Rates of ALS: OZ vs UK vs US

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Graybeard

Graybeard

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PALS
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12/2013
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Surf City
An old co-worker recently retired to Perth from UK, and responded with this to my recent update letter:

"MND gets a great deal of attention here in Australia with specific sports lead charities fund raising for research. Seems to be a hot spot for it down here to with disproportional high numbers of sufferers compared to population."

I know there are 5,000 new cases a year here, meaning 1 in 64,000. How about the ROW, Rest Of the World?
 
I was curious and looked up some stats. If my math is right adjusting for population it does seem that per capita MND is Twice as common in Australia as ALS in the US. A tiny bit of that would be MND is a broader definition. Also it looks like MND is reportable and accurately tracked in Oz it is not here and I suspect there are more cases than we know. Another factor may be a somewhat more homogenous population in Oz. I have seen at least one study that says ALS is less common in people of mixed race ancestry. Just my thoughts
 
well, if the are 30,000 living ALS patients in the usa and a 2x incidence in veterans, then 20,000 vet plus some % for non-military associated operations, one has to wonder ...
 
A two times incidence in vets does not translate into 2/3 rds of ALS patients being vets as not everyone is a vet. Each vet has an individual risk of getting ALS that is twice that of a nonvet member of the general population. Of men about 24 percent are vets but only 2 percent of women so maybe 13 percent of the population
 
>A two times incidence in vets does not translate into 2/3 rds of ALS patients being vets as not everyone is a vet.

oops. ALS is taking over my mind :-(
 
I’ve read that there are about 2,500-3,000 people in Canada with ALS. Given that Canada has a larger population than Australia, your number of 5,000 people with MND does sound higher. But, as others have said, perhaps the criteria for MND and ALS are different.
 
The odds as far as I have read are 1/50000. I don't think it changes depending on where you are from. Unless you are from Guam, they seem to have their own strain there.
Vincent
 
The Guam thing is really interesting and apparently the rates of neurological disorders ( there were a couple of other things that clustered besides ALS ) are dropping and are becoming more in line with the rest of the world. The apparent reason was the custom of eating fruit bats that in turn had eaten a certain kind of berry that was a neurotoxin. Even before that was theorized people ate less of them simply because of changing customs
 
Thanks for the inputs so far.

Total number will be skewed by average longevity, whereas number of new cases is not. 5,000 new cases a year should mean 5,000 deaths a year. If 30,000 in the US are living with it, doesn't that make average 6 years longevity?
 
Nikki J said:
Another factor may be a somewhat more homogenous population in Oz. I have seen at least one study that says ALS is less common in people of mixed race ancestry. Just my thoughts
Click to expand...

Nikki may I ask what you mean when you say we have a homogenous population here?

We are a young country, only founded 200 years ago and are considered a real melting pot, you name it we got it here and it gets mixed together. I consider myself a typical local Aussie but I'm English, Irish, Scottish and Italian in my bloodlines.

Would be really interested to know where you got the stats figures from Nikki, I have wondered quite often about any possible differences in rates between countries.

GB were the 5000 new cases a year the US figures? 730 a year in Australia is the official figure diagnosed per year here with a population of 23.5 million. If I do my figures right that's around 1:32,000 which would be twice your rate.
 
Tillie your numbers are the same same as mine. I also thought the MND Oz rate is twice US ALS rate. I used Graybeard figure and US pop searched online. Plus the same number you have which from the table I found seems reported as the number is so precise and the Australia population number that came up on a search.
I have never been to Australia sadly. My perhaps erroneous impression is that in the US there are more people who are not purely Caucasian, Asian, Native American or of African ancestry etc. I myself am mixed race going back a couple of generations ( but got my ALS from my North European mother) from what you report you are from different ethnic backgrounds but all are Caucasian? It is the mixed race as opposed to mixed ethnicity that seemed in what I had read to be somewhat lower incidence which is why I thought it relevant. But maybe there is just as much mixing in Australia?
 
Nikki J said:
My perhaps erroneous impression is that in the US there are more people who are not purely Caucasian, Asian, Native American or of African ancestry etc. ... snip ... It is the mixed race as opposed to mixed ethnicity that seemed in what I had read to be somewhat lower incidence which is why I thought it relevant. But maybe there is just as much mixing in Australia?
Click to expand...

Ahhhhh ... thanks Nikii!
I wonder where I might find data on this, I don't have time to search right now, but it would be interesting to do so. I see the difference now in what you are saying about ancestry.

We have a high rate of immigration compared to births and I know that most of these are not caucasian.

I never realised before this thread that our rate here is so much higher and I've never heard anything in Australia about figures for vets either as to whether we also have higher rates, I know the government does not recognise this as so.
 
Just a side note... scroll back two months on the Newly Diagnosed. That's just this Forum and just those who are computer savvy. Just two months. And as I think as Nikki mentioned... ALS/MNDs are not required to be reported in this country. Who really knows where the true numbers are. The number of Vets over the non-served population is unexplainable... so far.
 
Where Steve and I grew up, we know of a fals group of 4 and 3 others in a very small population area. Maybe 40,000 people. There is also a lot of multiple sclerosis, huntingtons disease, adhd,autism, etc. Interestingly,, the area had a SAC base and missile silos are all over the area.

Cancer rates are also very high but heavy cigarette and alcohol use correlate fairly well with the most common types of cancer found.
 
Steph, I am not disputing anyone’s figures, ratios or estimates. I can’t help but wonder when I read there are 65 ALSA affiliated ALS Clinics just in this country. There are countless, if not a hundred or more clinics that are not ALSA affiliated. (Someone in the Newly Diagnosed posted a clinic they go to that is not ALSA affiliated or certified). And… members here have written they see no need to go to clinic anymore. Many don’t go to a clinic and just stay with their neuro or end up going back to him/her rather than clinic. I know several 50, 60, 70 year olds who are mouse clickers only when it comes to computers so we don't hear from that group.

And there are some, for some weird reason (my opinion), cherish to keep ALS as a rare disease… the extremely rare. I haven’t figured that one out yet… I sure hope it isn’t some weird pride.

Not too many years ago Alzheimers was considered rare… not anymore if anyone read their last AARP magazine. I’ve notice a lot of the publications that go with that ALS “5000” number are from 1998, 2002 and 2005. Back when David was active in the Forum that same number was around. Well… it’s 10 years later and we Baby Boomers are at the prime age for MNDs.

Again, not disagreeing with anyone else’s opinion, statistics or internet research… too bad there isn’t a way to get it accurate and up to date.
 
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