‘Running on a Brick’: The Harsh Reality of Amputees Seeking Proper Prosthetics
Multiesporte
, by Fabienne Lang
Movement shouldn't be a privilege or left to chance. Fabienne Lang discusses with Nicole Ver Kuilen and Kyle Stepp the challenges amputees face in the U.S. securing their human right to an active life and how these athletes are working together to change that.
About 21 million people in the U.S. live with a physical disability – equivalent to the population of Sri Lanka, twice that of Sweden, or four times that of New Zealand. Yet, half of them live sedentary lives.
Globally, the World Health Organization (WHO) estimates that of the one billion people needing assistive devices like prosthetics or orthotics, nine out of ten lack access. Prosthetics replace missing limbs, while orthotics support and stabilize body parts.
Being able to move is a basic need. Physical activity benefits everyone, whether or not they live with a disability, enhancing health and preventing chronic diseases like heart disease, stroke, diabetes, and some cancers. However, the disability community faces significant barriers to physical activity. Nicole Ver Kuilen and Kyle Stepp are part of a team that is changing this in the U.S.
Nicole and Kyle are advocates for equity for amputees in sports. They are exceptional athletes. They are also leg amputees.
Bronze medal at the 2023 World Triathlon Long Beach World Cup & Bronze Medal at the 2024 Americas Triathlon Para Championships.
Gold Medal and 2023 USA Paratriathlon National Champion in the Men's PTS2 Division.
Is a Team USA Paratriathlete aiming for the 2028 L.A. Paralympics.
Led the passage of 'So Every BODY Can Move’s' legislation in New Mexico and serves as a key adviser to the 'So Every BODY Can Move' national movement, Kyle also fights for nationwide prosthetic coverage.
Completed a 1,500-mile / 2,414 km triathlon along the Pacific Coast in 2017 that she called ‘Forrest Stump’. Because she had never in her life received access to a running blade, she used her standard walking prosthesis, showcasing the enormous difficulty and inadequate access to care for amputees.
Trained in Paratriathlon, targeting the 2024 Paralympics.
National Champion, 2x Boston Marathon Women's T-64 second-place finisher, Cotopaxi (19,347 ft / 5,897m) summiteer.
Founded the non-profit Forrest Stump and leads 'So Every BODY Can Move' at the national level to promote equitable access to physical activity for people with disabilities.
Difficult Diagnoses
Both Nicole and Kyle were diagnosed with a rare bone cancer as children. “In 2002, when I was eight years old, I found out I had osteosarcoma,” Nicole explains. “I was on my way to softball and running late, carrying all my gear down this hill, and I ended up tripping, falling, and spraining my ankle. After my parents took me to the doctor for an X-ray, they found this egg-sized tumor in my tibia. We joke it was my guardian angel that pushed me down that hill, because we would have never found the cancer so early.”
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To save her life, she made the hard decision to have her leg amputated at age 10. Her family had just moved and “[she] was the new kid in school and by Halloween [she] was doing chemotherapy, and then two months later [she] lost [her] leg. It was quite an ordeal to be the new kid in school, to lose all your hair, and then also lose your leg,” Nicole shares. It took her the next 15 years to come to terms with her disability and feel confident with it and herself.
Kyle was diagnosed with the same cancer at 14. “I was told I had a high grade of osteosarcoma within 24 hours of having a biopsy. It had metastasized to my lungs and was high grade, so it was a low prognosis,” he explains. Kyle spent three and a half years being treated, going through 98 chemotherapies and 13 surgeries, and lived with a stainless-steel implant in his leg for over ten years that gave him “drop foot and tons of chronic pain,” he says. He found his passion amid the hardest time of his life, and that was to make sure no child ever fights cancer alone. It became his purpose to honor and continue the legacy of the nine friends he lost to cancer during his chemo treatment.
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Despite Nicole and Kyle’s sporting accolades, their journey to getting appropriate running prosthetics and orthotics was a struggle. Nicole’s 1,500-mile / 2,414 km journey vividly illustrates the obstacles amputees face in acquiring prosthetics that meet their needs. Repeatedly denied a running blade by her insurance, for 15 years Nicole pushed her body using a standard prosthesis not designed for athletic activity. “It started to do damage to my body, and I was basically running my pelvis out of alignment. I was in physical therapy twice a week and had intense back pain because it [the prosthesis] was not meant to be run on,” she recalls.
Running on a running blade for the first time is magical. After so many years of running on what I would liken to running on a brick, it felt like I finally had my leg back.
Nicole began to question a system that seemed indifferent to her plight. Her decision to embark on a 1,500 mile / 2,414 km triathlon was fueled by a deep desire to expose the harsh realities faced by amputees who simply want to move like everyone else.
Only after completing this grueling journey and nearly two decades of persistent denials did Nicole finally receive a running blade – not from her health insurance but as a donation by the Challenged Athletes Foundation. “Running on a running blade for the first time is magical. After so many years of running on what I would liken to running on a brick, it felt like I finally had my leg back. It felt like running on something that provides energy return,” she beams.
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This transformative experience ignited a fierce determination in Nicole to support and advocate for amputees. She turned Forrest Stump into a non-profit organization, vowing to fight for the rights of those like her. “No one should ever have to go to this length to get access to something so basic and fundamental to our way of life.”
As for Kyle, when he faced the amputation of his leg above the knee in 2020 due to severe injuries and damage to his internal endoprosthesis (metal rods that replaced his tibia, knee, and femur) from a mountain biking accident, he initially felt a surge of excitement. At 26, the prospect of getting a prosthetic leg after years of discomfort from his endoprosthesis seemed like a new beginning. “I had two friends I met during chemo who were Paralympic snowboarders and won gold at the Winter Olympics in 2018. It gave me this mindset that anything was possible with a prosthetic limb,” he shares. He believed getting a running blade would be straightforward.
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You can imagine his shock when that wasn’t the case. “I was quickly thrown into the reality of how difficult it was to access a walking leg that is appropriate for my level of activity.” After also being denied a running blade by insurance, he only got his hands on one by chance when his prosthetist gave him a spare one lying around his practice. This stroke of luck was a lifeline.
Luckily, both Kyle and Nicole were donated running blades, but it underscores a harsh truth: A healthy, active lifestyle should not be left to chance.
The barriers to amputee equity in sports are vast and high in a country like the U.S. Running prosthetics are considered “not medically necessary” and denied by insurance. With a price tag of roughly $20,000 per prosthetic, health insurance denial, the lack of harmonized specifications, broken supply systems, and the fact that society is still not as inclusive of persons living with disabilities as it needs to be, the result for many people living with a disability means they have either no access or only access to low-quality, inappropriate products.
When people with limb loss have fewer options, they lead more sedentary lives. This reinforces insurance companies' belief that people with disabilities aren't active and don't need prosthetics or orthotics, perpetuating a vicious cycle.
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The question begs to be asked: What is disability? Is it the fact of missing a limb, if you’re an amputee like Kyle and Nicole, or is it due to discriminatory policies that block people living with disabilities from leading an active life?
And more importantly: What is being done about it?
Aiming High
Kyle and Nicole, along with trailblazers before them and their dedicated teammates today, are working together to transform this outdated narrative.
Through their work with So Every BODY Can Move, Kyle and Nicole are revolutionizing access to life-changing prosthetic and orthotic care for physical activity. So Every BODY Can Move was founded by four national nonprofit organizations including the American Orthotic and Prosthetic Association (AOPA), the National Association for the Advancement of Orthotics and Prosthetics (NAAOP), the Amputee Coalition, and the American Academy of Orthotists and Prosthetists (AAOP). It is fiscally sponsored by the AOPA Foundation. The team at So Every BODY Can Move mobilizes grassroots advocates and champion state-by-state legislative change, challenging the status quo and healthcare treatment for the disability community in the U.S. They are creating insurance coverage for recreational prosthetic and orthotic care, one state at a time.
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Since launching in 2022, seven states have enacted laws to provide individuals with state-regulated commercial insurance and Medicaid with coverage of prostheses and custom orthoses to participate in fitness, physical activities, and sport. Over two dozen states are expected to introduce and consider such coverage in their upcoming state legislative terms.
“Our ultimate goal is to create coverage for this medically necessary prosthetic and orthotic care in 28 states by the 2028 Los Angeles Paralympics, so we can then pursue federal reform,” says Nicole.
Our ultimate goal is to create coverage for this medically necessary prosthetic and orthotic care in 28 states by the 2028 Los Angeles Paralympics, so we can then pursue federal reform.
“It’s also the reason for our 28 x 28 Mobility Challenge,” she continues. “We want to keep our momentum going and fundraising is important to have the resources to get this done.” This virtual event runs throughout July to coincide with Disability Pride Month and is designed to inspire and engage advocates to help fuel a nationwide movement. For 28 days, you dedicate 28 minutes of your day to any physical activity – walking, running, swimming, cycling, or surfing – and every stride you take, every dollar you raise, supports their movement.
“We are so passionate about this, because of how it impacts us, not only physically, but mentally, emotionally, socially. The limitations that are put on the disability community oftentimes get embedded in our minds in terms of what we're going to be able to accomplish in life and how it bleeds into other aspects of our lives,” Nicole shares.
But it doesn’t have to stay that way.
Written by
Fabienne Lang
