19th April 2024
Open Bionics is thrilled to be celebrating another year of Limb Loss & Limb Difference Awareness Month, a perfect time to shine a spotlight on the stories and journeys of those within the limb different community. To so many, it’s a special time to come together to share stories and circumstances of challenges faced and overcome, living life adaptively, and providing education and awareness of limb loss to the broader community. Each limb different person faces their own unique journey, often when attempting to gain access to prosthetic devices to help improve their day-to-day.
Recently, Stacy W. of North Carolina began the journey to obtain a Hero Arm for her son Logan, who was born without his left arm and is ten years old. However, like so many others in the limb different community, Stacy and Logan faced a challenge that sounds all too familiar to many trying to obtain a prosthesis. Going through an insurance denial and insurance appeal process. After 2-3 weeks of fighting the denial, Logan’s insurance appeal was approved. We took time to speak with Stacy about their successful appeal process and what she would encourage those in similar circumstances to do should they find themselves combatting insurance for a prosthesis.
The journey began when the nonprofit organization E-nable was recommended to Stacy, and where she first crossed paths with our Orlando clinician Emily Shannon. Emily ran the E-nable chapter at her university around the same time the family got connected, though she had graduated by the time Logan received his first device. “Emily’s team actually helped build Logan’s first prosthesis, he was four years old,” said Stacy. “They built him a 3D printed Spider-man web shooter as well!” she said. After the experience with E-nable, Stacy became interested in 3D printing and taught herself the art of bringing things to life through 3D printing.
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“Emily really set the expectations, she let us know that insurance would probably deny this (Hero Arm) right out of the gate, but I am going to work with you to appeal it.”
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Logan first discovered that he wanted a bionic prosthesis when he saw a viral video of Robert Downey Jr. AKA Iron Man, presenting a limb different boy with a prosthesis. “I really need something like this,” Stacy described him saying. After years of searching and hold-off recommendations from occupational therapists, Logan told his parents “I want this. I can do a lot of things, but I’ll be able to do more things if I had something like this.” Logan expressed.
From there, Stacy reached out to Open Bionics in 2023 and almost as fate would have it, was reintroduced with Emily, now working with Open Bionics in Orlando. “We were like oh my gosh that’s so funny because it had been 5 or 6 years since we had last seen her,” Stacy explained. “It was so fortuitous; we were so excited to work with Emily again.” she said. “I was excited to connect with a family from my hometown in North Carolina, to begin with,” said Emily. “But once we realized the E-nable connection, we were all sold on moving forward.” Upon meeting with Emily in Orlando, Logan picked the new Spider-Man covers for his soon-to-be Hero Arm. Unfortunately, this is the point where the insurance hurdle presented itself and the strenuous insurance appeal process began.
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“In my appeal letter, I took the perspective of the prosthesis being medically necessary and something Logan needs, and how dare you deem that experimental?”
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“Emily really set the expectations, she let us know that insurance would probably deny this (Hero Arm) right out of the gate, but I am going to work with you to appeal it.” Stacy said of Emily’s involvement. Stacy explained that she worked closely with Emily to come up with a plan in preparation of a denial, that way when it occurred, they were ready to spring into action immediately to fight it. Within a few days of receiving the denial letter, they had compiled references and narratives justifying the benefits of the Hero Arm for Logan. “I immediately wrote a letter and we had documentation prepared to share with Logan’s doctor to help support the appeal,” Stacy said. “It was really discouraging at first because what kind of monster would deny a child-or anyone-a prosthesis that could help change their life?”
Check out photos and video of Logan at his Hero Arm demo trial at our Orlando Clinic. Content shared curtsey of Stacy (Logan’s mum).
It’s unfortunately common practice for insurance to deny the use of bionic prosthetic devices based on them being ‘experimental’ and not medically necessary, despite this technology being around for decades. Open Bionics, as well as everyone who has used a bionic prosthesis, knows that insurance companies are not the ones using these devices, and thus have no right to gate keep them from those who would gain quality of life from the use of them. “When you have a company and so many people who are behind this and are using the prosthesis – it’s not experimental, we are making progress.” Stacy explained. “In my letter, I took the perspective of the prosthesis being medically necessary and something Logan needs, and how dare you deem that experimental?” she said.
After review, the appeal was approved. “This kind of technology, the 3D printing, it lends itself so well to an amazing case study of how we make technology work for us in accessible spaces.” Stacy explained. Stacy wants those in similar circumstances to have the courage and support to fight back when insurance tries to deny access to prosthetics. “Even if you don’t feel like you have the right to have a voice, you do, and you have to fight for you.” she said.
In addition, Stacy encourages those to find their community of support as well. “Teaming up with Emily was a tremendous advantage, she had the resources.” Stacy said. “I don’t want another parent, I don’t want another child to have to go through this. You really must have the mentality that this is the system working against me and I’m not going to let it.” she said.
When Logan found out he would indeed be getting his Hero Arm, he was very excited. “It was very emotional,” Stacy shared. “He knows how much it can change his life, just make his life easier and more accessible.” she said. In practicing with the Hero Arm trial, Logan got the hang of control right away and wasted no time in using the Hero Arm to pick things up and even throw some objects. “It was such a big win, not only for Logan but for others. If we can fight this, others can fight this.” Stacy shared. Emily agreed: “The more we fight these denials, the better the chances of getting an approval. That one approval can set a precedent moving forward from which everyone can benefit. I want my patients and their families to trust that I will do my best to fight with and for them.”
Logan’s Hero Arm will be complete and ready for him to use in May, and Open Bionics is looking forward to seeing Logan suit up for the first time in Orlando! Stay tuned, as we will follow up with Logan’s journey once his Hero Arm has arrived. If you want to hear more about Logan’s bionic journey, his mum has shared her thoughts in this Medium article.
For anyone out there who may be struggling to help find support in combating insurance denials, know we are here for you and our clinicians are ready to help you through the process from start to finish. If you’re interested in a Hero Arm of your very own, please sign up here.