Nicole 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 healthcare coverage for prosthetic care.
Nicole 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 Nicole was ready to get on with her new normal. That summer, Nicole was faced with a challenge 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” said Nicole.
Growing up near the Great Lakes in Michigan, Nicole was looking forward to the summer tradition, playing in the water with her friends and going to the water parks. Even showering became a limitation. Her family wrote their insurance provider to request approval for Nicole to receive a waterproof prosthesis, so that she would not have to face these types of limitations for the rest of her life.
Insurance denied the request. “They wrote back and said this is a convenience item, it’s not medically necessary; so, we didn’t really push it because we thought no meant no,” said Nicole. This was her first experience with being denied access to the prosthetic care she wanted and felt she needed. When she was 16, her high activity level was causing a lot of breakdown to her prosthesis, but Nicole 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 really 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, said Nicole.” 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 appointment and a year later, I basically had to settle for the same technology that I’d had for the past five years,” said Nicole.
Motivated by her own challenges with access to appropriate prosthetic technology and care combined with her growing awareness that so many others are unable to access the prosthetic care they need, Nicole launched ForrestStump.org and began planning the 1,500-mile journey, running, biking and swimming down the West Coast.
Nicole’s teammate and clinical support during the Forrest Stump journey, Natalie Harold, MSPO said, “I have to commend Nicole for the idea of Forrest Stump, because the whole goal wasn’t out of a place of selfishness. She had faced the same barriers over and over for 16 years, but she didn’t set out to get attention or raise money for herself. It was all bigger in scope.”
Natalie is new to the O&P profession, but wants to see more people living with limb loss get access to the appropriate technology for their prosthetic needs. “We’re not advocating for every amputee to get a running blade, because that is not appropriate for every amputee; we’re only asking that the technology that is available be accessible, when appropriate, to all amputees,” said Natalie.
Nicole and Natalie joined Dr. David Boone and University of Washington O&P student Justin Rheault for Hill visits during the 2018 AOPA Policy Forum.
Watch the videos below or listen to the Podcast to find out more about Forrest Stump and Nicole’s experience on Capitol Hill.
Nicole discusses her experience on Capitol Hill
Watch the full 17-minute Policy Forum Debrief