Climb, Nicole, climb: Local amputee advocates for the disabled
Posted: November 14, 2018 735
Climbing to the summit of a 19,347-foot, active volcano in Ecuador would be an accomplishment for anyone. Doing it on one leg and a prosthesis is nothing short of life-changing.
“I was so inspired,” said Edmonds resident Nicole Ver Kuilen of her fellow amputees, part of a team of elite climbers who made it to the top on Sept. 28, in honor of the 28th anniversary this year of the Americans with Disabilities Act (ADA). “It made me realize so many of the limits we put on ourselves are self-imposed.”
Losing a leg to cancer when she was just 10, Ver Kuilen has long challenged herself athletically. Then, in 2017, she took the next step, becoming an activist to improve the standard of care for all amputees, focusing on access to functional prostheses. “Most people don’t realize that the prosthetic technology seen in events like the Paralympics or for veterans is not available to most amputees,” she said.
“The only change I’ve had in 16 years to my prosthetic device is a pin-lock to keep my leg from falling off and a slightly more springy carbon fiber foot,” said Ver Kuilen, now 27. “My prosthesis is only designed for walking, and this is the only prosthesis that insurance affords me.”
In addition, her leg isn’t waterproof, not designed for active sports, and has no bend at the ankle. “When I sweat, it slides off my body, often creating blisters, sores and infections on my leg.”
Ver Kuilen said that such poor care is due to outdated policies, inequities in insurance coverage, and an inefficient health care system. “We live in an age where we have the technology to eliminate a disability. However, the power to grant access to that technology is in the hands of our politicians and insurance executives, not our care providers,” she said. “But policy can be changed to shift the power levers back to the medical community.”
Advocates, like her, support Insurance Fairness for Amputees legislation that would require private insurance companies to provide coverage of prosthetics at or above the level allowed by Medicare and Medicaid. It also removes coverage caps, ensuring that private insurance does not put a lifetime dollar-maximum in place. Twenty-one states have passed Insurance Fairness for Amputees laws. Washington state has not.