the amputee bill of rights

In our most recent podcast, Peggy and I share our thoughts about which amputee rights are so fundamental that they should be included in a new amp’d Amputee Bill of Rights. We talk about how this project started, the way in which we came up with the rights included in this document and gave listeners a glimpse into the reasoning behind our choices.

But what we have done so far is only version 1.0 of the Amputee Bill of Rights. In order to finalize it, we are seeking input from everyone in the limb loss / difference world. Our goal is to ultimately publish a document that has feedback from and the support of everyone with less than four complete limbs. So we are asking you – please review version 1.0 and share your thoughts with us.

How do you do that?

  1. Download the amp’d Podcast Summary (Episode 17) and review the amp’d Amputee Bill of Rights version 1.0.
  2. Let us know what you think. What did we miss? How can we improve what we’ve already got? You can reach out to us either by contacting us through our website, or by sending us an email at ampdpod@gmail.com. Either way, please include the words “Bill of Rights” in the subject line so that we can triage responses appropriately.

We look forward to your input. The deadline for submitting your comments is Friday, April 7th. We’ll publish the community-validated/created Bill of Rights the following week.

Thanks in advance for your help! We have already received lots of great comments and can’t wait to get more.

a two-fer

This week started normally. Peggy and I recorded our “standard” weekly podcast, which focused on explaining the alphabet soup of organizations whose work directly and indirectly affects people with limb loss/difference. These include entities that certify the prosthetists who treat us, accredit the facilities in which we receive that care, and devote significant time to prosthetic research and legislative initiatives.

Straightforward, right?

Then, late Monday afternoon, House Republicans released The American Health Care Act, the first step in following through on their promise to “repeal and replace” The Affordable Care Act. We read through the 120+ pages and recorded a new “special alert” podcast Tuesday evening that went live immediately afterwards. In it, we explained what The American Health Care Act would do and how it would directly affect people with limb loss/difference. We also issued a new call-out to our amp’d Activists to again reach out to their legislators to express their thoughts about this new proposal and created updated model letters for amputees and their relatives/friends to personalize and send to their Congressional representatives.

Both podcasts address issues of importance to amputees. If you’re not already subscribed to our iTunes or other podcast feeds, you can visit www.ampdpod.com to listen to them and download our Podcast Summaries. (We’ve now embedded podcast players into the site so you can listen to us without having to leave ampdpod.com.) And whether you’re an amputee yourself or a family member/friend of one, please visit the Current Issues section of our website to directly engage with your elected officials. Your voices matter. A lot. So speak.

how to speak to politicians effectively

Last week in our amp’d podcast, Peggy and I issued a call to action to the amputee community and its family/friends. We asked you to reach out to federal legislators to ensure that two key protections provided by the current health care law – (1) classification of prosthetics as Essential Health Benefits, which prevents insurers from placing annual or lifetime caps on prosthetics, and (2) prohibitions on pre-existing condition exclusions – do not get repealed as part of the heated and quickly-evolving healthcare debate on Capitol Hill. As part of that effort, we created a new “Amputee Activism” section of our website, along with a tool designed to help you develop your skills as an amp’d activist.

In our newest podcast, we now walk through that tool step-by-step, showing you how to professionally and powerfully speak to your Representative and Senators about these two important issues. The debate in Congress is happening right now! If you wait to make your voice heard, it may be too late. So check out the latest amp’d, learn how to become an effective activist for the entire limb loss/difference community, and reach out to your elected officials immediately to ensure that they #DontExcludeAmputees.

 

#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.

  *   *   *

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

big changes loom: what you can do!

It’s a big week for lower limb amputees. The Medicare contractors who published the draft rule affecting (1 ) how amputees receive clinical care, (2) which prosthetic components Medicare will cover, and (3) coding of different prosthetic devices are holding a public hearing tomorrow. In addition, comments in response to this proposed rule are due on Monday, August 31st. If you’re reading this saying, “I’m not on Medicare, so this doesn’t affect me,” think again. Medicare’s coverage requirements form the basis of every major private insurance company’s approach to coverage, so if these changes get implemented, your insurance company will likely adopt them within 12 months!

For the lowdown on what the amputee community has accomplished so far, what’s happening over the next 6 days, and what you can do to make your voice heard, listen to our new Amp’d podcast, fresh off the aural press.