An Open Letter to the Prosthetics Industry

I had a much more positive post written to reboot this blog and then I made the mistake of going to the prosthetics office on my birthday…

Let me tell you the story of my prosthetic care, or more aptly, the lack thereof since moving to British Columbia (BC).  

I moved to BC with a Genium computerized prosthetic knee, manufactured by Otto Bock, the largest prosthetic company in the world.  I was lucky enough while living in Saskatchewan, to not only have good coverage from the province itself, but also from my employer.  In some sense I was spoiled, although in my opinion spoiling someone when it comes to replacing lost limbs is nonsense. We should be providing the best possible prosthesis to every amputee in the world, regardless of cost.

Back to my story.  When I moved to BC I did not think coverage for my prosthesis would be anywhere near the issue it has been.  When I got here my knee was already malfunctioning, well actually it was working fine, but it was giving me an error message.  I visited a prosthetics office to see about getting my knee sent in for service. I was informed that I did not have coverage for the prosthetic work required to send my knee in for service and set me up with a loaner knee.  I would need to pay the prosthetics office a fee of $300-$500 just to send my knee in for service. I was not impressed, essentially I was being asked to pay out of my own pocket to access the free warranty on my knee. I had also just moved to BC and was strapped for cash.  Since the knee was still functioning fine, outside of the error message, I let things be and figured I would re-approach the problem once I had my BC provincial health insurance in place.

Fast forward approximately six months, I had my BC health insurance and went to another prosthetics office to try getting my knee serviced again.  This office asked no questions and quickly got everything sorted to get my knee to the manufacturer (Otto Bock) for service, with no cost to me. I was relieved and thought that was that, my knee would get serviced and I would be good to go, if only it was that simple.  Otto Bock came back and said my warranty was actually void because I hadn’t gotten the knee to them within their service timeline. This wouldn’t have been a huge issue, but BC health will not cover any costs related to computerized prosthetics or prosthetics purchased in another province.  Lucky for me, my prosthetic fits both of those conditions.

After some back and forth between my prosthetics office and Otto Bock they eventually reinstated my warranty and repaired the knee.  Within days of getting the knee back I it began to make a clicking sound, but it was still functioning properly.  I knew I needed to get it back in for service, but considering what transpired with my last attempts at service, I was in no hurry.  I finally took it in after a few months and Otto Bock came back and said the repair was going to cost around $6,000 and none of it was covered.  I think that is correct, but honestly this has been such a difficult and frustrating journey, I’m having a hard time remembering the specifics of the beginning.  My heart is pounding in frustration as I write this.

Again, my prosthetist went back and forth with Otto Bock and they eventually agreed to make the repairs free of charge, as they at the least seemed related to whatever repairs had been done prior.  So, I got my knee back and thought, “ok, this has to be good to go now”. I had my knee for two days, I went to a yoga class the first day and on the second day the knee completely stopped working. It began vibrating constantly and offering zero resistance; if I walked on it, I would fall, I was in the bank when this happened, and barely made it back to the car.  I turned around and took it back to the prosthetist, who then shipped it back to Otto Bock, who then came back saying it needed another $6,000 in repairs. I could not believe this, I had had the knee for two days and had done nothing more than walk and stretch. I cannot understand how the cost of these repairs would even partially be considered my responsibility.  Again, back and forth, back and forth and finally Otto Bock agreed to do the repairs.

So a couple months later and I get the knee back… guess what happens!  Five days after getting the knee back I’m bouncing around playing with Zeke, doing nothing anywhere near the edges of what the prosthesis is designed to withstand and boom, it starts vibrating incessantly.  Five long vibrations once a minute, and there is nothing I can do to stop it. Imagine your cell phone ringing in your pocket once a minute, but you are not aloud to answer it. Not once a minute for an hour, or two hours, but all day, day after day.  I was camping at the time, and man do I love the sensation of a never ending cell phone vibration, while enjoying the piece and wonder of the wilderness. On top of that the knee was not functioning well, it was offering very limited resistance. I could get around without falling, but it wasn’t pretty.

So I returned from my camping trip and had my prosthetist send the knee back to Otto Bock again.  I naively assumed at this point they would just fix it. I mean the knee was functioning completely fine, beyond giving me a minor error message when this joke of a service journey started.  And ever since the first repairs have been done, the knee hasn’t held up for more than a couple months, and generally has only held up for a few days at most. But no, Otto Bock came back and said it needs another $9,000 in repairs and they don’t seem too willing to bend on any of that this time.  

My prosthetist has kindly asked another amputee if he would be willing to give me a spare part of his that happens to be a large portion of the $9,000 cost.  This is all good with me, but it still leaves me with a significant out of pocket cost. And I don’t know how to justify spending money on this knee when the only thing it has proven capable of in the last year is breaking down, repeatedly.  I don’t know how in good conscious Otto Bock can ask this of one of their customers. Clearly my value to them as a customer is low.

I am now faced with the very likely possibility of significantly downgrading my prosthesis.  This is hard to swallow, hard to fathom and something I will not accept. It may and likely will happen, but I will not accept it as something that is ok.  I will not accept that prosthetics is a for profit industry. I will not accept that I am being denied access to the prosthetic that will allow to me to live my life without worrying about falling, or keeping up with my toddler to say the least.  I will not accept that the most disabling element of my life as an amputee is the very industry setup to replace the leg I lost to cancer. The leg I did not choose to lose. The leg that almost killed me. I will not accept that after facing death and beating the odds, something as trivial as a prosthetics manufacturer can take away my power.  

My Genium knee, which is now facing a likely early retirement, cost in the ballpark of $50,000.  I was able to use it for approximately three years, that’s a cost of $16,666 a year. Name me one thing you would be comfortable spending $50,000 on while knowing it would only last you three years?  At the least, it wouldn’t be a part of your body.

So what am I going to do?  I don’t know. I have a loaner Genium from Otto Bock, I’m tempted to just keep it and see how they propose to get it back.  I do know what I feel needs to happen.

1)British Columbia: your coverage for prosthetics is far below what it needs to be for amputees to live in this beautiful province without stressing about access to satisfactory prosthetics and service.  Fix it, fix it now.

2)Otto Bock: your state-of-the-art prosthetics are prohibitively expensive for countless amputees who would benefit from using them.  I know a lot of work goes into these prosthetics and I am all for you getting paid, but what is more valuable, your profits or an amputee’s quality of life?  Lower your prices, lower them now.

3)My employer: I won’t name you, you’ve been good to me in many ways, but the extended medical you provide for prosthetics amounts to essentially nothing.  Fix it, fix it now.

If you are reading this and thinking “dang, this guy is entitled”, remember I’m talking about a leg here.  What would you do, what length would you go to if you or someone you loved lost a limb and was denied access to the prosthetic that best suited their needs?

I know I could find a way to cover the costs of the repairs on my knee, but that doesn’t remotely address the bigger problem.  Heck, my hometown has already raised tens of thousands of dollars and purchased me a prosthesis when I first became an amputee 13 years ago.  I’m not interested in going that route, I’m interested in changing the system. In not only fighting for my own access to prosthetics, but access for all amputees.

If you are an amputee reading this, or someone who cares, or someone who might have some advice or ideas on how to mobilize for this cause please reach contact me. I cannot do this alone and I know I'm not the only one with a story like this. We need people power, we need critical mass and we need many voices if we are going to get the prosthetics industry to listen.

Prosthetists, you've generally been a lovely bunch to work with, I've worked with a few of you that I would venture to say are special people, thank you all for your hard work and dedication.

After 13 years as an amputee I’m beginning to realize how much energy the prosthetics industry takes from me.  I showed up at my prosthetics office yesterday in a good mood, it was my birthday, and I left with tears running down my face and rage boiling in my heart. The next day I struggled to focus at work and maintain my patience and composure with my son, which is the tip of the iceberg when you consider I've been an amputee for 13 years. This not only affects my physical wellbeing, but it also significantly impacts my self-confidence and  mental wellbeing. I am done being ok with this, I am done accepting this. I don’t care how long it takes, but starting now I am going to be loud about this, I am going to be peacefully disruptive, and I am going to hold the prosthetics industry accountable for the negative impact they are having on mine and countless other amputees lives.  This is just the beginning.