Originally published at: https://boingboing.net/2019/11/04/bodily-autonomy.html
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I have some orthotics which have lasted decades but require new leather covers every few years. The manufacturer long ago stopped repairing them so I now go to the prosthetic repair place for the work.
It is very hit or miss. It depends on the technician and what materials they have in stock whether I get a cover that lasts or falls apart immediately.
There is something comforting about such a human craft being part of medical care, but disturbing that it doesn’t fit into the confines of insurance or standards.
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I suggest Erin invest in a set of tools. It might not be possibly to easily repair these devices, but I think its her best chance at the moment.
This situation piles awfulness upon awfulness.
You’ve got:
- An insurance company that will only replace vital equipment on a fixed schedule, not when the patient needs it.
- A medical device company that is getting away with making such a low quality product that it only lasts a matter of months.
- The warranty on the prosthetics is allowed to be so short that this situation even arises.
- The company refuses to repair their low quality product, instead charges six grand for a new one.
- After being messed around like this by the manufacturer and the insurance company, being left immobile and isolated and without the help she needs, the patient still feels the need to caveat their post with how they are supposedly privileged to be in this position, presumably to avoid people on the internet being snide and abusive towards her about the situation she is in.
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she should start a kickstarter. the pun alone would spread it across the interwebs and get it on the talky news shows. she shouldn’t have to resort to that, but it might help.
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Ok, so she should either try another brand or stop being the placekicker for the Tennessee Titans.
The insurance company should also be pressuring the supplier for not supporting its product.
An individual has very little leverage in these situations against firms that you need to live or live well - the payer has tons of leverage. Sometimes you can find a more helpful patient ombudsman rather than just an anonymous clerk.
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Hmmm… if only there were a way to make the payer in service to the public/patients, instead of its own profits. One that created a payer with enough leverage that a supplier would have to listen. I wonder how one might do that.
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Absolutely.
In the meantime we’re left with people relying on someone getting their story out and the public being angered. While that may work for a few - everyone else gets left behind.
That said - the ombudsman- and my union’s lawyers- were very helpful. Back when I was a union member.
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If the company starts servicing feet that have existed far beyond the warranty/durability spec they’ll just be building basically new feet for lower cost, which will cannibalize their current model, which exists because of insurance. The company’s being reasonable within the system as a non-consumer-direct provider-- it’s an insurance market problem. Single-payer would completely restructure so many organizations into more efficient operations it’s just mind-blowing.
The Facebook lady is admittedly being a bit sensational and muddles up details in order to explicitly request a signal boost. ‘Be my army’ social media stuff always sits kinda weird when it’s not organic. Maybe it’s just me.
I want to believe that this is a genuine issue for her (and that, yes, companies and insurance are shitty), but the fact that it’s on Facebook is an immediate eyebrow-raiser for me.
I get that, but it’s worth noting that certain communities just seem to live on Facebook as their social medium of choice, for whatever reason. If I didn’t hit people with swords, I’d be off of Facebook in a heartbeat, but that’s where all the sword-hitting communities have their social outlets, so Facebook it is. It could be that the community of prosthetics-users is similarly situated.
(Edit: Also yes, Facebook is the reason I haven’t bothered to click on the link to read TFA.)
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I’m glad prosthetic heart valve manufacturers don’t use this model.
“Your heart valve failed? Sir, I’m afraid you’ll have to wait three years to get a new one.”
“Sir?”
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This is a good point; Facebook has largely replaced the other group-gathering spots (Yahoo Groups, Google Groups, etc) for a lot of communities. I know that’s the case for LARP groups.
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Hydraulic feet??! My ex wore a FlexFoot, and still does. It’s a passive foot made from carbon fiber, and they last for about five years. They have good bounce.
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This is why designs need to be open sourced or give owners/local companies the right to repair. I do wonder if she were to reach out to well known makers and hardware hackers if they could figure out a way to repair the prosthetic.
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rock the kazbar foot the bill
Someone at my company wears those and he seems to get around pretty darn well, i’m sure there might be some daily difficulties and downsides i’m not privy to but from the outside looking in he does not seem to be living the life of a disabled person. Its really amazing to see the current state of prosthetics, although reading the story in question here i hope that “generic” or open source alternatives become a thing because otherwise people are left with no options when they need help.
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I would think that a set of these would be far more durable in the long run than expensive hydraulic feet that break once a year on the regular. I don’t know from prosthetics but the woman in question says she’s able to drive a normal car with her hydraulics, I’m not sure if that’s the case for FlexFoot users.
You are suggesting someone that may not have any repair skills learn how to repair “hydraulic rocker” feet. I am thinking that is not an entry level repair.
It would definitely be better if she was handy, and had the skill base to do so, but not everyone has that ability.
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