Our study on the average cost of an AKU patient has been very well received within the rare disease sector. We’ve had very positive emails back from a range of people (patient groups, industry, academics). One of these replies very kindly pointed me to the solid research carried out on the cost of Muscular Dystrophy in Australia.
Here’s a quote from the executive summary of the report, which was publish by Access Economics in 2007:
‘Muscular Dystrophy (MD) is the name given to a group of genetic and hereditary muscle neuromuscular diseases characterised by progressive weakness and degeneration of the skeletal muscles that control movement. The various forms of MD differ in terms of the extent and distribution of muscle weakness, age of onset, rate of progression and inheritance pattern.
In 2005, the financial cost of MD was $435 million. Of this:
- $236.2 million (54.2%) was productivity lost due to lower employment, absenteeism and premature death of Australians with MD;
- $117.8 million (27.1%) was the value of the informal care for people with MD, provided by parents and other close family or friends;
- $42.4 million (9.7%) was the deadweight loss from transfers including welfare payments (mainly Disability Support Pension and Carer Payment) and taxation forgone;
- $29.7 million (6.8%) was other indirect costs such as aids and home modifications, formal care services, transport and the bring-forward of funeral costs; and
- $7.4 million (2.2%) was the direct health system expenditure.
‘Additionally, the value of the lost wellbeing (disability and premature death) was a further $1 billion. In per capita terms, this amounts to a financial cost of around $126,000 per person with MD per annum. Including the value of lost wellbeing, the cost is over $415,000 per person per annum.
‘Individuals with MD bear one third of the financial costs, and their families and friends bear a further 21%. Federal government also bears one third of the financial costs (mainly through taxation revenues foregone and welfare payments). State governments bear under 2% of the costs, with the remaining 11% borne by others in society (including employers). If the burden of disease (lost wellbeing) is included, individuals bear 80% of the costs.’
That’s some pretty staggering figures. You can download the whole report for free from here: http://www.accesseconomics.com.au/publicationsreports/showreport.php?id=141&searchfor=2007&searchby=year.