Today $6m was added to the Hendra Research fund in Australia by the Queensland and New South Wales after a Kelpie tested positive to the disease. Hendra Disease, until yesterday, was only found in flying foxes, horses and humans. Hendra’s mortality rate is high.
I want to start off by saying I agree with the additional funding – especially considering we have just seen the virus jump species. In fact, I believe as much money should be thrown at it as possible. After all we are a country of farms and horse races.
I would like to continue by asking a question: why is chronic illness often forgotten – is our quality (and in some cases quantity) of life not just as important?
I live in Australia – people say it’s the lucky country. Sure it is, if you don’t have a chronic illness. In 2010, over 61,000 people in Australia had medically diagnosed Inflammatory Bowel Disease (Crohn’s Disease or Colitis). Research funding for the conditions is currently 0.1% of the national allocation – approximately $850,000 – less than $14 per person. So… that should pay for the sandwiches after one of our scopes – thanks… next time can you make sure that mines on white, I was given multi-grain last time it doesn’t mesh with Crohn’s. In Australia, let’s say on the Gold Coast (where I live) $850,000 would buy you a nice 5 bedroom home on maybe 2-3 acres. The Australia Government expects that’s enough to service the needs of the 61,000 people who are currently costing the health system $2.7 billion dollars a year. There is nothing wrong with my numbers – but I think there is something wrong with their math.
This unfortunate state of affairs is not limited to IBD, chronic illness like depression which can often result in self harm and death is in the same situation. In cases like this, institutions and groups like Beyond Blue (for depression) and Crohn’s and Colitis Australia (for IBD) do more for members than the Australian Government would ever claim to.
So here we are… building a “National Broadband network” we don’t really need and locking immigrants up who are neither criminals nor animals… if the money devoted to just these two facets of Governmental operations was spread across all chronic illness many fewer people would be suffering in silence. In fact, with the best and brightest working on our problems we might even see some cures within the time of our generation.
I don’t see how they can justify making us deal with our disease, do our own research and fund our own studies while they still have their hand out at the end of every week taking a percentage of what those of us who can work make? To be honest – I think everyone with a chronic illness should get a tax rebate – let’s call it points for effort when you get out of bed to spur on the economy feeling like you have been hit by a bus.
Chronic illness in Australia is like the elephant in the room. People don’t want to talk about it or deal with it. Well, the people with it have no choice. I don’t remember saying one evening before I went to bed “…. and I’d really like a cool case of Crohn’s disease”. We didn’t ask for this and in most cases we didn’t bring it on ourselves…Yet things keep happening to make me (and others I am sure) feel like a Leper. Earlier this year Nicotine patches and selected gums were subsidised under the Australian PBS yet we are still waiting for life changing drugs like Entocort to be added.
Cases of IBD are said to rise by 23% by 2020 meaning there will be over 75,000 people in Australia with either Crohn’s or Colitis bringing the research spend per capita down to $11. The cost of the disease will likely be $3.4 billion at that stage.
If I thought it would help, I would get down on my knees on behalf of everyone with a chronic illness and beg for the help, finding and research we so desperately need to start curing these disease that rob people of the quality of life.
I know nothing I (or anyone else) could say or do would change the opinions of the people diving out the money. I know this because until one of them suffer with chronic illness – their care factor will be zero.