I first heard about the ExoSym device from CerebralPalsyStrong, a website that started out as Teen Cerebral Palsy, run by a young woman with hemiplegia, Katy Fetters. The video of her experience and the links she shared convinced me to contact the Hanger Clinic in September 2019. There are Hanger Clinics all over the place, but the only one that does the ExoSym is in Gig Harbor, Washington. That’s where the guy who invented the device works, and he reviews every case himself.
Prosthetist Ryan Blanck designed the ExoSym in 2009. His goals were to reduce pain and restore mobility to active-duty and retired service members with limb salvage conditions as a way to avoid amputation. The device provides increased dynamics and energy return. In 2013, Ryan joined Hanger Clinic to bring the ExoSym to civilians with severe lower-extremity conditions or injuries (info from Hanger Clinic).
I emailed them expressing interest, and they responded with the application, instructions, and a long list of articles and video links about others’ experiences. Suddenly, I’m learning about a woman from New Zealand who was born with clubfeet, now walking miles, and a man with spina bifida now going hiking. And they all say the same thing: the ExoSym is life changing.
I got started on the paperwork, which was a series of PDFs I needed to print, fill out, scan, and email back. One document was a four-page questionnaire about my abilities, similar to a PT intake form where I rated my ability to perform various tasks from “extreme difficulty” to “no difficulty.” Rolling over in bed? Moderate difficulty. Squatting? Unable to perform. Sitting for one hour? That I can do. After another twenty questions about strength and range of motion (limited and limited), it was time to record a video of the way I walk. I’ve included it below so you can see it in all its glory.
Let me say this. I know that I look different than those with typical gait. Obviously. But to me, I’m just walking. I can feel that I’ve got a significant side-to-side sway if I pay attention. Do I make myself feel a bit seasick if I walk around after eating too much? Yes, yes I do. But do I really know what it looks like? No. I think many ambulatory cerebral palsians out there will relate when I say I’ve been startled by my reflection when I walk past a store window. So there’s nothing quite like walking for the camera and then watching it back. I mean, geez! Do you see that right hand? So helpfully flexing at the wrist while the fingers point? This is what I look like. It looks rather laborious, doesn’t it? It is.
I sent all my questionnaires, and my insurance info, and my photos and video. And I waited. What would Ryan say? Could the Exosym help me? Would I be a good match? Would I have one on just my left leg, the more affected side? Or both? Or would he say no, it’s not for me?
Finally, I hear back. I’m a good candidate! Excitement floods through me. But my insurance doesn’t cover it. Here is what I understand from the explanation given to me: the ExoSym has been coded by the insurance company as a regular AFO, which are much less expensive to make than the ExoSym device. If Hanger Clinic were to accept my insurance, then they, the Clinic, would be on the hook for most of the cost. Which they cannot afford to do. The woman from Hanger assured me that I could come to Washington, get casted and try the test devices, just to see if it’s worth it to move forward, at no cost. Then I could take time to save or raise money, use their in-house payment plan, and make my first payment only upon receiving the real devices.
Okay, don’t panic. Maybe I could get a different insurance? We were just in the enrollment window for me to be added to my husband’s insurance for next year. When I email Hanger and ask whether his insurance would cover it, I receive a form reply in bold, all caps, and underlined:
The ExoSym® program is a PRIVATE PAY PROGRAM; the current description and associated reimbursement from insurance companies does not correctly describe nor compensate for the Program. As such, we are no longer able to provide the ExoSym® Program through any private or commercial insurances with the exception of Worker’s Comp, Standard Medicare (not replacement plans), Cigna, United Healthcare Commercial Plans, our local Premera (WA/AK) only.
Now I feel that I have been yelled at. I wonder why she hadn’t just explained this to me in the first place. I understand that they don’t want to scare potential patients away. But I also think that people need to be prepared and not have their hopes for, literally, a better (quality of) life dashed because of money. If they know the facts going in, they can start planning, saving, crowdfunding.
I know you’re wondering. How much is it? I will need two devices, and mine will come with the addition of knee joints. As of September 2019, each device (no knee) is $9,000. That’s $18,000, plus $1,704 for two knees. A grand total of $21,408 for the devices and several days of training at the clinic. Not to mention travel and lodging. No big deal for some. A very big deal for most.
With the in-house payment plan and some very generous family members, I will be able to afford my ExoSyms, and I am so grateful.
What Happened to Your Legs? 