“The Cost of Muscular Dystrophy”
Parliament House – Canberra
Good morning, ladies and gentlemen.
It is a pleasure to be asked to speak to you today on behalf of the Australian Medical Association to launch an important report.
‘The Cost of Muscular Dystrophy’ explores the costs and social and economic burden of the disease.
The report will help promote greater public awareness and understanding of the disease, and assist in education to help the community help people and families afflicted with muscular dystrophy.
Muscular dystrophy affects many Australians, but it is not a disease that gets covered a lot by the media.
Its sufferers, however, receive enormous support, and not just from family and loved ones.
The Muscular Dystrophy Association has been providing support and service to the muscular dystrophy community for over 20 years.
The National Muscular Dystrophy Research Centre has a key role in researching this serious and disabling disease.
Assoc Prof John Gullotta
We refer to muscular dystrophy as if it were a single disease, but it is actually a group of neuromuscular disorders, all of which involve the progressive and irreversible weakening of muscle tissue.
There is also considerable variation in symptoms and in the needs of individuals and their families.
Muscular dystrophy is not a ‘lifestyle’ disease.
It cannot be avoided by anything the individual might do or not do.
It is not the fault of today’s society.
The various muscular dystrophies – more than 60 separate conditions — are genetic, inherited diseases.
Each has a separate cause, and, as yet, we don’t have a cure.
In the 21st century, it is remarkable how limited our knowledge is of the causes, cures and treatments of inherited and chronic disorders such as these.
What is equally remarkable is how little public information is available about the disease.
How many people have muscular dystrophy?
What type do they have?
What is their age profile?
What is the impact of living with the disease?
What are the direct and indirect costs – to the sufferers, their families and carers, and to the community?
Today we get the answers – the information – we so desperately need.
Thanks to a grant from the Jack Brockhoff Foundation, the Muscular Dystrophy Association was able to commission Access Economics to undertake research, which has culminated in the report being launched here today.
The report will help in many ways to better understand and manage the disease.
It will help us provide better care.
‘The Cost of Muscular Dystrophy’ will be the basis of future strategies in many areas.
It will help us with:
- diagnosis and early intervention,
- health service delivery,
- employment initiatives,
- policies to assist carers,
- accommodation needs,
- equipment and home modifications,
- long-term financing of health and disability care, and
- the specific needs of people who are currently disadvantaged due to their location or their cultural or linguistic background.
Muscular dystrophy was first identified by the medical profession in the 1800s.
The disease is a savage one, affecting more boys than girls, and wasting away muscle at the very time it should be developing.
The most common childhood form of muscular dystrophy is Duchenne muscular dystrophy.
Historically, it has been rare for children with this disorder to live beyond their late teens, but some defy the odds.
One young man named Ryan has written this description on his internet home-page:
“I was diagnosed with Duchenne Muscular Dystrophy – or DMD – at three years of age.
Most children with DMD are wheelchair bound between the ages of eight to 12. I was nine.
Children usually still have a fair bit of strength in their arms, but it varies depending on how severely the child is affected by the disorder.
As the person gets older, the disease slowly progresses … people with DMD have a shortened life span; again it depends on the severity.
I wouldn’t have understood the entire nature of the disorder until my early teenage years.
I suppose the first things I noticed were in primary school (between the age of seven and 12).
I tended to fall over easily and could not keep up easily with other kids with physical activity.
My parents would explain that I was not as strong as other kids.
I began to understand the nature of the disorder at the same pace as the disease progressed. It made more sense by the time I was in an electric wheelchair.
By the age of about seven or eight, I used a large stroller for long distances and, by the age of nine, I was increasingly using a manual wheelchair from day to day.
At this stage, I would occasionally use calipers for an hour or so a day to stand up or walk short distances.
I was in an electric wheelchair by the age of 10 and lost the ability to walk soon after that.
Having DMD takes away my independence and makes me reliant on family and carers 24 hours a day.
It also affects my family in that they have less time to themselves.
Another hurdle is the attitude that people have towards those of us affected by a physical disability … I have the same interests, ambitions and hope as most people do, except that mine are hindered by physical limitations.”
Ryan goes on to write about how muscular dystrophy has affected his life and the lives of those around him.
His descriptions of dealing with feeding tubes, ventilators, spinal surgery, the complications of arranging for carers, and the continual challenges of day-to-day life put an incredibly human face on a disease that affects nearly 3500 Australians.
The Access Economics research puts the costs of muscular dystrophy at $435 million a year, plus another $1 billion in lost wellbeing.
These costs are shared among individual sufferers, their families and friends, Federal and State governments, and others in society, including employers.
The Access Economics report points out that the indirect costs of muscular dystrophy are very high.
The report says that the burden of disease borne by individuals is also very high in terms of the number of life-years lost.
In fact, one of the key findings is that the impact of muscular dystrophy on individuals, in terms of the loss of healthy years of life, is greater than that of multiple sclerosis and of key national health priorities such as cancer, cardiovascular diseases and diabetes.
The report highlights tremendous impact on individuals – primarily young people — of an incurable, disabling disorder.
And this is one of the most important points about muscular dystrophy: rather than impacting prominently and significantly on the health care system, its major impact falls on sufferers and their families.
Perhaps it has been easy for health policy-makers to overlook only 3500 individuals who make a relatively small impact on the health budget (or on the political radar).
It would be nice if our political leaders in the middle of this election campaign could hear those 3500 voices.
Based on the findings of this report, policy-makers and others at least will now have clear guidance for future directions for addressing the causes, care and cure of muscular dystrophy.
The report will ensure that more people will have a greater understanding of this disease.
I now declare ‘The Cost of Muscular Dystrophy’ officially launched.