Come Together

Next month I will reach the 20th anniversary of the day I walked into the middle of a busy road to assist a stranded motorist. Crushed between two cars – and without any memory of the accident itself – I awoke in ICU without my left leg. This defining event in my life is something I have come to embrace as an undesired but nevertheless important gift.

And today, just hours after the Bataan Death March of election cycles has come to a close, I believe more than ever before that these experiences offer an opportunity to try to pull together what sometimes feel like the irreparably tearing seams of U.S. society.

Life with one limb has taught me that overcoming adversity is never truly a solo act. For all of my belief – especially at 27 – that I and I alone controlled my own destiny, limb loss showed me how much more I could accomplish when supported by others. Family, health care providers, other amputees – all helped me reclaim both physical and mental pieces of myself. Literally and figuratively, they reconstructed me.

For this to happen, we needed to understand – really understand – each other. We accomplished this by focusing on our common areas of understanding. We built on them, despite the fact that we often had little to nothing in common politically or philosophically. And it didn’t matter. We looked for shared values and reveled in them: helping other people; the importance of family; or even something as benign as a shared love of football (American and European).

Many people I have known for years voted for a different candidate than I did. They feel differently about the United States in 2016 than I do. And yet, I have sat down at a table for a drink with them and had adult discussions about the topic. We have agreed to disagree about certain issues, shaking our heads at each other with a smile as we unsuccessfully tried to push each other towards an alternative viewpoint. And always, we came back to our shared experiences, the things we had in common that transcended whether our view of the world was “red” or “blue”.

I recently had a fascinating political discussion with a close friend who gathers his news from media outlets quite different from the ones I rely on. It eventually became clear that the gulf separating us as we talked about the election arose from the fact that we didn’t even have a common set of facts we could agree upon as a starting point. But the conversation never devolved into shouting or finger-pointing. There were no awkward silences or moments of unspoken reproach – just mutual bemusement at the “same planet/different worlds” nature of this specific aspect of our relationship. We remain good friends today, and there are few people I trust and respect more, our political differences notwithstanding.

Unfortunately, that phenomenon seems to be largely absent from most public political discourse. It feels like we utterly lost key core principles – civility, respect for opposing points of view – during this election cycle.

While returning from a business trip to Holland last month, I got pulled aside (surprise) for a special security screening thanks to my prosthesis. The security official spoke excellent English and asked me my opinion of the pending election. I gave him my answer and he shook his head gravely: “We don’t understand why the candidates have to get so nasty. Disagree, yes. But do it respectfully.”

I have sat in a hospital bed staring at the space where my leg used to be, uncomprehending. I have felt the void of panic and fear that comes from being utterly alone in that moment, not a soul in my world with an ounce of shared experience to offer me. But what my amputation gave me was the opportunity to meet, work with, and achieve things with a range of people I never would have even met if I had two legs.

Before my discharge I asked my health care providers, “What do I need to do?” I wanted to reclaim the entirety of my pre-accident life. Everything. They told me.

With a team around me, I did it. Four months after becoming an above-knee amputee, I was able to complete a 10K road race, wearing a prosthesis custom-fabricated for my needs by a skilled professional, my physical therapist at my side every step of the way, my wife cheering me to the finish line.

If you came away from this election as many Americans did, feeling disgust about the process, the candidates, about the people on the “other side” of the political spectrum, I encourage you to take a breath and stop for a moment. Ask yourself, “What do I need to do?” And do it.

Find someone – better yet, a group of people – to join with as you walk on a path of conscious kindness towards others. Let’s find it in our hearts to be a little nicer, a little softer, a little more respectful of everyone we interact with – especially those who may themselves have low reserves of this skill – as we move into an uncertain future. That’s how you can contribute. That’s what you have to offer. That’s what life with a disability has taught me.

Come together.

 

What Limb Loss Can Teach My Son About College

08.08.11 door opener

On September 1st, my oldest son, Max, heads off to college at Hofstra University. Given my Scotch-Irish-Welsh-English heritage, I shy away from discussions with him that my wife’s Italian upbringing encourages; talks about things like … feelings.

So rather than sit down with Max one-on-one to share these thoughts with him like a normal person, it instead strikes me as infinitely more logical to post my parental advice online for the entire world to see. Max – do with these what you will …

10. Don’t Stand in the Street

I failed to follow this basic principle 6 years after graduating college and 1 month after graduating law school. Education alone doesn’t make one smart. Enough said.

9. Ask Questions

College professors know a lot. And it is your job to pay attention to what they know. But more important, you have the opportunity to question them, to challenge them (politely).

If something doesn’t make sense, ask a question. If something strikes you as wrong, ask a question. If you think you have a new or better way of thinking about something, ask a question.

I emphasize this because when, at 27, I became an amputee, I knew nothing about living life with a “disability.” And that forced me to ask lots of questions in order to understand how I could get navigate – physically and mentally – my new reality.

But here’s the cool thing: when I asked these questions – even ones that I objectively classified as dumb – I learned something new. Over time, I was able to develop my own opinions and viewpoints about whether what I had been told was objectively correct, or whether it represented one person’s opinion or simply a long-held collective assumption. And that, my friend, is called “learning.”

8. Make Friends

It became obvious to me after my accident that we rarely accomplish anything of value all alone. I succeeded in my rehabilitation only because of everyone around me. A large team of people – your mother, our family and extended family, friends, prosthetists, physical therapists and physicians – made it possible for me to achieve my goals.

So remember that you’re not alone. Go to school and give as much of yourself as you can to other people. Be loyal. Be supportive. Be a great friend. You’ll get at least as much out of doing that as you’ll get back from them when you face challenges of your own.

7. Take Care of Yourself Physically

Pulling all-nighters, eating pizza at 2 AM and sleeping in … I did all of these things in college. Don’t repeat my mistakes.

Trust me – I’ve tried over the last 20 years to “gain” extra time during the day by sacrificing my physical well-being. It’s not worth it. And I think the effect of inactivity manifests itself much more quickly since I lost my leg than it did before. When I’ve lapsed into a sedentary lifestyle, I feel it almost immediately (especially in my lower back). Conversely, the hour I spend walking a few miles, lifting weights or swimming in the pool make a huge difference, both in terms of how much I accomplish the rest of the day, and how I feel, both physically and about myself.

You’re going to spend plenty of time sitting around doing homework, practicing your music and hanging out with your friends. But please, for the love of all that’s holy, carve out 60-90 minutes every day to do something active. (See # 3, below, for a related piece of guidance.) So make yourself an hour-long playlist of the songs you love the most, haul yourself out of bed to the fitness center and allow the music to wash over you as you work out. It’s a pretty cool feeling to look at your watch at 8:30 am, fired up by the Foo Fighters, Green Day, Biffy Clyro, and – in my case – Cheap Shots (available on iTunes and Spotify for your listening pleasure), and know that you’ve already completed the task of taking care of your body for the day.

6. Touch Base With Your Family Once a Day

McGill Family Group Text: trust me – it’ll save you the annoying, “we haven’t heard from you” phone calls. Enough said. (No – this has nothing to do with anything I learned from losing my leg. Consider it a bonus item.)

5. Find a Mentor

Following my accident, I connected with lots of different people who had survived limb loss. Their experience and insight dramatically influenced me and led me to re-evaluate what I wanted to do and ultimately did with my life. Some of those people I now only speak to once or twice a year, but those discussions still have a profound and important impact on me.

Find a professor who you like and actively work to establish a relationship that goes beyond any single class you may have with him or her. Talk about your goals, your fears and listen to what they have to offer you. The future you’re planning for yourself today  – particularly a performance-based one – is challenging. But you don’t have to face it alone: a professor who has walked that path him or herself will likely have unique perspectives that could make an enormous difference in your life.

4. Treat Everyone You Meet With Respect

Before I lost my leg, I was the smart-ass, judgmental, knows-everything college graduate who was quick to judge and dismiss others. Afterwards, I met people who shared nothing in common with me other than the fact that they too were missing a body part. And I found that they were almost all unique, interesting, helpful people who treated me with an understanding and respect that humbled me.

In college, you’ll get to meet people from all over the United States who don’t share your opinions, experiences or perhaps even your values. Treat them all with respect. We have enough divisiveness and polarization in the world today already. The only way that will ever change is one person at a time. You can (and will) make a difference.

3. Respect Your Time

Following my accident, the rehabilitation process forced me into a defined routine. I had blocks of time spent at physical therapy, blocks of time at the prosthetist’s office and blocks of time at home. I only had “x” amount of time to get things done within each of those slots, so I tended to work intensely for short bursts of time. In that way, my day became a series of short (60 minutes) but hard sprints, followed by quick breaks (10 mins).

If you’re studying 18 hours a day or 2 hours a day while at school, you’re doing something wrong. College isn’t just about studying, nor is it just about hanging out and fitting in some classes between marathon ping-pong tournaments.

To find the right balance, you have to relentlessly schedule your days and always respect that schedule. There are only so many hours in a week. People who are successful figure out how to manage those hours more effectively than those who are not.

2. Take Risks

Over the last decade, there are three things I’ve done that really stand out. The first was when I hiked up and down a small mountain in Arizona. The second was last year, when an organization I volunteer for committed to getting 100,000 signatures on a petition to protect amputees’ access to prosthetics. The third was a few weeks ago, when I spent a few hours navigating an up-and-down trail in Alberta, Canada.

All of these activities took me way outside my comfort zone. In each instance, willfully navigating into into a zone of personal discomfort and working through it made them memorable, positive experiences.

Over the next 4 years, you can sit comfortably in the areas you excel at and rarely move outside them. Or you can take a poetry class, join that club you’re interested in, or start something new on campus that doesn’t exist today. I promise you, it’s the risks you take that you’ll remember and look back on with pride.

Oh – and the bonus?

The risks of “failing” at these things while in college are almost nonexistent. College is the one place you can fail at this without the consequences having a profound impact on your life. So take advantage of the opportunity.

1. Live With a Sense of Urgency

The biggest gift I got from my accident was the stark reminder that the line separating the here and now from oblivion is much thinner than you think. One minute I was safely in a car with your mother; the next I was lying in the middle of a road, my body ripped apart with EMT’s triaging me as beyond the point of no return.

While that sounds grim, it actually freed me. Instead of staying at a job that seemed like “the right thing” to do and flipping my “life and career” switch onto autopilot, I became focused on finding opportunities and experiences that would make a difference, both to me and other people.

In some ways, you’re already way ahead of where I was at your age. You know what you want to do and you love doing it. You can spend the next four years working towards a very specific goal that you’ve already identified before you’ve hit 20. And you have a gift for connecting with other people that will serve you well on that journey.

But never take anything for granted. Treat every opportunity like it could be the big break you need. Treat every show you play like it’s the one where a single video of you and/or your band could go viral. Stay in the moment.

Don’t spend your life worrying about all the things you can’t control and that could happen to you. Aim for the target and launch yourself forward without hesitation or reservation. We only get to go on this ride one time. Make. It Count.

And have fun.

I couldn’t be prouder of you. Now, as a former boss once told me, “Go out there and kill it.”

There Has to Be a Better Way

TSA & Prosthetics

As I have previously documented, Chicago’s O’Hare Airport is not my favorite. (Honorable Mention in my Worst Airports for Amputees list. What is it that could possibly rouse me from my nearly 9-month less is more typing slumber? Chicago’s O’Hare Airport, August 2016 version.

I walked into O’Hare’s Terminal 3 this past Tuesday and approached the security line, electronic boarding pass in hand. I expertly slipped off my belt while retrieving my small plastic bag of liquids from my suitcase, placing them together in a bin. Almost simultaneously, I flipped open my satchel and extracted my computer, placing it into a box of its own. I was in full-on travel-ninja mode.

I stepped up to the body scanner, alerted the TSA official that I have a prosthetic left leg, and placed my hands over my head. I walked out and immediately quarantined myself next to the machine that I knew the TSA agents would have to use to test the swabs they would rub against my prosthesis and hands.

A somewhat pleasant, roundish TSA agent made his way to me and queried as to the reason for my presence in front of him. I explained the situation and lifted my pant leg so that he could more easily swab the prosthesis.

“You’ve been through this before,” Agent Round commented as he knelt down to take the sample. He placed it in the machine.

And it set off an alarm for the presence of a potentially dangerous substance.

Now, this has happened to me on more than one occasion. The first time was at JFK several years ago. After the initial positive result, TSA agents checked my suitcase. They inserted the swab into the machine and it tripped again. They pulled every individual item out of my suitcase and swabbed a third time. The machine issued yet another alert.

Ultimately, very large men with short-sleeved polo shirts indicating that they were explosives efforts materialized in front of me. After talking to me for 30 seconds, the lead agent peered at the offending machine and said, “Hey, this is missing its O-ring – it’ll always alarm if it’s missing the O-ring!” A quick apology followed by a perfunctory private screening sent me on my way.

The next time was at the Orlando airport. With the previous experience etched into my mind, I asked the TSA agent to run the triggering swab in a second machine to verify whether the alarm was actually linked to my luggage or constituted a mechanical malfunction of the testing equipment. This incredibly helpful man simply told me to walk on through, sharing his opinion that it “was definitely” the machine and not explosives strapped to or hidden in my prosthesis. Somewhat dumbstruck, I proceeded to my gate, but not before having an extensive internal monologue about whether I should insist that he screen me again just on principle.

Now, at O’Hare with Agent Round calling over a superior to figure out what to do, I suggested that perhaps they could swab me again and run the test from another machine.

“This has happened to you before?” asked Agent Round.

“Yes – I don’t want to overstep here, but I can tell you it’s probably the machine.”

“It probably is the machine,” he agreed.

But he ignored my entreaty for a new test, instead directing me to a different area, handing me off to a taller, less round TSA agent. Agent Taller informed me that we would have to wait for a third TSA agent to meet with me. In the meantime, a female agent opened up my suitcase and swabbed everything in it, placing the sample into a different machine, where it returned a clean result.

“I’m telling you,” I said to Agent Taller as soon as my luggage failed to alarm, “it’s most likely an issue with the first machine. It would be great if you could swab me and run the test again on this one.” Agent Taller stared blankly at me before grabbing a giant, standing fan, and turning it on so that he could stand in front of it. I took this to mean that we were both going to be there for a while.

I don’t have a major issue standing for extended periods of time. But as I waited for Agent Missing to appear and ruminated on my situation, I thought, “They know I’m an above-knee amputee. But they’ve never asked me if I’m o.k. standing up; they’ve never offered me a chair; and they’ve told me we have to wait until Agent Missing is here, which, by all objective signs, does not appear to be an imminent event.” And, confident that I was not a terrorist, I started a slow, long burn with every passing minute. I knew the first machine was faulty; I knew that a second test would confirm that fact; and I fumed that even though I would surely turn down the offer of a chair, no one had the presence of mind to ask me about it.

After roughly 5 minutes, Agent Missing came out of a small office. “The screening rooms are all full,” he commented, as he walked me towards said screening rooms, Agent Taller in tow with my luggage. (The screening rooms, incidentally, were not all full.)

When the door closed, Agent Missing looked at Agent Taller and said, “Tell me what happened here. Did he alarm after you checked the prosthesis and his hands?”

“Yes,” Agent Taller replied.

“No,” I interjected. “It alarmed after the prosthesis – my hands were never checked.” Agent Missing did not appear happy to be hearing from me. He looked back at Agent Taller.

“Did you check the prosthesis and his shoes?” he asked.

“Well, I wasn’t the one doing it,” said Agent Taller, now realizing that, in fact, he hadn’t performed a single test on me himself.

Agent Missing looked back at me, annoyed, waiting for my input. “I honestly don’t know whether he swabbed the shoe or not,” I said. “I wasn’t really paying attention.”

“Go get him,” ordered Agent Missing. “I can’t do anything until I know what happened.” Agent Taller scurried out, soon returning with Agent Rounder, who confirmed that he had swabbed my shoes.

Armed with this knowledge, Agent Missing proceeded to perform a comprehensive pat-down of my back and front, complete with all TSA-required warnings about “back of the hands” and “sensitive areas,” He then swabbed his gloves thoroughly, placed the swab in a machine sitting in the screening room, and watched it turn up a negative result. “You can go,” he said.

As I reassembled my luggage, I pondered all of the preceding events, repeatedly coming back to the same simple question: why couldn’t Agent Round or Taller have done the secondary pat-down and test immediately after the first false positive? At first, I thought the likely answer would be something along the lines of, “Once a machine alarms, we can’t just let someone continue through even if a subsequent test on a different machine yields a negative result. After all, what if the second machine is the one with a problem?” But upon further analysis, that doesn’t really make sense – Agent Missing implicitly concluded that Machine 2 trumped Machine 1 after performing a full body pat-down.

I’m not quick to pile onto TSA. Nine times out of ten, my interactions with agents across the U.S. are downright cordial and complete non-events. But whenever the unusual happens, the internal logic of how I get processed and ultimately sent on my way defies easy explanation.

If Agent Missing had no information – zero – about what happened before he ever met me, what would he have done? Presumably, he would’ve performed a comprehensive pat-down and swab test to make sure it was safe to let me on a plane. If he had found out that Agent Round had swabbed my hands but not my prosthesiswhat would he have done? Full-body pat-down and swab test. If he had found out that no agent had even seen me, much less tested me, before making his acquaintance, what would he have done? I’m thinking a pat-down and swab test.

In short, I can’t think of a single reason why an amputee who trips an alarm wouldn’t immediately be tested again on a second machine in order to verify whether the “positive” result is connected to the person or to the testing equipment. And I have even less understanding of why that second test needs to occur in a private screening room as opposed to in the main security area. (Indeed, all of the other times I’ve been in a private room, agents have asked me to lower my pants so that they can examine the socket of my prosthesis. By definition, that’s the only reason why you would ever move someone who hasn’t requested it to a private room. Forcing an amputee to walk someplace private to conduct an examination that doesn’t require privacy makes no sense. In Agent Missing’s defense, perhaps he didn’t know whether he was going to need to ask me to drop my pants beforehand, but still …)

Postscript: things went downhill from there in a way that is unique to (and, sadly, regular for) O’Hare. My gate was changed from one close to the main hub of Terminal 3 all the way to the farthest reach of the “K” wing (Gate K20, anyone?). Fifteen minutes before our scheduled boarding time, the gate attendant announced that our flight had been switched to the “H” wing, causing a mad scramble of all passengers to find the new, distant gate.

But don’t fear, I didn’t miss the flight. I received an email alert shortly after high-tailing it to H6 telling me it had been delayed 15 minutes, followed less than 90 seconds later by another alert saying that the flight would be delayed an hour.

God, I love O’Hare.

i don’t know why you say goodbye i say hello

As I opened my computer this morning and typed in my password, I realized that I hadn’t authored a single less is more post since September. That realization upset me. Writing this blog has always been a passion project. Every post – whether I personally loved it or not after hitting “publish” – means something to me. But I sputtered and stalled in 2015. After writing 40-45 posts a year for several years in a row, I fell off the writing wagon for large portions of the last 12 months.

As we head into 2016, I hope to return to the older pattern, posting once a week for most of the year. In the interest of getting reacquainted in the meantime, allow me to revisit 2015 with the “less is more Top 10 of 2015.”

10. The Beatles hit Spotify

Technically, this hasn’t even happened yet. But as of December 24 at 12:01 AM, the entire Beatles catalog will find its way to Spotify and other music streaming services. For those of you who dismiss this as “old music for old people,” or ask, “what’s the big deal?” allow me to share the following story.

My son, Max, had serially shrugged off every suggestion I made about the importance of listening to The Beatles. Last Christmas, armed with a few hundred dollars of iTunes gift cards, he took the plunge and bought their entire catalog. In early January he pulled me aside.

“I listened to The Beatles, everything.” He paused. “[Expletive deleted.] You were right. They’re [expletive deleted] great.”

Score 1 for the old guy.

If, like Max before this year, you’ve never “gotten” The Beatles, you have to give it a shot now. Here are the 5 albums you must start with: Help; Rubber Soul; Revolution; Sgt. Pepper’s Lonely Hearts Club Band; and Abbey Road. You’ll thank me.

9. i can still get nervous before speaking in public

MAC Public Hearing

Peggy Chenoweth and Your Humble Author at the Public Hearing

I spend so much of my professional life speaking to audiences of varying sizes that I’m largely immune to nerves. But that wasn’t the case this past August when I spoke for 6 minutes at a public hearing focusing on proposed changes to coverage, coding, and clinical care for Medicare beneficiaries. (See also, #1, below.) I haven’t been that nervous in years. Why? Because that speech, more than almost anything I’ve ever delivered, felt like it mattered.

8. college looms

The fact that in 2015 Max received his driver’s license and now has submitted applications to college is one of the great mind-benders of my adult life. The fact that 17 years have passed and he’s on the verge of starting a new phase of his life is something I still can’t fully comprehend. I can’t even write about it in a coherent way.

Anyway, it’s bizarre. And I’m happy for him but completely freaked out.

7. Amp’d ramps up

Peggy Chenoweth, my partner in crime and co-host of the Amp’d podcast, texted me two months ago. “Do you know how many people listen to our podcast?” As a proud web analytics agnostic, I quickly responded, “Nope.” When she gave me the number I couldn’t respond for a moment. The fact that for a given topic we have more than 11,000 people listening to us ramble is simultaneously thrilling and daunting.

Peggy and I have made a commitment that we’re going to try to increase our podcasts to a weekly (or near-weekly) frequency moving forward. Let me in advance apologize for the times we don’t meet this goal, because it’ll be entirely my fault and likely due to my travel schedule. But much more Amp’d to come in 2016! (In this case, more is more.)

6. Cheap Shots releases its first EP

Cheap Shots EP

Cheap Shots EP

Just as important as The Beatles catalog becoming available to streaming services was Cheap Shots’ release of its first EP in October. After losing his lead guitarist and bassist to college at the end of this summer, Max formed this new group. (He and I spent the better part of two weeks in Aruba tossing potential new band names around. Discarded names included Illysium and Kooster’s Last Stand, among roughly 830 others.)

Cheap Shots has played regularly through the fall and into the early winter, including a stellar gig at Webster Hall in New York City right before Halloween. The EP, The Things That Keep Me Up Late, is a blistering set of melodic pop-punk/rock tunes with a gorgeous acoustic ballad (“One More May”) thrown in for good measure. If you’re unwilling to submerge yourself in the Beatles discography, then commit to Cheap Shots instead. Actually – commit to them either way. If you want to hear soaring melodies and poignant lyrics that come right from Max’s heart, you’ll love Cheap Shots.

5. everything is impermanent

Back in March I wrote about the unexpected death of Phil Kreuter, my friend and the physical therapist who trained me to walk again after I lost my leg. Phil wasn’t old – only in his mid-50’s – but suffered a massive stroke that led to his death shortly thereafter. It shouldn’t take the passing of important people in my life or the near-misses in my own to remind me just how important it is to respect the time we do have on this planet with the people around us. But invariably, it does.

Be aware. Don’t sleepwalk through everything. We only get to climb on this roller coaster once, so enjoy the ride.

4. i have 3 amazing kids

In July, Cara unexpectedly wound up in the hospital for a week while we were in Aruba. It was a serious situation – she was admitted to the ICU, initially – and I suddenly had to spend the majority of my time in a foreign hospital. While she responded to treatment quickly and got out with enough time to enjoy the second week of our vacation, I had to depend on all of my kids in ways none of us could have planned for.

They were all, in their own ways, amazing. When everything around them was going to hell, they supported each other, me and Cara. I couldn’t have gotten through that week without them there. I don’t remember a lot of what happened over those 5 days, but I distinctly recall sitting with my kids around a dinner table and telling them how proud I was. “When the chips are down, families are supposed to pull together and look out for each other, no matter what,” I said. They did that and then some. Thanks Max, Jackson and Caroline!

3. your humble author cries

Eastman Theater

Eastman Theater

I’m not particularly emotional. But earlier this month, Max performed as a member of New York’s All-State Chorus. This is an honor afforded to less than 300 students in the entire state, all of whom qualify based on a formal vocal audition. As I sat in the packed Eastman Theater in Rochester and listened to the songs, I began to quietly cry.

It hit me that Max was moving on (see #8, above) to new opportunities in less than a year. I realized that while I’ll still be his father and always part of his life, I’ll be losing him, to some extent. The thought of 2:30 PM rolling around and Max not walking through the door to shoot the breeze with me about his day at school and the music he’s working on or listening to hit me hard.

In that moment I was filled with equal parts pride and sadness. Prediction: I’ll be a total mess when he leaves for college. Thank god for Skype.

2. New York’s one-limb-per-life restriction overturned for 2016

As an amputee living in New York, I found it particularly galling that amputees paying premiums for plans purchased through the state’s insurance exchange were subject to a 1-prosthesis-per-limb-per-lifetime restriction. As President of the National Association for the Advancement of Orthotics and Prosthetics (NAAOP), I helped support an effort driven largely by a friend and fellow amputee, Dan Bastian, to get that restriction changed.

First the good news: the Director of NY’s exchange added language that requires insurers to additionally cover prosthetic repairs and replacements beginning January 1, 2016. Now the bad news: it’s not clear that this language will carry over into 2017. Additionally, even though the NY House of Representatives unanimously supported a permanent legislative fix that would cover prosthetic devices whenever medically necessary, the Senate refused to bring that bill to the floor for a vote.

So there’s still work to do in NY in 2016, but at least amputees in my home state requiring prosthetic repairs or replacements during the next 12 months will get them.

1. amputees successfully thwart proposed national coverage changes

We the People Petition

We the People Petition

I won’t belabor the point since this was the subject of virtually all of my posts and Amp’d podcasts from August of this year on. Medicare’s contractors published a draft local coverage determination that would have fundamentally changed prosthetic clinical care, coding, and costs if implemented. NAAOP launched a successful campaign that led to 110,000 signatures in 30 days on a petition requesting that the White House instruct Medicare to rescind the draft document.

In October, the White House and Medicare issued joint statements saying that the proposal would be shelved for now in favor of a federal workgroup tasked with analyzing current prosthetic best practices. While we will continue to need to fight over the coming year to make sure that the workgroup possesses complete and accurate information, the decision not to implement a policy that would have returned prosthetics to an average standard of care worse than what I experienced as a new amputee in 1996 was a huge win for amputees across the United States.

It shows how powerful we can be when we speak together with one voice. Here’s hoping there’s much more of that to come in 2016.

#notaluxury: a real-world example

#notaluxury - a real-world example 09.17.15My good friend, Peggy Chenoweth, came up with the hashtag, #notaluxury, to unify social media posts about Medicare’s proposed coverage changes to lower limb prosthetics under a single concept. The idea is simple: a prosthesis allows you to perform basic that we all take for granted, none of which is a luxury. If you restrict timely access to appropriate clinical care and prosthetic components as the Medicare proposal would, even those basic activities become impossible for amputees to perform.

This past week, as I turned 46, I engaged in a project that illustrates the possibilities available to amputees with a well-fitting prosthesis. Max, Jackson and I ventured north to my parents’ home in Connecticut to help my dad stain the barn that acts as a garage, tool shed and storage area behind his home.

Applying liquid to wood doesn’t require high-performance components; only a well-fitting, comfortable prosthesis capable of supporting someone safely for a full 5-8 hours. In fact, much of that time, you’re simply standing in place on the ground or on a ladder slapping pewter grey stain onto pine planks. While that doesn’t sound like much, a closer examination reveals just how much a prosthesis matters.

The morning we started, the first step involved getting the cans of stain out of the cardboard boxes containing them. This required me to walk out of my father’s house, down three steps, and across an uneven grass lawn to the barn roughly 30 yards away. I then had to lift the steel cans out of the boxes and carry them outside so that I could apply the stain to the pine planks. When on the ground, I would walk over to where I had placed the can containing the “pewter gray” stain, bend over to place the paint brush in the liquid, and then stand back up to apply it. I walked the length of the barn in small steps, standing the entire time, to cover everything within my wingspan.

Things got more complicated with the introduction of the vertical element. I had to lift one end of a large, heavy ladder that was in the barn while Jackson hoisted the other. We walked it out of the barn, carefully navigating between wood beams and cars, which in the space of less than 50 feet took us from the cement floor of the interior to the rocks in the driveway to the uneven grass on the west side of the structure. Jackson then blocked the base of the ladder to keep it from sliding while I lifted it off the ground into a raised position against the side of the barn, rung-by-rung. I spent more than half my total stain-applying time on the ladder, climbing it – to heights that I will admit, made me grunt with anxiety, especially as the wind kicked up – and then descending so that we could move it three feet to the right and repeating the process.

When the weather turned and it began to rain, we had to carefully walk the ladder down from its upright position against the barn, carry it and the smaller ladders to the side of the barn so that they wouldn’t trip up unsuspecting visitors in the dark and bring the cans of stain back into the barn to reapply the lids.

On day two, I repeated these actions, adding in the use of a smaller ladder that I could manage alone. As the day wore on and the afternoon got late, I calculated how many times I would have to move the ladder in order to finish the job. A little less than one-half of the long side of the barn required 13 ladder moves, meaning I ascended and descended that ladder 26 times over the course of 3-4 hours, finishing as the sun crept lower in the sky and an early fall chill spread through the air.

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This description of two days of applying stain is not the most riveting thing I’ve ever written about. It’s basic, common-sense stuff. And that’s the point.

Every day, amputees around the United States, whether Medicare beneficiaries or privately insured, navigate a world that isn’t designed for them. They inevitably confront situations and conditions that challenge them. Navigating those obstacles is the difference between living a full and complete life on the one hand, and becoming home-bound on the other.

Nothing that I did over the course of two days at my father’s house qualifies me for a place on a medal podium. There’s no gold for the amputee who vacuums the stairs in his house, or the amputee who rakes the leaves in her small backyard onto a tarp, bagging them for pickup at the curb at the end of her driveway.

But the only way I can do what I did last weekend is if I have access to a comfortable, functional prosthesis. Anything that impairs my ability to receive prosthetic care in a timely fashion puts all of the activities I engaged in at risk. Unfortunately, the new proposal from Medicare creates documentation requirements that will slow down how quickly I can receive a prosthesis; it will limit my ability to get the prosthesis repaired when something goes wrong. (These are mechanical devices; something always goes wrong eventually.)

For all of the pain in my lower back that resulted from standing, climbing, reaching over the two days, for all of the “How much longer?” questions from my boys, for all of the annoyance upon realizing that we’d missed a little 6-inch patch of pine 17 feet above our heads, the weekend was a fantastic family experience. The boys cracked jokes that made sense only to them while their grandfather looked on bemusedly; my mom expressed appropriate amounts of anxiety at the prospect of a one-legged guy 20 feet up on a ladder, receiving the inevitable, testosterone-driven “don’t worry” answers that belied the terror said amputee felt high above the earth; Caroline, who came up a day later with Cara, diligently applied stain at the Lilliputian level from which she sees the world and hand-drew name tags for the dinner table, garnering compliments and hugs from her grandparents.

None of that was a luxury. But I fear that in the future it will be.

early adoptors (at amputees’ expense)

early adopters (at amputees' expense)

The importance of the proposed changes to lower limb prosthetic clinical care, coverage, and coding by Medicare’s contractors has dominated the last few posts I’ve written and will do so again today. We need to turn to the more insidious – though, sadly, entirely expected – implications of the draft Local Coverage Determination.

Yesterday, I received a link to United Healthcare’s medical policy update bulletin (the no-initial-caps styling of the document belying its significance), 36 pages of scintillating minutiae about pending changes to the company’s medical policies. Medical policies, the name notwithstanding, set forth an insurance company’s coverage position for a variety of different treatments. Every major private insurer has a medical policy (or clinical policy, as some prefer to call them) describing what it covers and does not cover when it comes to lower-limb prosthetic devices. 

Page 27 of the United Healthcare bulletin is where we run into trouble:

Added coverage guidelines for vacuum pumps for residual limb volume management and moisture evacuation systems among amputees (HCPCS codes L5781 and L5782) to indicate:

The use of vacuum pumps for residual limb volume management and moisture evacuation systems among amputees is unproven and not medically necessary due to insufficient clinical evidence of safety and/or efficacy in published peer reviewed medical literature[.] (emphasis added)

United Healthcare states that this change will go into effect in just over 3 weeks, on October 1st. 

If elevated vacuum had just come to market without research proving its efficacy, if United Healthcare had reached this decision based on its own thorough review of the applicable literature, and if these components were not medically necessary, this “evidence-based” conclusion might not be so offensive. Unfortunately, none of those things are true. The only reason that United Healthcare has made this change to its coverage guidelines is because Medicare’s contractors have provided it the cover to do so without fear of reprisal.

Why do I say that? Because before the Medicare contractors’ publication of the draft Local Coverage Determination, United Healthcare covered elevated vacuum. However, once the draft proposal found its way into the public eye – including its unsupported conclusions about elevated vacuum – UHC adjusted its coverage policy to make it consistent with the draft document. 

Let’s review the timeline here: July 16 – Medicare contractors publish draft proposal; September 8 – United Healthcare publishes updated coverage guidelines; October 1 – new UHC guidelines go into effect. Total time from Medicare’s proposed changes to private payer implementation? Seventy-five days. I would hazard a guess that there are some private insurance claims for lower limb prostheses that have been stuck in prior authorization longer than that.

I’d like to tell you that this is an unanticipated, unforeseen consequence of Medicare’s draft proposal. Unfortunately, it is not.

In my August 31st post, I included a link to the formal comments I submitted to Medicare’s contractors regarding the proposed changes. In that document, I said the following:

[G]iven the fact that every proposed change related to coding in the Draft LCD has the effect of decreasing overall reimbursement for lower limb prostheses, private payers have a huge financial incentive to follow Medicare’s lead in this instance. There is no economic argument – literally none – in favor of not adopting the provisions of the LCD if you operate a private insurance company.

Thus, to act as if changes to the current LCD will somehow remain cordoned off from the broader private insurance market would be naïve, in direct conflict with historical precedent, and economically inconsistent with private payers’ short-term interests. The draft LCD does not potentially affect just amputees covered by the Medicare program; it will directly affect virtually all amputees in the United States. For people like me who depend on a prosthesis every second of every day to navigate the world, the stakes here could not be higher.

I also discussed this exact issue – elevated vacuum – in my comments:

[T]he DME MACs take the position that there is “insufficient published clinical evidence” in support of elevated vacuum suction systems, rendering them medically unnecessary.[ ] First, that is simply untrue. Plenty of peer-reviewed, published research exists supporting the efficacy of elevated vacuum. Second, the DME MACs have chosen to reach this new conclusion more than a decade after Medicare’s HCPCS Coding Workgroup created the codes describing elevated vacuum. Tens of thousands of Medicare amputees have received these devices since these codes went into effect. They have used them to control the volume of their residual limbs, to remove excess moisture, and to assist in wound healing. 

The most bizarre element of this decision is that more evidence supporting the use of elevated vacuum exists today than existed in 2003. To deny amputees the right (1) to continue to use what they have consistently and successfully used for more than a decade, and (2) to access this type of technology at all moving forward, even when clinically appropriate, defies easy explanation. This is especially true in light of the fact that the DME MACs have failed to cite any clinical evidence in support of their conclusion.

With every passing day, the draft LCD’s continued existence puts amputees insured by private insurance companies in the crosshairs, increasing the likelihood that the devices they have worn and depended on for years will suddenly be stripped away from them in the future. This is exactly why the draft policy should be rescinded immediately, not just placed “on hold” while Medicare’s contractors try to amend it.

While I’m not prone to hyperbole, I can’t overstate the significance of what’s transpiring here. Since 2003, Medicare’s contractors have approved tens of thousands of elevated vacuum devices for lower-extremity amputees because they deemed these components medically necessary. The contractors have cited to nothing – NOTHING – in their bibliography that supports the “no evidence of efficacy” conclusion regarding elevated vacuum systems. But this draft document, with all of its undisputed deficiencies, has provided United Healthcare the ammunition it needs to now erase from coverage a proven, medically-necessary solution that premium-paying lower limb amputees rely on, every step of every day.

The sad truth is that regardless of what Medicare and its contractors choose to do moving forward, the damage here has already been done. 

draft LCD comments – deadline and mine

deadline and mine 8.31.15

Today, August 31st, is the final day that you can submit comments about the DME MACs’ draft Local Coverage Determination, which would have a significant impact on lower limb prosthetic clinical care, coverage and coding. To say that this is an important issue for amputees in the United States is an understatement: I have worked full-time on nothing other than this since the beginning of July.

If you have not had the chance to comment already, please do so immediately! You need to submit them to the following email address by 5 PM ET:

DMAC_DRAFT_LCD_Comments@anthem.com

Your should address your letter to Stacey V. Brennan, M.D., FAAFP, Medical Director, DME MAC, Jurisdiction B, National Government Services, 8115 Knue Road, Indianapolis, Indiana 46250. (To be 100% accurate, the DME MAC Jurisdiction B website says that comments must be received by “close of business” tomorrow – whether that’s 5 pm ET, 5 PM CT, or 5 PM PT isn’t specified. I suggest ET as the cutoff to ensure that you don’t miss the deadline.)

If you have questions about how to draft an effective comment letter or other LCD-related questions, I’m “on call” through tomorrow. You can either submit questions to me on Twitter using “#askampd” followed by your question or on Facebook on the newly-created Amp’d podcast page (big props to Peggy Chenoweth a/k/a The Amputee Mommy and my partner on the Amp’d podcasts for putting that together). I’ll be watching both through the day and will try to answer questions as quickly as possible.

I have spent a considerable amount of time working on my own comments, which, I’m happy to report, I just completed and submitted a little after midnight. In lieu of a full-blown post either summarizing those comments or cutting and pasting them into what would be by far the longest post I’ve ever drafted on less is more, I’ve opted instead to link to a pdf for your reading pleasure, below.

If you’re in the mood for 12 pages of analysis describing why I think the proposed changes are a bad idea, then you’ll be very happy. If you’re looking for a “normal” less is more post, stay tuned. I’m coming back with lots of new stuff in the coming weeks. In the meantime, thanks to everyone who has worked so hard on this important issue over the last 45 days. It has been a remarkable summer.

McGill Comments to Draft LCD