Boston Marathoner works to make running prosthetics accessible to all who need them

CATHY WURZER: There's a bill moving through the State Capitol that would mandate private health insurance to cover orthotic and prosthetic devices, supplies, and accessories. Right now, insurance covers the minimum for an amputee to be able to function. But it does not cover prosthetics such as running blades for athletic activities, which can cost thousands of dollars out-of-pocket. A Minnesota native has made it her life's work to provide equitable access to equipment and care to be able to be physically active.

Nicole Ver Kuilen is testifying at the Capitol for this bill-- has testified. On Monday, Nicole will be running the Boston Marathon thanks to her running blades. And Nicole is on the line right now. So happy to have you here, Nicole. Thank you.

NICOLE VER KUILEN: Absolutely. Thank you so much, Cathy, for having me.

CATHY WURZER: Help people understand here-- I'm sure many people thought, well, what the heck? Why aren't these covered by private insurance? Give us maybe a personal view of this-- tell us your story and why it has been important for you to get those running blades.

NICOLE VER KUILEN: Yeah. Absolutely. So I grew up just outside of Rochester. And I was diagnosed with bone cancer, osteosarcoma, when I was 10 years old. Was thankful to be able to have all of my treatment and some incredible oncologists and surgeons at the Mayo Clinic take care of me.

But after my amputation, I was really surprised, and my family was surprised, to realize that prosthetics for physical activity or even waterproof prosthetics are not covered by insurance. They're considered to be not medically necessary. And as you can imagine, growing up in the land of 10,000 lakes, not being able to go in the water as a kid or be able to play and be able to compete in sport was incredibly limiting for me.

And as I grew up, I started getting into sports in high school and then in college, and was trying to keep up and do half marathons. But was constantly breaking my one prosthesis that was not meant for running. And this was something that for me personally, I started to kind of push back on, and challenge the status quo, and wanting to make a difference on this from both a policy and advocacy perspective.

CATHY WURZER: So because you are active, and the standard prosthetic, as you say, just doesn't really work very well, are the running blades maybe a little more robust? And as such, are they more expensive?

NICOLE VER KUILEN: Yeah. Great question. And this is something a lot of people don't realize in terms of access. We've made incredible advancements with prosthetic care, but one prosthesis alone is not enough to replace what the human body can do. And so having access to a running blade is so incredibly important because of the biomechanics that are so different between walking and running.

When someone runs, they're actually putting four times of their body weight into the impact on every step that they're taking. And so if you have something, a prosthesis, a prosthetic foot, that's not designed to return that energy, you're actually damaging your body and you're damaging that prosthesis. So having access to a running blade is so incredibly important to minimize the injury and pain.

And that was something for me growing up trying to run on basically what feels like a brick, because it's not providing any energy return, ended up being in physical therapy twice a week with back pain. And I was breaking my foot every six months. And for those who have seen running blades in the media, these aren't just for paralympic athletes. These are for kids to be able to play in the playground or for individuals to run in their local 5k. This is a piece of incredible care and technology that's been created to help anyone be able to be physically active.

CATHY WURZER: What are the costs between a standard prosthetic and a blade?

NICOLE VER KUILEN: Yeah. In many cases, they're the same. It's the same cost, or even it can be less expensive. If someone is able to use their existing socket and just have access to the blade component, it can be anywhere between $2,500 to $5,000. But if someone does need an entirely new socket and system, a suspension system, it could cost between $10,000 to $40,000.

But that is the same price as any other everyday prosthesis that someone would use for walking. So this technology isn't more expensive. It's just the fact that our current system is incredibly limiting, that it only provides individuals with one prosthesis to do everything-- to do all the activities in their life.

CATHY WURZER: So what was the reaction from state lawmakers to your plea? Did you get a feel for whether they were supportive?

NICOLE VER KUILEN: Yeah. Absolutely. Well, this initiative is not just myself. There's so many incredible advocates. And I have to thank our chief bill sponsors, Senator Hoffman and Representative Kegel, for this. It's been amazing to see the reactions.

For many individuals, they can't believe that this is something that hasn't yet been covered. And they are absolutely in support of this-- many of our legislators. And the big thing now is, really, what we're trying to say is that it's time.

It's time that this needs to happen. We've heard from so many legislators that they were surprised this wasn't already covered or that this should have been done 30-plus years ago. And I think we're really getting to the point of having this conversation that this bill is really speaking to the moral conscience of Minnesota.

And the time is now to get this done. We can't wait another minute. This is really about the disability community being able to have access to what everyone else has access to. And this was really a stark comparison for me that I like to share with others-- but, for example, a 16-year-old playing basketball who tears their ACL can immediately get ACL surgery and get them back into sport.

But that same 16-year-old who loses their limb to cancer is not able to get access to what they need to be able to be in sport again. And so this bill, it's not just about technology. It's really about disability rights. It's about combating discrimination in our health care system and ensuring that every individual and every Minnesotan can have access to our beautiful state and our outdoors, from canoeing in the boundary waters, to playing on the playground, to playing hockey, to hiking, and to running in a local 5k. That's what this bill is about.

CATHY WURZER: You're going to underscore a lot of what you said Monday during the Boston Marathon. And I know you've been training hard, obviously. But I'm wondering, because of your blade not currently covered by insurance, do you need to be careful as you're training?

NICOLE VER KUILEN: That's a great question. Yeah, so I've been training for the past five months. And it's just been incredible to have access to a running blade to make this reality.

When I used to run on a prosthesis for walking, the best comparison is like running on a brick. But now, when I was able to get access to my running blade, it really does feel like I have my leg back. And just the energy return it provides-- I think people have seen those blades with the spring-- the energy that it provides is incredible.

And it finally matches what my other leg and the rest of my body is doing. And so, yes, in some cases, I have to be more careful than others. But it allows me to compete on the same playing field as everyone else. And I think that's just such an important piece for me being able to compete in Boston is that so many of our advocates have described how they've felt left out or they haven't been able to participate in the same activities as non-disabled individuals.

And here I am being able to run alongside thousands of other runners. And I think that's incredibly special and meaningful. And that's what this bill is all about.

CATHY WURZER: What's your goal for Boston?

NICOLE VER KUILEN: Yeah. So I ran Boston last year, and I ended up having a 34 minute PR. Came in with a time of 4 hours and 23 minutes. And so this year, I've upped it, and my goal is to do a sub-4 hour marathon. So hopefully another 25 to 30 minute PR. I'm really excited for that, and we'll see what's possible.

CATHY WURZER: We wish you well. We'll be cheering you on. Before you go, I know you also run a nonprofit called Forest Stump. If folks want to get in touch with you, where can they contact you?

NICOLE VER KUILEN: Yeah, absolutely. So Forest Stump was founded in 2017 after I did a 1,500-mile triathlon down the West Coast to raise awareness on this issue. And that's kind of where the "Forest Stump" name came about. But individuals can learn more at ForestStump.Org.

But this bill is also part of a national movement that's called So Everybody Can Move. And I would love to encourage individuals to go to soeverybodycanmove.org to learn more and find out what's happening in Minnesota, how they can get involved.

And, really, my call to action for everyone that's listening to this is to reach out to their legislators and let them know that the time is now to make this happen for us. This is such an important issue for the disability community, and we can't wait another moment to make this right for people with disabilities and Minnesotans with disabilities.

CATHY WURZER: All right. Nicole, thank you for your time. It was a pleasure talking to you. Good luck Monday.

NICOLE VER KUILEN: Thank you so much, Cathy.

CATHY WURZER: Nicole Ver Kuilen is a prosthetic advocate. And she's running, as I mentioned, the Boston marathon on Monday.

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