For a disease with a projected short lifespan and no cure, ALS sure costs a lot of money.
A 2014 study indicated that on average, a Canadian ALS patient spent $32,337 annually (61% out of pocket).
I think that’s low, for many reasons, one of which is my own experience. I was diagnosed 11 months ago, and our equipment costs alone have come to just over $48,000.00. Add in the cost of a ramp (25K), prescriptions, therapy, and specialized transport and we are close to 100K.
Let’s look at just the equipment. Now, our out-of-pocket expenses have not been near those actual numbers because almost all of my equipment comes courtesy of our provincial ALS society’s lending library. That’s right, we’ve had 48K worth of equipment provided free of charge.
(A detailed list of my equipment and prices can be found here: ALSCost )
Here’s the thing with ALS and equipment costs, and why these “lending libraries” are so vital. ALS is a progressive disease, with no predictable deterioration of muscle and abilities until they are pretty much gone. In less than a year, I’ve gone from walking with a cane, to a rollator walker, to a transit wheelchair for shorter distances, to a manual chair and now a motorized one for constant use. I had a pair of 1500.00 custom crutches ordered (not covered by ALS Society) that took a couple of weeks to arrive, by which time I’d already lost the ability to use.
To pay for each of these equipment changes, only for each piece to become rapidly obsolete, would have been prohibitive for us, and I’m sure for most others. It breaks my heart to read stories and forum posts from ALS sufferers who are confined to home because they can’t afford a chair, or who can’t get a proper shower, or resort to diapers because there’s no way to get in and out of bed easily.
Those are, of course, not all of our equipment needs. The ALS society does not cover home modification, accessible vehicles, or very personal items; in short, most things that could not be re-used by another client, and nor could they be expected to.
Moving on to transportation: in our case, we have decided on accessible taxicabs and the local Handidart bus system for my main transportation. If I was in a wheelchair because of a spinal cord injury, for example, we would invest in an accessible van. But that’s a big investment when I might not be around for longer than a year or two. That’s the problem with ALS, you just don’t know. In September, I was able to get in and out of our motor home, and actually manoeuvre around in it. I can’t even get in it now. Again, if this was a permanent injury and I could expect a normal lifespan, we might invest in the modifications necessary but when you are looking at thousands of dollars that I might never see a return on, that’s a lot of money. If, might, maybe. No definites.
While I may not agree with the numbers in the study, I do agree with the authors’ conclusion:
“Mobilization of additional resources for ALS patients and families is required to soften the economic burden of this disabling disease.”
I don’t know how or where, and that’s a topic for another day, perhaps.
But equipment and transportation, they’re just some of the measurable costs. Those are easily tallied. Emotional costs, not so much. Neither easily tallied, nor easily addressed.
That’s why I can’t emphasize enough how much stress the BC ALS Society has relieved providing this service, and how very grateful we are that all it takes is a call to have the equipment in our hands.
This year, when you see the pledge drives for the ALS walks across the country, I encourage you to remember this, and know how well spent your donation is.