On the Move for O&P Advocacy Athlete takes on 1,500-mile triathlon to send the message that prosthetic componentry should be accessible
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icole Ver Kuilen is no stranger to facing challenges and overcoming obstacles. In fact, it is central to her existence—as an athlete, as an advocate, and as a person living with limb loss. She has just completed a 1,500-mile triathlon down the West Coast; along the way, she shared her own story and advocated for legislative changes to improve health-care coverage for prosthetic services. Ver Kuilen was diagnosed with bone cancer when she was 10 years old. A few months after her first chemo treatment, her medical team determined that her leg would need to be amputated to save her life. Learning to use a prosthesis is a challenge, but children are resilient, and Ver Kuilen was soon ready to get moving. That summer, she was faced with an obstacle that she didn’t know how to overcome. “All I really wanted to do that summer was go play in the water with my friends, but I learned that my leg wasn’t waterproof,” says Ver Kuilen. Growing up near the Great Lakes in Michigan, Ver Kuilen was looking forward to the summer traditions: playing in the water with her friends and visiting the water parks. Even showering became a limitation. Her family wrote to its insurance provider to request approval for Ver Kuilen to receive a waterproof prosthesis so that she would not have to face these types of limitations for the rest of her life.
O&PNews News | | April April2018 2018 12 12 O&P
From left, Natalie Harold, MSPO, Nicole Ver Kuilen, David Boone, PhD, MPH, Tom Fise, and Sen. Ben Cardin (D-Maryland)
Insurance denied the request. “They wrote back and said [a waterproof device] is a convenience item, and it’s not medically necessary; so, we didn’t really push it because we thought, ‘No,’ meant, ‘No,’” says Ver Kuilen. This was her first experience with being denied access to the prosthetic care she wanted and felt she needed. When she was 16, she again encountered a challenge in accessing a device she felt she needed. Engaging in a high level of activity was causing a lot of breakdown to her prosthesis—but Ver Kuilen was denied by her insurance company for a running prosthesis, despite her need for better technology to stay active. “It wasn’t really until this past year that I just got fed up with the system and the fact that I had been dealing with
the same barriers over and over again for 16 years,” says Ver Kuilen. She was in the process of having a new prosthesis built and trying to find something that insurance would cover that would allow her to continue running half marathons and competing in bike races. “After jumping through all the hoops, 26 appointments and a year later, I basically had to settle for the same technology that I’d had for the past five years,” she says. Motivated by her own challenges with access to appropriate prosthetic technology and care, combined with a growing awareness that so many others are unable to access the prosthetic care they need, Ver Kuilen launched ForrestStump.org and began planning a 1,500-mile journey: running, biking, and swimming down the West Coast.
