaucracy, believing Kevin Rudd should have stuck to his "word" in wanting the Commonwealth to take over state health services. "It was unfortunate that he got rolled before he could do it." Under Prime Minister Julia Gillard, progress has been incomprehensibly slow, with other priorities getting in the way.

The "appalling" Commonwealth-state relationship has been an impediment to forging an effective national trachoma strategy, Funder says. "The duplication, but more importantly the stagnation, is terrible. Progress is glacial. NSW has not got off its arse. Blockages occur at the mid-level where bureaucrats meet every three months, fail to resolve their differences and then agree to meet in another three months."

One positive, he says, has been the appointment of Jane Halton, the blunt-talking secretary of the Department of Health and Ageing, who is reported to be equally frustrated by the lack of progress and has taken a deep interest in trachoma, seeing it as an important marker of indigenous health, a cause she has championed in closing the health gap between mainstream and indigenous Australia.

Taylor is more diplomatic than Funder, attributing the glacial progress to systemic failings in accountability and national oversight. "A champion like Fred Hollows comes along and the situation improves for a bit and then slips back when the champion disappears," he says. After the promising start, Hollows' efforts were lost in a bureaucratic maze when the states and fledging indigenous health services cornered control of the trachoma effort.

Since the mid-1970s there have been 11 health ministers, nine heads of the Commonwealth Health Department, seven formal reviews of indigenous health and constant department name changes. The changes resulted in more confusion than progress. "When we did an indigenous eye health survey five years ago, we found that, over 40 years, indigenous blindness rates had fallen from being 10 times higher than the mainstream society to six times higher and 94 per cent of blindness and bad vision is preventable," Taylor says.

There is a further explanation for the low priority accorded trachoma. Dr Tim Henderson, ophthalmologist and director of eye health at Alice Springs Hospital, who grew up in central Africa, points out that trachoma is a long-term ailment that starts with infections in young children and teenagers and only becomes a serious medical issue 20 or 30 years later when the eyelashes turn in and scrape the cornea, leading to blindness.

Henderson's team covers 1 million square kilometres. With health resources stretched, other eye complications such as cataracts, diabetes-related blindness and renal failure, which strike Aboriginal people in their 20s and 30s, get priority. "Resources tend to go to immediate problems," he says. "At a local level there is a sense of dealing with issues that will blind people now. People don't die from eye problems, so funds and resources gravitate to acute care."

He has also noticed a striking difference in the priority placed on eye care between African and Aboriginal people he has worked among. "In central Africa, people will walk all day, then queue for days, offer their last goat, only to be told there is nothing that can be done. In desert communities where people are highly mobile, they are reluctant to wait 10 minutes when they have pressing cultural obligations . . ."

But perhaps the greatest pointer to national indifference is the fact that the future of Taylor and his highly accomplished indigenous eye unit is in doubt. After five years of snapping at the heels of recalcitrant bureaucrats and government ministers, developing screening techniques and advocating reform, the unit's survival is under a financial cloud. If Taylor and his unit disappear, Funder, who is prepared to donate $100,000 to keep it going, believes the fight against trachoma may be lost.

"It is crucial that Hugh keeps going in this role," Funder says. "If trachoma can be beaten in the next five years it would mitigate the general sense that indigenous health is an area where there is little progress and not much hope."

The indigenous eye unit operates on a budget of $1 million a year and was started with donations from the Harold Mitchell Foundation, which contributed $1 million, the Ian Potter Foundation, a range of private donors and matching funding from Melbourne University. Mitchell, a Melbourne businessman who is beating the bushes for new donors, believes trachoma could have been defeated in five years "but Hugh and his team ran into a great big bureaucratic wall".

Mitchell said it was easy for him to make the initial financial commitment, which runs out in June, because it was a "disgrace" that trachoma remained a public health issue.

"It is inconceivable to me that Australia has something that only seven other Third World nations have got, that when it comes to trachoma we are ranked with the worst of the worst."

But Mitchell, the nation's largest media buyer with substantial overseas interests, believes the cause is not without hope. "Jane Halton is genuinely committed, she wants to move it along and knows that as a nation we need to put an end to this preventable disease once and for all."

Taylor believes that with comprehensive screening, the promotion of face washing and super-antibiotics, new cases of trachoma could be wiped out over five years, (those who have the disease severely now would, of course, still develop complications later in life).

He sums up the situation this way. Vision loss accounts for something like 11 per cent of the health gap between mainstream and indigenous Australia. "Closing the gap is a 25-year process, yet we estimate trachoma and [related] blindness can be virtually eliminated in five years. That would cost the community around $90 million.

"If we fail to act now, in 20 years the number of blind or visually impaired Aboriginal people will double from 15,000 to 30,000. It is that simple and that tragic."

WHAT IS TRACHOMA?

Trachoma is an infectious disease affecting the inner surface of the eyelids. Globally, about 40 million people have an active infection and as many as 8 million people are visually impaired as a result.

Trachoma begins with chronic eye and nose infections that spread under the eyelids. Active trachoma is usually found in children.

Over time, the inflammation recedes, leaving scarring that cause the eye lashes to turn inwards and brush against the cornea. Left untreated the sufferer goes blind.

Prevention begins with children being taught to regularly wash faces, eyes and noses, and the treatment of infections every six or 12 months.