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On the Move for Advocacy

On the Move for O&P Advocacy

Athlete takes on 1,500-mile triathlon to send the message that prosthetic componentry should be accessible

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 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.

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.

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Ver Kuilen’s teammate and clinical support during the Forrest Stump journey, Natalie Harold, MSPO, says, “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.”

Harold is new to the O&P profession but wants to see more people living with limb loss gain 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,” she explains. “We’re only asking that the technology that is available be accessible, when appropriate, to all amputees.”

Ver Kuilen and Harold joined David Boone, PhD, MPH, and University of Washington O&P student Justin Rheault for Hill visits during the 2018 AOPA Policy Forum.

Nicole Ver Kuilen’s Call To Action

Visit www.MobilitySaves.org for a video debrief, where you’ll learn more about the Forrest Stump project, the “1,500 Miles” documentary in progress, and athlete Nicole Ver Kuilen’s experience in meetings with members of Congress on Capitol Hill during the 2018 AOPA Policy Forum.

Here’s a sneak peek at Ver Kuilen’s call to action:

“I’ve been an amputee for 16 years, and nothing resonates more with me than the fact that I had my amputation on Martin Luther King Jr. Day. In a speech that he gave, ‘The Fierce Urgency of Now,’ he spoke about us (citizens) getting more involved. For me as an amputee, I don’t want to wait any longer to have access to prostheses.

“I think we can all band together to use our collective voice. My voice alone is very small, and in the amputee world, there are only 2 million of us, which is a very small percentage compared to the number of total people out there. So we need more people to advocate, to help lift my voice and the voices of other amputees.

“I want to invite people to come with me to Washington, D.C., as part of Forrest Stump, as part of AOPA, to advocate for prosthetics and orthotics—to push policy forward that is going to open up access to technology and care that will really empower people in their lives.”

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