Tuesday, 5 March 2013

ALS Is An Expensive Disease

The "average" ALS patient in Canada incurs costs of somewhere between $100,000 and $150,000 over the course of their disease in order to sustain life. I say "incur" because groups like ALS Societies and medical insurance cover many of these costs. I don't have Long Term Disability or Extended Medical Insurance; I am very grateful for the ALS Society of Alberta (http://www.alsab.ca/). Without them my costs already would have been staggering and I am only in the earlier part of this journey. Let me walk you through a few of these costs.

Cane = $40. This is how it all started. I was having trouble walking, so I got myself a cane. Canes are not all that expensive. Everyone can buy one. This is the nasty way this disease works; it starts cheap and small. Then it ups the ante.

Bathtub Bench = $80. You can get an inexpensive tub seat for about $40. It would be useful for occasional use, such as when I come to visit you. My brother Adam did that and I am grateful. For a seat that can take the stress of daily use, you are looking at around $60 and up. If you want a transfer seat so you can get from a wheelchair to the tub, that costs $100 or more. Thankfully the ALS Society of Alberta provided me with a seat with transfer bench. Still, I bought my own seat to use when I am on road trips. It's smaller, but still costs a fair bit.

Walker = $600. That's right, a decent walker can cost upwards of $600. I am a big guy, a tall guy. A small frame lightweight walker wouldn't last a week for me. So I need a heavy framed walker that can take my weight and survive the pounding. Mine was supplied by the ALS Society of Alberta.

Wheelchair = $5,000. This is where it starts to step up. My basic loaner wheelchair only costs around $3,000; it's an entry level model. The one I want will cost $5,000. The ALS Society has this basic chair and has given it to me for the duration; they will get it back when I die. With my own chair, I would like to see it donated to the ALS Society of Alberta so the next person who gets this pernicious disease will have a good chair.

Truck Modifications = $8,800. And I went low budget! Instead of the fully extendable seat I went with the basic platform. Instead of the in-bed wheelchair lifter, I went with a simple back seat wheelchair crane. I got a basic hand powered control set. Just so you know, a wheelchair accessible mini-van costs around $65,000; you can usually get a well-used one for somewhere around $30,000. The high-end lifter seat costs about $9.500 and an in-bed wheelchair crane and canopy lifter system will run you as high as $25,000.

Power Wheelchair = $24,000. Didn't see that one coming, did you? Neither did I. These power wheelchairs are heavy, battery powered monstrosities that cost an incredible amount of money to build and maintain. They are like a car and just about as expensive; they need regular servicing and maintenance. It all costs money, in my case provided by the ALS Society of Alberta.

So far I have spent somewhere in the realm of $15,000 to keep going and I am just starting. The ALS Society of Alberta has provided twice that in hardware. I haven't yet looked at the cost of a hospital bed, slings, lift systems, breathing devices, feeding tubes and special food - all of that awaits me, if I get that far.

I can easily see where that $100,000 to $150,000 goes.


  1. Technology plays a big part in the escalating costs here, as it does in all medical care. We had what was once considered to be a state of the art Broda chair (unpowered) specifically designed for ALS patients. It was worth about $1500 used, over 10 years ago. But when it was time to pass it on, we couldn't even give it away, there were no takers, not even the ALS society. I'm not passing judgement nor finding fault, especially with the ALS society. If the new technology makes the life of the patient just that tiny bit more comfortable and dignified, it is well worth it.

    Also, for temporary use, such as when Richard goes visiting, the Red Cross has a short term loan program for many of these items.

  2. I had no idea about the Red Cross loan program. I know the hospital had one when my Dad was there. Perhaps it was also a Red Cross service. You are right about technology driving costs. I have to say that the cushion for my wheelchair, which costs more than $500, makes it so much better when you have to sit in it 12 hours a day or more.