from President Nixon, 1969
Early in our conversation, Bob Kerrey interrupts himself and asks: “Can I offer a political opinion?”
He’s been out of elected office for more than 20 years and off the presidential campaign trail for more than 30. Yet Kerrey, the former governor and US Senator from Nebraska, still has the fire for politics and policy. Case in point: He recently vented some heat in an editorial for Military.com, writing a passionate appeal to reduce the incidence of limb loss among his fellow veterans.
“Type 2 diabetes is the leading cause of amputations among America’s veterans, with more than 15,000 receiving lower limb amputations annually,” Kerrey wrote in that article. “As a veteran with limb loss (albeit not from diabetes), this issue is extremely personal. Before starting a career in politics, I served as a Navy SEAL in the Vietnam War and received a Medal of Honor for my service. Yet I’m troubled each time I see how many of my fellow veterans are suffering, especially given the highly treatable, even preventable, nature of diabetes and its complications.”
That’s far from the only recommendation Kerrey has about how to make the US healthcare system more responsive to the needs of amputees and individuals with limb-threatening conditions. He’s been a patient in that system since 1969, when he lost his right leg below the knee in Vietnam to a combat injury. Kerrey has lived through fifty years of innovation and reform in prosthetic technology, and he’s helping to build the next generation of sockets as chairman of the board for Xtremity, a Denver-based startup.
With May serving as both Military Appreciation Month and Mobility Awareness Month, we wanted to hear Kerrey’s reflections about limb care for veterans, access to prosthetic devices, and innovations in socket technology, with a few political opinions sprinkled in here and there. The conversation is edited for clarity and length.
You’ve seen a lot of improvement in prosthetic technology over time, yet I get the sense you still see room for plenty of futher improvement. Is that an accurate impression?
I left the hospital as an amputee in 1969, and my last surgery was in 1978. And in 1981, I ran a marathon. I ran that marathon with a SACH foot, a waistbelt, and woolen socks. People said, “Bob ran a marathon. Isn’t that great?” But 99 percent of us only want to be able to move around during our workday, get in and out of the car, and walk across the parking lot and go to the shopping center without pain. And when I say “pain,” on a one-to-ten scale I can live with a two or a three. But once it gets up to seven or eight, in that neighborhood, it’s too much. I can’t think. I can’t perform. I can’t work. And the next thing you know, I’m a relatively healthy person who should be walking, but I’m in a wheelchair instead. Simply because of the socket fit.
My first prosthesis was a large, heavy wooden leg, and the only thing that separated the wood from my skin was a woolen sock. Over time, the socks got a little heavier. Now there’s a better liner that absorbs the shock. But the same thing is true today as it was in 1969: The most important thing is to get that socket right. Any amputee will tell you that, and particularly older amputees. For them it can be a real problem, because if it hurts too much, they’re gonna be in a wheelchair.
How did the problem of diabetes-related limb loss within the veteran population come to your attention?
I just looked at the numbers, as a private citizen. It’s massively frustrating. I think the statistic is that 50 percent more veterans have Type 2 diabetes than in the non-veteran population. For a time it was twice as many. It’s a big number. And it’s preventable—not in 100 percent of the cases, but in a significant fraction of the cases.
I get worked up over it because I think the Department of Defense and Department of Veterans Affairs are the two largest healthcare systems in the country. They’ve got the same electronic medical records; I was involved in helping get that done. And I thought that was magically going to produce better correlation between the two systems. The handoff from the DOD [which provides healthcare to active-duty service members] to the VA [which cares for discharged members] should not be as difficult as it is. Part of the problem is that they report to different committees on the Hill. And another problem is the military often confuses fitness with health, when they are not the same thing. When I was a Navy SEAL, they wanted to know: “Can you do 50 pullups?” And maybe you can do 50 pullups, but maybe you also have A1C levels that are so elevated that you’re prediabetic.
Having been active-duty military for three wonderful years, one thing I know is that whatever the commander tells me to do, I’ll do it. I follow the orders. So I’d love to see the Secretary of Defense just order people in the military to learn how to eat healthy. Because it begins with that. When you leave the military, you’re not going to be prediabetic, and neither is your family. You’re gonna learn how to prepare food, how to eat healthy, how to keep your blood-sugar levels down, and still be able to perform all of your duties. We’re going to teach you so that when you leave the military, you have more habits of healthy living than when you came in. I wouldn’t make it voluntary. You go to your class and get approved so you know how to eat healthy.
A growing fraction of the amputees I see at the VA are there because of circulatory diseases. I don’t know what the percentages are. Can I offer a political opinion?
Absolutely. I’d love to hear it.
Okay. I think the best health care program in America is renal dialysis. Why? Because if you have a kidney that needs dialysis, you don’t have to prove anything to get the treatment. You don’t have to prove that you’re old enough, you don’t have to prove that you’re employed and you have insurance, you don’t have to prove that you’re poor and promise to stay poor. All you have to do is prove that you got a medical diagnosis of kidney malfunction, and you get the dialysis.
I think it would only cost maybe $2 billion a year to have prosthetics funded on the same basis. So if you’ve got an amputation and you need a prosthesis, you no longer have to file insurance claims or go to the VA or whatever. It’s paid for regardless of your age, regardless of your income. I know I’m becoming a windbag, demonstrating that I haven’t been out of politics that long. But maybe the most painful political experience I had as governor and senator was visiting people who’d suffered a traumatic injury. Lots of times it was farm injuries, because I represented Nebraska. And many, many times I would be with individuals who would tell me they don’t have enough insurance to get a prosthesis. And I’m sitting there with the person, and my prosthetics are paid for because I have a military-connected disability. Meanwhile they’re in their 40s, they have lousy insurance, they’re trying to figure out how to scrape together the money—and if they’re young people with cancer, now they need a new prosthesis every six or eight months.
So I would put prosthetics in the same category as renal dialysis: Prove to me that you’re missing a leg, which shouldn’t be too hard, and we’ll all share the cost of buying you a prosthesis. I believe those of us who are covered—particularly those who are already covered under federal law, as I am—should be advocating for this.
That is such an important issue. I hear from my readers all the time that the coverage rules are hard to understand, the systems are fraught with roadblocks and obstacles.
Adding it to renal dialysis could not be more simple. The law would only be about two sentences long. All you need to do is ask Senator Windbag: Will you support adding prosthetics to Medicare and funding it the same way the renal dialysis program works?
Do you think the timing might be right for something like that? There has been amazing progress this legislative session at the state level. New Mexico passed a law, Arkansas passed a law, Colorado is trying to finalize a law. These bills don’t go as far as what you’re saying, but they do prevent insurers from denying so many claims on the basis of medical necessity.
Maybe the timing is right. But don’t leave it to the states, for God’s sake. One of the great things about the renal dialysis program is that if you’re living in Minnesota and you decide to move down to Texas where it’s warm, you don’t have to worry about having less coverage in Texas than you do in Minnesota. It’s far better to have a national program. It’s a two-sentence piece of legislation that adds prosthetics to the renal dialysis program. This is not that difficult to me.
How did you get connected with Xtremity?
I got a call from a very good friend of mine, Rick Klausner, who was the head of the National Cancer Institute. And Rick said, “You really ought to come out here to Denver and look at what these guys are doing with prosthetic sockets.” He’s not an amputee, so he wanted to know what I thought.
I was impressed by two things they do at Xtremity. The first thing they do is a very quick fit. I went out there, and they actually fit me that day. The turnaround was basically 24 hours. If you’re dealing with an amputation, one of the big challenges is the time it takes to get a leg fit. And it’s no fault of the prosthetist, it just takes time. You do a check socket, you come in for a fitting, you come back in for a final fit. Even if you live relatively close, it could take a fair amount of time.
So I was impressed with the speed of the process. The second thing I was impressed with was the polymer. It’s hard, but it’s reformable, meaning the adjustments are relatively easy. It’s a change in the way the prosthetic is made, and it does something that is really important and often misunderstood by professionals in this space. It reduces pain. Maybe the most frequent question that amputees get asked by their prosthetist is: “Where does it hurt?” And it’s impossible to really answer the question. It’s largely guesswork. You can grind it out and maybe push it a little bit. With the reformable polymer, you just heat it up and you’re back in business. So I was very impressed with that.
I want to touch on one other thing that’s really important, and that’s the mental health side of this. My daughter just survived breast cancer, and she got a bilateral mastectomy. And I was able to say to her, “Sweetheart, when I was injured, it was a loss. And you’ve got to be able to express an understanding of that loss. It’s a big thing. It’s okay to complain about it. It’s okay to scream. The screaming won’t do any good, but dealing with the loss is really important. Men in particular aren’t always very good at that. And my own view of loss is, you cannot get through it without friends. The difference between getting through something and not getting through it might be whether you have people who will be there with you. And if you believe that’s the case, then you’ve got to be a friend to somebody else who’s hurting and needs you when they’re dealing with a loss.