shares a victory moment with Kyle Stepp
Kyle Stepp had good cause to rejoice in mid-March when he took fourth place in his first-ever international triathlon. In addition to boosting his standing in the world paratriathlon rankings, the high finish showed that Stepp has the ability to be competitive internationally at an elite level. It proved that he truly belonged.
But when he crossed the finish line, his thoughts were with all the amputees who are still fighting for a sense of belonging—especially his allies back in New Mexico, where Stepp and other limb-loss advocates were backing a bill to broaden insurance coverage of prosthetic devices.
“I was pretty overwhelmed with emotion,” Stepp says, “because our bill was supposed to be heard in committee that day, and I was gonna miss testifying. And when I ran across the finish line and looked around at all these athletes, I realized that all of us are there because we have access. And there are so many other individuals in our community who don’t. They would love to have the same experiences, but the opportunity just isn’t available to them. Some of them are struggling just to get access to a walking leg, let alone a prosthesis for physical activity.”
Their struggle got easier on April 8, when the bill Stepp championed—HB131, the “So New Mexicans Can Move Act”—was signed into law. Amplitude has been following that campaign since late January, capped off by an in-depth post-session analysis in our May/June print edition. But we’ve never had the chance to bring you an extensive Q+A with Stepp himself. Until now.
Before we get to that, you should know that Stepp and his fellow advocates will be celebrating their hard-won prosthetic freedoms on Friday afternoon in Albuquerque. Festivities get underway at noon with a press conference, followed by a reception at 12:30. You can reserve a free ticket on Eventbrite.
And don’t neglect the similar bills that are still trying to make it across the finish line in other states. Colorado’s bill needs to clear the Senate before May 6; the Illinois legislation needs to make it through the House before May 19. Get all the details in our Legislation Tracker.
Our conversation with Stepp has been edited for clarity and length. Follow him on Instagram at @kylestepp.
It feels like there’s a connection between your competition as an athlete and your competition in the legislative arena. Am I imagining that?
I think there are layers to it. Physical activity is just a huge emotional and social benefit for everyone, and I need that outlet just like anyone else. It’s outlet for healing, purpose, belonging, and mental well being. Taking it to a competitive level, I have to keep all of that in perspective. My big thing is “no ego, no expectations.” No matter how I do in the standings, I just want to love this sport.
But competitive sports give me a platform to make a difference. It’s a platform to change systems and create more equity. Society has created a false narrative around disability. We have painted a picture of people with disabilities as individuals who can’t do certain things and are limited because of their impairment. Whether it’s in the news media, or through movies, or through other kinds of storytelling, the image that most people have of the disability community is of individuals who are stagnant. They’re just lying around. They’re immobile. But that story is based on the lack of access. You can’t be physically active, because your device literally doesn’t allow you to. There’s no place to start. You can’t even try. So the only option you have is to be immobile.
And the counternarrative is that if you do achieve mobility, then you’re Superman or Superwoman. You’re an “inspiration.” You can’t just be an average person with a disability who likes to run, hike, or ride a bicycle for fun.
The reason why individuals who are physically active are viewed as an inspiration is because it’s just not normalized for us to be physically active. And that comes back to the lack of access. If every single person with limb loss or limb difference knew from the very beginning that they could get access to a device for physical activity, it would start to become normal. It would start to happen naturally. Because under the current system, if you want to be physically active, you have to prove that you are worthy of it. And you shouldn’t have to prove shit.
If I have an ACL tear, I don’t have to prove to my physician and my insurance company that I’m worth getting the treatment to play sports again. It’s considered my right to get back to physical activity. I should have the same right whether I have an amputation or an ACL tear.
I love that analogy because it’s so intuitive. It really crystallizes the unfairness of the existing model. It seems like this talking point took on greater prominence after the legislative premise shifted from an insurer mandate to more of an anti-discrimination argument. Walk me through how that transition occurred.
The discrimination piece was something we’ve always known. But in the beginning, we thought the mandate was the only way we could get the outcome we wanted. The initial fiscal analysis showed minimal impact, and it didn’t say anything about a state defrayal. But we moved so quickly through our first two committees that the different entities couldn’t analyze the impact of our bill quickly enough. We actually didn’t get an updated fiscal impact report until after the Health and Human Services Committee [the second House body that considered the bill]. That’s when the Office of the Superintendent of Insurance (OSI) let us know there was a cost of defrayal.
Under the Affordable Care Act, if a state passes a new mandate that increases healthcare costs, the state has to cover the burden. That’s called a state defrayal. So the OSI emailed Liz [Thomson, the lead sponsor of the bill] and said, “There’s going to be a new fiscal impact report coming out, and we want to share it with you before it’s public.” So I immediately asked, “Can we can we just schedule a conversation? Let’s work through this.” Because my philosophy is that there’s always a way. There’s always a way to have the best outcomes for both parties. I just have that philosophy, that you have to have a conversation and try to understand where everyone’s coming from to come up with the best solution. So in our conversations with OSI, we did a comparison between what is covered for nondisabled individuals to return to maximum mobility, versus what’s covered for people with disabilities. And if your injury or illness results in the removal of a limb and you need an artificial replacement to restore full function, insurance companies will not cover that. But they will cover it if the removal of a limb is not required. This is the definition of discriminatory.
So we got rid of the mandate and ended up with two mechanisms that protect the patient. One is that you cannot discriminate in insurance coverage on the basis of disability. And two, the OSI can actually hold the insurance companies accountable prior to a denial. The insurance companies have to submit their overview of coverage to the OSI, and the state can say, “You have to provide this coverage, you can’t deny these devices or deny this care.” So they can they can take preventive measures to ensure that there’s no discrimination on the basis of disability.
So just in their normal regulatory function, they can proactively say, “The plan language falls short of of what this law requires; you have to modify this coverage before you can start selling the plans in our state.” Is that it?
Yes. And that removed the cost defrayal, because prosthetic coverage is already mandated as an essential health benefit under the ACA. So we’re not introducing a new mandate; we’re creating new coverage under the existing mandate. Or really, what we’re doing is forcing them to provide coverage they should have been providing all along. Physical activity should have been recognized as an essential health benefit.
You basically eliminated an arbitrary, artificial distinction that allowed insurers to define what is medically necessary and what isn’t.
Correct. And they got away with it because the insurance companies unanimously agreed to this definition. It would be different if some companies covered it and other ones didn’t. It was unanimous throughout the industry. There was nobody there to represent the customer, so we kept losing. There were no checks and balances on the insurers. This legislation is that check, to force them to provide what they should have already been providing.
Liz Thomson told me, “This has been a really special process. It’s unlike anything I’ve ever been through before.” What would you like to see other advocates in other states do to get similar outcomes to what you got in New Mexico?
The best way to empower communities is give them the microphone. Just give them a seat at the table. Because if we really want to make change, we need to design systems that meet the needs of the communities, and every community is vastly different. So just let the community tell you what they need. The reason why bills fail—the reason insurance fairness failed in New Mexico for so many years—is because you work with a lobbyist who doesn’t come from your community and doesn’t have any personal life experience. If you don’t have that, it is really hard to convey the reality of what that community faces.
The thing that made this bill successful is that we had local voices, and those voices came from the [limb-loss] community. The bills that go through quickly are going to be the ones where the people from the community are literally on the front lines. They’re the ones having the conversation with the representative or senator, not the lobbyists.
Could this have happened without your prior experience in state politics?
I knew how to move through this system, and you do need someone who knows knows how to navigate their legislative process. But I’m sorry, that is not rocket science. It just takes some time to learn how your state operates. But the piece that will make your bill successful is allowing the community members to be the ones who educate the elected officials. The lobbyists can set up the meetings, but the people from the community have to be the ones with the seat at the table. Just allow them to speak.