A parliamentary committee has been told that more than 150,000 people may be at risk of suffering the late effects of polio even though the country has been declared free of the devastating illness for more than 12 years.
In a discussion paper intended to raise awareness of the condition, which can cause debilitating physical and neurological symptoms, the House of Representatives Health and Ageing Committee said that although there are no reliable estimates of the prevalence of the condition, it was likely that thousands of Australians were unknowingly suffering from late effects polio or post-polio syndrome.
In the paper the Committee said evidence suggested between 20,000 and 40,000 people were infected by polio between the 1930s and 1960s and could be at risk of developing late effects polio or post-polio syndrome (LEOP/PPS), while immigrants coming from areas where the disease has only more recently been eradicated or continues to be endemic may also suffer from the condition.
At a public roundtable to discuss the issue, Dr Stephen de Graaff, Director of Pain Services and Senior Rehabilitation Physician at Epworth Healthcare, estimated that between 0.6 and 0.8 per cent of the population were polio survivors, suggesting that between 132,000 and 176,000 people may be at risk of the condition.
The Committee said one of the factors making it hard to accurately gauge the prevalence of late effects polio and post-polio syndrome was that they were difficult to diagnose – a problem exacerbated by the lack of clear diagnostic tests and limited awareness among health professionals of the conditions.
The discussion paper said that early diagnosis was essential if patients were derive the greatest benefit from treatment, but this was hampered by lack of a definitive diagnostic test.
It heard evidence from sufferers that many had been misdiagnosed with chronic fatigue syndrome, and reported that “many people living with LEOP/PPS continue to experience frustration, often waiting years to receive the correct diagnosis”.
The Committee heard that the effects of the affliction were substantial, including physical impairment as well as social, emotional and financial effects.
Committee chair, Labor MP Steve Georganas, said that “LEOP/PPS and its [sic] impact on the lives of sufferers, their families and careers have gone largely unrecognised in Australia”.
“The Committee was particularly concerned about the lack of information on the prevalence of LEOP/PPS and the size of the population at risk”, Mr Georganas said. “While the Committee understands that basic research is needed to improve diagnostic capability which will enable accurate determination of prevalence, in the meantime there is still a crucial need to establish a mechanism to gauge the possible extent of LEOP/PPS in Australia and the population at risk”.
The Committee recommended that the Australian Bureau of Statistics and the Australian Institute of Health and Welfare collect data on the size of the population of polio survivors, while medical schools include LEOP/PPS in their curricula and Medicare Locals work with groups such as Polio Australia to raise awareness of the condition both among health professionals but also the broader community.