14 November 2016

Study reveals high price of disease rarity

A major new study has revealed the high cost of rare diseases to the State’s health system.

The Department of Health-led research shows that people with a rare disease account for a disproportionate share of hospital costs and are admitted twice as often as the overall Western Australian population.

Collective impact of rare diseases in Western Australia: an estimate using a population-based cohort was published in a recent edition of the US journal Genetics in Medicine and is one of the biggest investigations of its kind in the world.

The study’s lead author, Dr Caroline Walker from the Department of Health’s Office of Population health Genomics, said that although the study had drawn exclusively on Western Australian data, the investigation was comprehensive and would provide important insights for health planners and policy makers nationally and around the world.

The study captured all hospital admissions in Western Australia in 2010 and found that although people with a rare disease made up just 2 per cent of the population their hospital admissions represented more than 10 per cent of total hospital expenditure, costing close to $400 million that year.

The researchers also found that while the average hospital stay among the wider population was 2.9 days, for people with a rare disease it was 3.6 days and – where the admission related to the person’s rare disease – 5.5 days.

People with rare cancers were shown to have the most admissions.

Despite the marked disparity between the proportion of people with rare diseases and their impost on health services, Dr Walker warned that the study’s findings were likely to be understated.

“In reality, the numbers are likely to be much larger, due to the amount people who have rare diseases who have not yet been diagnosed,” she said.

“This study will help us better understand the needs of people living with a rare disease and better plan services for the future.”

Dr Walker said she and her co-researchers were well placed to undertake the project because of the State’s extraordinary data collections and data linking infrastructure.

Rare diseases are diseases that affect no more than one in 2000 people. Most are inherited genetically and are difficult to diagnose due to their individual rareness.

People with rare diseases tend to have multiple health problems and complex care needs requiring access to a wide range of health services.

Parkinson’s disease, Motor Neurone Disease, Huntington’s, haemophilia, muscular dystrophy, early-onset Alzheimer’s and cystic fibrosis are among the better known rare diseases.

Of the more than 6000 known rare diseases, 467 were captured in the WA study.


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