Health Care Reform...I want to believe...

The debate is heating up. Every night there is news of some congressman or woman getting jeered and booed over the health care debate. I'm not sure where I fall but here's what I learned over the last year and a half.

I have read many stories about amputees denied C-legs. In nearly every case that dealt with private insurance companies, the amputee was ultimately provided a C-leg. Usually the amputee had to provide proof of need, proof of ability, scientific evidence that the C-leg performed better than the alternative and sometimes they had to drag in a Congressman or State Insurance Commissioner, but in most cases with private insurance, the amputee finally won their case.

My case is different because I'm not dealing with private insurance. I'm dealing with government at the state level. In other words, I see the future and it ain't pretty! I already have government run insurance. A Health Care Commission appointed by the governor decides my fate. They have no obligation to respond to my letters, my requests, my evidence, my Doctor, my proof. They pawn this off on the insurance company that manages the state contract. The neutered insurance company conveys the one syllable communication (NO) but they're powerless puppets of the HCC and they admit as much by saying, "The state calls the shots. They control the purse strings."

The State Insurance Commissioner, the only person with the courtesy to reply, said that they have no jurisdiction over the government run Health Care Commission, and besides, the Insurance Commissioner is also a member of the Health Care Commission. Uh-oh! Fox in the henhouse!

Another State government committee decides that providing coverage for my health care needs will cost the government too much money, so it will not be covered this year or next or the next year unless something gives.

So...How do I feel about government run health care? At the moment, not good. Not good at all. I have ample evidence that they don't provide and they don't respond to need or to evidence based logic.

Still, the "government" provides C-legs for war veterans, Medicare and Medicaid recipients. The State provides for Medicaid recipients too. State Employees just fall between the cracks.

On the flip side, I also don't understand why a computerised knee with a plastic and carbon fiber socket costs more than a car. Why does a bilateral above knee amputee have to come up with $120,000 to walk? A familiar cry is, "Arms and legs are not a luxury!" Then why are prosthetics priced like luxury items? Why are prosthetics priced out of the reach of the very people who need them? Are the materials, the technology really that expensive? I'm sure it cost a lot to research and develop the C-leg, but it's been on the market for nearly 10 years. The R&D costs haven't been recovered yet?

Does the market need more competition? A resounding YES is the obvious answer. Functional, affordable high quality prosthetics. What a novel idea.

Lots to think about...

State Gives Employee the Finger: No Leg

Former Governor Sebelius, now the US Health and Human Services Secretary is making the rounds trying to sell the proposed health care plan put forth by the Obama administration. Now - I'll be the first to admit that our health care system is in a sorry state. I have personally experienced it, ironically, at the hands of Kathleen Sebelius.

For sheer entertainment value, watch the video below and listen carefully to her words. "Excuse me, excuse me. The federal employee health system would stay in place, as would other employer based coverage." Then she waves the microphone around as if to say, "Are you people clueless? Why are all these people booing me?"

I'll tell you why, Secretary Sebelius - because you aren't getting it. Where were you when for over a year, you and your Health Care-less Commission received letters from all over the US and the world asking to provide the same prosthetic standard of care to your State Employees that you provide for the nonworking Kansans? Why did you never respond to a single letter, not even a courtesy call? Why, after all those letters, was the contract language changed to become more arbitrary, exclusive, even denying State Employee amputees anything that might provide "comfort and convenience?" All I asked for, after losing my leg, was the prosthesis that my Doctor prescribed. The leg that would allow me to do my job properly. The leg that our service men and women use, the same old leg that's been around for over 10 years that anyone on Medicaid can get.

What I got instead was the finger.

That's why people are booing, Kathleen. Actions speak louder than your hollow words. I've had a taste of your state employee health system and if all you're offering is more of the same disparity, then you can keep it.

Here's how it's done...

Here's a story about a nice man in Florida who worked for the city for more than 25 years. A little over a year ago, he lost his leg due to an infection. All he wanted to do after that was go back to work, but his city insurance only covered 1/10th of the cost of a prosthetic leg. He spent over a year asking for a leg. He said that the 10 months not working were "tougher than the surgery."

The prosthetic company gave him a leg made out of used parts but it didn't work very well but he didn't mind too much because he could at least return to work.

Then, compassionate people, people who "put themselves in his shoes" stepped up to the plate and found a solution. They worked with the City, looked into the cost for the City and found that to provide this dedicated worker with the proper prosthetic leg, the one prescribed for him, would cost so little that they increased the coverage and this nice man got the proper leg. He is thrilled to be walking and back to work. "It's like going from a Yugo to a Cadillac," he said of his new leg. "I don't even think. I just go."

In stark contrast we have the State of KS Health Care-less Commission, KS Health Policy Authority and Employee Advisory Committee who, after 18 months of wrangling, claim that it will cost the state a half-million dollars a year to provide complete prosthetic coverage for state employees. They're still dodging prosthetic parity and continue to deny "comfort and convenience" for state employee amputees. They say, "You'll get a Yugo and like it" or "You can have a Cadillac without the motor and by the way, your insurance premiums are going to increase next year."

Well, good for you, City of St. Petersburg! Good for you. You found what all the other states that have passed prosthetic parity into law - that it costs literally pennies to keep people active, working and healthy.

A Hopeful Story

Here's an inspirational story about a young man, who after losing both legs, realized that other amputees, especially children, aren't getting adequate insurance coverage. When I read about the 6 year old who was denied an adequate prosthetic - geez - how many stories before we say, "Enough is enough!"? How do these people sleep at night?

A relevant and powerful editorial

A friend of mine, a professional woman and probably one of the most intelligent and logical thinkers that I've ever had the privilege of knowing, weighed in with her opinion about what's wrong with "health-I-could-care-less" today. She has given me permission to post part of her message here:

The whole political system is broken. This isn't about Democrat vs Republican. It's about entitlement vs. greed and outright theft. Both are wrong. Neither one sits well with me. Neither one works for me. Is it somehow inherently better or more noble to be raped by the private health care sector interests than by the government? I don't think so. They're both wrong, and if you actually are a productive member of society in any way you're going to be raped by both. That's what is so wrong, and it's just beginning to dawn on people. It's not just health care. It's everything, and the answer does not lie on either side of the aisle. I don't know who it is, but there's a real Messiah out there somewhere. Whoever he or she is needs to truly speak to and look after the interests of real Americans. Americans who work hard, pay their bills, send their loved ones to war, mind their own damned business and do good works within their sphere. We ARE the majority, but no one is representing us. Not only are we the majority, we are the heart beat of the system and no one seems to get that. The real Messiah will have no agenda beyond the welfare of America, which is as simple as the welfare of the core of its citizens. It's that simple.

Signed,

"A member of the no longer silent majority"

Urgent - Connecticut citizens, ACT NOW!

If you are a citizen of Connecticut go here to get what you need to contact your state legislators. Ask them to override the Governor Rell's veto of HB 5021. Write your governor and ask her to reconsider. Your health and independence are at stake.

Honestly - how incredibly short sighted. Here we have states in dire financial straights, dependent on income tax and yet the governor vetoes a bill that keeps people working, independent and off state Medicaid.

The clock is ticking - turn the tide in your state! One little voice in Kansas is rooting for you!

Virginia Governor Signs Parity Bill and Personal Update

This just in from the Amputee Coalition of America:

Richmond, VA, June 17, 2009 – A Virginia bill designed to ensure fair insurance coverage for artificial arms and legs was signed into law by Governor Tim Kaine Tuesday.

The bill, known as the Prosthetic Parity Act, requires insurers that cover prosthetic care to provide meaningful coverage for prosthetic devices and better care for people with limb loss by creating a consistent standard for prosthetic benefits. This removes special caps and exemptions placed on prosthetic and orthopedic care that made these very basic services cost prohibitive for many individuals. Because of its potential to help people with limb loss keep their jobs, take care of their families, and live healthy, active lives, the bill was strongly supported by the Amputee Coalition of America, the premier nonprofit organization working on behalf of people with limb loss.

“Unfortunately, many amputees have nightmarish stories of fighting with insurance companies to try to get the prosthetic devices they need to simply work and live,” explained Kendra Calhoun, president and CEO of the Amputee Coalition. “People pay their monthly health insurance premiums and expect their coverage to take care of catastrophic situations like losing a limb. This is the very reason people purchase health insurance.”

Senate Bill 1116 was introduced by Senator Patricia Ticer (D) with delegates John O’Bannon (D) and Lee Ware (R) sponsoring in the House. It was passed in the Senate by a vote of 33-7 on February 3. It was then passed in the House unanimously, 99-0, on February 24. Sponsorship of the bills was bipartisan.

When Susan Bailey became infected with E. coli bacteria that ultimately resulted in the amputation of both her legs above the knee in 2007 at the age of 23, Virginia didn’t have a law ensuring that she would receive meaningful prosthetic care. Because no law was in place, she ran into problems with her insurance company when she wasn’t able to get the prosthetic legs her doctor recommended. As a mother of two, Susan was given above the knee prostheses that didn’t allow her to walk up and down stairs, let alone keep up with her children. Susan had been paying her insurance premiums and expected to be covered adequately to allow her to get her mobility back.

“Thanks to the leadership of the Virginia General Assembly and Governor Kaine, people with limb loss in Virginia can now get the care they need to get back to work and live independent, productive lives,” said Morgan Sheets, the national advocacy director for the Amputee Coalition. “Spread across the insurance pool, the cost of prosthetic care is less than a dollar per month. Because of the lack of productivity caused by inadequate prosthetic care, the cost to the healthcare system in the long run of not providing prosthetic care far exceeds that of providing it.”

**************

True, true. What does one do in the face of such logic? The right thing or continue to turn a blind eye? If you are a member of the KS Health Care Commission, KHPA or a KS Legislator - you continue to ignore the issue and hope it will go away.

So...a lot of people have been asking how I am since paying half my take home salary in 2008 for medical expenses. I'm financially poorer, physically and mentally richer and immeasurably more savvy about "health-I-could-care-less" insurance.

I got a new socket a few months ago because my residual limb bulked up when I started walking with the C-leg. I'm trying out a new suspension system. When it's good, it's SO good. Quick, responsive - I almost feel like my old BK self. Funny how your confidence soars on these days. I feel strong and invincible. Then there are days that I can't explain - I just can't seem to get the socket right, I lose suspension and am constantly fighting the thing - like a grocery cart with a bad wheel. However, the good days are starting to outnumber the bad and compared to where I was a year ago, it's remarkable. With the new socket and suspension system, I don't lose circulation in my residual limb, don't have the painful muscle cramping and now I can walk all the way across campus and back. It's been nearly two years since the accident. My inability to walk properly that first year thanks to the "basic" prosthetic provided, cost me a lot.

Now I discover that I have significant osteoporosis in my remaining femur from lack of proper weightbearing. The rest of my bones are in great shape, but my right femur is pretty scary looking. Once again, this points out the importance of the C-leg which has been scientifically proven to reduce falls and increase mobility. I will do everything in my power to rehab this bone, since it's the only joint left that's keeping me mobile, on two feet, but imagine where I would be if I were limited to the "basic" prosthesis provided to State Employees? Probably in the hospital with a hip fracture and then to a wheelchair with costly, secondary physical complications. It's crazy making, isn't it?

If I were a pony, or an elephant, or a lizard...

If I had watched this video a year ago, like most people I would have thought, "Wow...isn't that something?! It's a miracle how far prosthetics have come!" When I watch it now, I just chuckle and shake my head. First, the C-leg microprocessor technology is over 10 years old. Second, every time the patient says how comfortable he is with the C-leg I cringe! Don't let them hear you say that it's comfortable or worse yet, convenient! Comfort and convenience are exclusions here. Third, I don't know what planet they live on, but the reporter says, "Insurance companies are now covering the cost." 'Eh... no...

I heard about a couple of other cases here that are so outrageous it just makes a person question their sanity. What makes human beings so inspired when they see an animal with a prosthesis, like Molly the Pony or a baby elephant with a prosthesis, yet we deny amputees the dignity of a limb? I've become so jaded after hearing story after story of people who are denied a medically prescribed prosthesis that I envy Molly and Chhouk - they receive better prosthetic care than a lot of people. For example, one story I heard was about a person who lost their leg at the ankle. They received a prosthesis but complications developed and the leg had to be amputated again, this time right below the knee. After recovering from the 2nd amputation, the insurance company denied a new prosthesis because 2 years hadn't passed since receiving the 1st prosthesis! Nevermind the facts - that the 1st prosthesis was designed to fit the part of the leg that was amputated - denied.

Ah, if only we were lizards and could regenerate our limbs.

Waymon Tisdale Remembered

I was deeply saddened to hear the news of the death of Wayman Tisdale. He was a musician, basketball star and amputee with an incredible spirit and generous heart. After his amputation, he set up a foundation to help children and families whose prosthetics were not covered by insurance. He was a bright, shining star - a beautiful example of courage and grace.

Show Me MO!

Makes me proud to live in Missouri! MO is the 6th state to pass prosthetic parity legislation since the beginning of the year. Read about it here! Great planning too - either opt in or out of prosthetic coverage for $4.00 a year.

WOW! Parity is on the move!

While I was focused on the lost cause of KS, Texas passed prosthetic parity into law! That makes 5 states just this year! (VA, MD, AR, IA, TX) That's incredible. It's time to focus on the national parity bill and stop beating a dead horse. The Amputee Coalition of America has a nice new website for the parity campaign. Check it out here.

KS State Employees - Read this Now!

KHPA met with the EAC on March 4th to discuss adding electronic components to the State Employee Health Care Plan. Remember, KHPA does cover electronic components to State Medicaid recipients. This discussion is limited to the few State Employees that might require a prosthesis with an electronic component. You can read the memo here. When you read this memo, you'll also get a feel for the issues surrounding prosthetic parity and why we have to pass laws saying prosthetics should be covered like any other medical expense.

They have determined that it would cost the state $500,000 per year to cover electronic components for State Employee amputees. Their actual cost for my C-leg would have been $15,000 so this isn't adding up. If we use the State's predicted cost and divide it by the actual cost, we can assume that there are 33 State employee amputees that meet the qualifications for an electronic prosthesis. As far as I know I am the only squeaky wheel, because I've never heard about another State employee in this same predicament. Even so, let's pretend that there really are 33 eligible amputees employed by the state that are simultaneously prescribed and meet the requirements for an electronic prosthetic component in Year 1, costing the State $500,000. This is the predicted annual cost so in order to meet that requirement, another 33 amputees would have to show up year after year because the components last about 5 years. Catch my drift here? Those 33 would have to show up all in the first year to cost $500,000 and then what? Either another 33 show up the next year to cost the State another $500,000 or we take those figures and spread them out over 5 years for $100,000 a year. Of course, there may be costs for repairs, but we all know that there are not 33 State employee amputees clamoring for electronic components and this number is not going to multiply year after year. Bottom line? Totally bogus.


But, while we're in fantasy land, let's just say that this cost really is $500,000 a year. What would it cost the insured State employees if all the costs were passed on to them in the form of a premium hike?

There are roughly 90,000 State employees so 500/90 = $5.55 a year or 83 cents a month. Or, if we use the more realistic figure of $100,000 a year that's 9 cents a month. The insured State employees would have to pay somewhere between $0.09 - $0.83 a month to cover the cost of electronic prosthetic components for these imaginary 33 State employee amputees.

Just for fun, let's pretend I'm the only amputee in the State asking for the same prosthetic benefits that KHPA provides KS Medicaid recipients? What would I cost each and every KS State employee? The cost of my C-leg would have cost the state $15,000 and it's predicted to last 5 years so that's $3,000 per year. $3,000/90,000 employees = 3 cents per employee per year. Yes, that's what we've spent the last year arguing about - three pennies.

Premium hikes are a sore topic for KS State employees because they've been on the rise and are increasing even more next year, significantly more than $0.83 a year. Oh well, the people making these policies are KS State employees too. I doubt things will change unless a) a KS legislator steps up to the plate b) the federal prosthetic parity bill passes or c) one of these policy makers loses a limb and then comes face-to-face with the issue of parity.

Grades for KS Health Care

I have been approaching this issue with a sense of humor, often laced with a little sarcasm, but tonight I'm just weary. It's been an exceptionally long day and I think I'm not only tired but terribly disappointed with bureaucrats, administrators, senators, commissioners, governors and just people in general.

The second appeal is final. It took 69 days for them to say "no," employing the same rationale, that is, electronic components (the C-leg and anything with a battery) are excluded. No explanation why, no explanation why amputees are the only group singled out with an "electronic exclusion" just, "Because we said so." That worked with me when I was 2 years old. It doesn't now. Decisions are based on reasoning.

Despite all the BS I was fed when they got wind of the Call for Action Report, the discriminatory and insulting language regarding insurance coverage for amputees will be left in the 2010 State Employee Health Care contract. The state will continue to practice disparity by providing proper care for amputees who are State Medicaid recipients, but not for their State Employees.

We did what we were told. We contacted the benefits office, BCBS of KS, then KHPA, then the KS Health Care Commission and the Governor. We talked to Senators and Representatives. Here's the breakdown:

Congressman Dennis Moore: They gave it a good run but got nowhere. Congressman Moore has yet to co-sponsor the federal prosthetic parity bill. I'll give him an A for effort and a C for not co-sponsoring the bill. Come on - step up to the plate and make a statement!

Former Governor Sebelius: Never responded to a single letter. She is now Secretary of Health and Human Services. She gets an F for failing to respond. I thought health care was a priority of the Democrats?

BCBS of KS: Please... they just wave their hands around and say they're not responsible for anything, they just administer the contract, take your questions to KHPA, it's not us, there's nothing we can do, we just handle the paperwork. They really are "just the messenger" so it's not fair to grade them on anything except their handling of the paperwork and communication which is, frankly, dismal. They get an F for communication in writing and a B for phone communication. There are some compassionate individuals there who clearly grasp the situation, but there's nothing they can do.

KS Health Care Commission: Never responded to a single letter. They get a resounding F for not recognizing the disparity, for not being outraged that State Employees aren't getting the standard of care and for lack of simple common courtesy.

KS Health Policy Authority: Responded immediately and favorably only when there was media pressure. Presented a good case to the HCC in February to change the contract language. I'll give them a B for their effort and understanding the disparity between State Employee benefits and State Medicaid Benefits but an F for not telling me about the Employee Advisory Committee.

EAC - who is the EAC? Good question. I'm just now hearing about them. Apparently, they are responsible (according to KHPA) for recently advising HCC not to change the State Employee contract language. I can't grade them because I don't even know who they are or how they based their decision.

When it comes to health care for working amputees, the State gets an F. There is so much finger pointing and lack of accountability that it becomes impossible to sort out why they choose to neglect their State employees and who is responsible. Maybe the new governor will be more responsive.

If are a KS State employee, or an amputee that has faced similar discrimination, contact me at katmanjo@gmail.com. I'm not giving up until we end this disparity.

More State Victories!

HB 2244 was signed into law on April 6, 2009 making Arkansas the twelfth state to make prosthetic parity law! In addition, SB 1116 passed out of the Virginia House and Senate, as did SB 341 and HB 579 in Maryland, and HF 311 in Iowa.

So...Missouri, Iowa, Arkansas (a state with the word "Kansas" in it - we can dream, can't we?) and Colorado have all passed or are about to pass parity laws. Nebraska has legislation in place, Oklahoma and Kansas are still at stage zero with no one sponsoring a bill.

Prosthetics on 60 Minutes

Prosthetic advancements were featured on 60 minutes recently. These stories, while inspiring, do not expose the dirty secret, that those amputees who work, have insurance and pay taxes will not have access to modern technology. Heck, the C-leg is something like 10-15 years old now - ancient by technological standards - but still more than the Health Care Commission can wrap their head around. Until either the cost of prosthetics decrease or the parity bill passes, these kind of advanced prosthetics will not be an option for the average working stiff.

What's wrong with this picture?

State Updates

Iowa: Passed House and Senate, on its way to the Governor. Yeah!

Texas: Passed out of the House (105 yes, 35 no), on its way to the Senate. All 35 "no" votes were from Republicans who oppose the bill based on their philosophy that government shouldn't meddle in private affairs. Well, if someone had been paying attention in 2000 when insurance companies pulled a fast one it wouldn't have come to this, would it? See my previous post on mandating fairness.

Utah: Rep. HB 89 passed the House but never got a Senate vote. The bill would have affected up to 7,000 Utahns who need prosthetics. The sponsor of the bill, Rep. David Litvak (D-Salt Lake City), was told insurance companies won't offer coverage because the pool of users is too small to make it worthwhile.

Hey, "Peg"...How does that make you feel?

Think about this - the "pool of users" are the hard working, tax paying and premium paying customers of insurance companies that refuse to cover prosthetics. Prosthetics promote ABILITY. The ability to work, stay active and healthy and continue contributing to society you stupid, incredibly short-sighted pack of nincompoops! But then, we're not worth bothering with, are we? Don't these 7,000 people in Utah vote? I hope every single one of you is paying attention and make your voices heard. Gather up your friends, families and supporters and go march on the Capitol. Each one of you write a letter and have all your friends write too. "Too small to make it worthwhile?!" Utah advocates - put that phrase on your T-shirts and go make a scene!

The Missouri Prosthetic Parity Bill (HB 616) passed out of the House Health Care Policy Committee unanimously (10-0) on April 1st

It's not an April fools joke either! Amazing that these bills are consistently passing unanimously, isn't it? This bodes well for the federal bills. So, ironically, Missouri is about to make it illegal to deny coverage for prosthetics. I live in Missouri, but I work for Kansas, so I'm still stuck. But, wonderful news for amputees in Missouri that have been doing without for so long!

Is your Representative or Senator on this list?

There are two federal bills for prosthetic parity:

1. House Resolution 5615 (HR5615) sponsored by Representative Robert E. Andrews [NJ-1]with the following cosponsors:
Rep Braley, Bruce L. [IA-1] - 5/13/2008
Rep Carson, Andre [IN-7] - 4/30/2008
Rep Clay, Wm. Lacy [MO-1] - 6/18/2008
Rep Coble, Howard [NC-6] - 9/9/2008
Rep Courtney, Joe [CT-2] - 9/23/2008
Rep Diaz-Balart, Lincoln [FL-21] - 3/13/2008
Rep Diaz-Balart, Mario [FL-25] - 3/13/2008
Rep Doyle, Michael F. [PA-14] - 6/18/2008
Rep Filner, Bob [CA-51] - 5/19/2008
Rep Fortuno, Luis G. [PR] - 9/15/2008
Rep Giffords, Gabrielle [AZ-8] - 7/10/2008
Rep Grijalva, Raul M. [AZ-7] - 5/19/2008
Rep Holden, Tim [PA-17] - 11/19/2008
Rep King, Peter T. [NY-3] - 5/7/2008
Rep Lowey, Nita M. [NY-18] - 7/10/2008
Rep Maloney, Carolyn B. [NY-14] - 6/18/2008
Rep Miller, George [CA-7] - 3/13/2008
Rep Nadler, Jerrold [NY-8] - 6/18/2008
Rep Payne, Donald M. [NJ-10] - 6/12/2008
Rep Petri, Thomas E. [WI-6] - 12/9/2008
Rep Platts, Todd Russell [PA-19] - 3/13/2008
Rep Ryan, Tim [OH-17] - 10/2/2008
Rep Terry, Lee [NE-2] - 9/16/2008
Rep Tierney, John F. [MA-6] - 9/9/2008
Rep Van Hollen, Chris [MD-8] - 9/23/2008
Rep Wamp, Zach [TN-3] - 6/18/2008
Rep Waters, Maxine [CA-35] - 6/18/2008
Rep Welch, Peter [VT] - 6/18/2008

See any representatives from KS or my representative from MO on this list? Hmmm...?

The Senate bill (S.3517) was sponsored by Olympia J. Snowe [R-ME] with the following cosponsors:

Sen Casey, Robert P., Jr. [PA] - 9/25/2008
Sen Feingold, Russell D. [WI] - 9/18/2008
Sen Harkin, Tom [IA] - 9/18/2008
Sen Inouye, Daniel K. [HI] - 9/18/2008
Sen Leahy, Patrick J. [VT] - 10/2/2008
Sen Sanders, Bernard [VT] - 12/11/2008

If you don't see your Senator or Representative on this list, take action now. Call, write, email, fax, whatever you need to do. The Amputee Coalition of America Advocacy Center has some good sample letters and links at the bottom of this page.

Trying to attain normalcy...

A few weeks ago my coworker Lori and I were out and about when we spotted a security guard on a Segway. I commented how cool that would be for the disabled, that they wouldn't be in a wheelchair, looking up at everyone, that they could be at eye level, moving along smartly and feeling "normal." Wondering if there were Segways for the disabled, I ran across this article.

I didn't feel good after I read it, in fact, I felt sickened. Why? Because it's another example of limitations for the disabled. See, everyone cheers if you beat the odds, perform amazing feats, but try to blend in and just live a normal life without wearing the big blue "D" on your chest, or try to use a mobility device or prosthetic that gives you an "advantage" (ha - advantage - how funny is that?) and you can find yourself in the situation this man did.

When I was between legs, waiting to see if my knee would heal, Dave made me a decoy leg out of Pringle's cans. I found that if I wore the decoy leg and used crutches, that strangers would joke with me and my co-workers felt more comfortable because a "broken" leg looked more "normal." Without the Pringle's decoy, people would either look the other way, avoid me altogether, or, worst case scenario, the other extreme - go slack-jawed, stare, point at the offending missing limb and blurt out, "What happened there?!" If this happens to you, be sure to quickly turn around and shout out, "Where?!" This should start an interest exchange of "Where?!" "There!" "Where?!" until you look down in horror and discover that your body part is missing whereupon you shriek in horror (don't hold back!), "Oh My GOD-MY-LEG?! WHERE'S MY LEG?!" then, as dignified as possible, walk off and leave them basking in their own stupidity and ignorance.

Anyway, give the article a read when you can - it's insightful and very well written.

Breaking News About Federal Parity

Washington, DC, March 11, 2009 - On Tuesday, March 10, the Amputee Coalition of America had nearly 200 amputees and patient advocates from 34 states in Washington, D.C., to urge Congress members to support fair insurance coverage for artificial arms and legs. Their message was simple: Arms and legs are not a luxury!

These citizen lobbyists made this trip to tell lawmakers that they need their own “bailout.” Many of them have nightmarish stories of fighting with insurance companies to try to get the prosthetic devices they need to work and live.

“Insurance companies are unrealistically limiting reimbursement of prosthetic arms and legs or summarily electing not to cover them at all,” said Kendra Calhoun, Amputee Coalition president and CEO. “We intend to turn this tide, and this event is a great example of the grassroots support we have from across the country to do so. Arms and legs are not luxury items. Mobility is a serious issue for amputees who want to keep their jobs, take care of their families, and live healthy, active lives.”

Jeffrey Cain, MD, is a bilateral lower-limb amputee and a member of the Amputee Coalition’s Board of Directors and Medical Advisory Committee. Dr. Cain is an excellent example of how prosthetic devices can help amputees function in their daily lives and contribute to society rather than become dependent on it.

“Being able to have prosthetic devices means that I can take care of my patients and teach medical students,” said Dr. Cain.

Unfortunately, working people with employer-provided health insurance plans are often the ones with the biggest problems, Dr. Cain noted. “Because employer-provided insurance plans are increasingly introducing unreasonable limits and caps, if you have a job in America – if you are a hardworking member of society – you can’t afford a leg to stand on. It’s gotten that bad.”

In fact, some insurance companies are providing coverage for only one prosthesis per lifetime or eliminating coverage completely.

“Even for older adults, it is absurd to expect them to use only one prosthesis in their lifetime,” Calhoun said. “No one would expect a person to wear a single pair of shoes their entire life, and prosthetic devices should be no different.”

These types of insurance company practices pose especially grave challenges for families of children with limb loss.

Rick Castro, of Connecticut, took two of his children to the event because he wanted to try to get better prosthetic coverage for all families, including his own. Castro’s 4-year-old daughter Jennifer was born missing part of her arm below the elbow, and Castro is well aware that, as she grows, she’ll need several highly expensive prosthetic devices.

“When people find out that their insurance company doesn’t provide fair coverage for prosthetic devices, what do they do?” asked Dr. Cain. “They mortgage their homes, raid their children’s college fund, go into debt, turn to government programs for assistance, or are forced to have bake sales to try to pay for these medically necessary and often very expensive devices. That’s pretty sad, especially when they’ve paid their insurance premiums for years for this very purpose.”

David Ross, of New York City, lost part of his right hand and his right leg above the knee after he was mugged and thrown in front of a subway in 1997. He’s seen what happens when amputees have to settle for devices that are not really what they need because of the limitations in their insurance policies, and that’s what brought him to Capitol Hill.

“It’s so unfair that prosthetics are not covered by health insurance plans to the same degree that other conditions are,” Ross said. “It’s a shame that a lot of my fellow amputees who have already had to get over a traumatic accident or being born without a limb have to fight for something that should already be included in their insurance policy.”

Robert D. Doty, Jr., MD, who lost his left arm as a result of a car falling on him, has had problems with his insurance company not understanding – or not acknowledging – his prosthetic needs.

“My carrier did not want to cover a body-powered prosthesis after covering a myoelectric prosthesis,” Doty said. “The company said that one prosthesis is as good as another and that they can do the same thing, which is not true. I can’t do anything around water, liquids, chemicals or heavy machinery or do any heaving lifting with my myoelectric prosthesis without damaging it. It’s great for doing fine, precise work, but if I’m going to be doing heavy lifting or working around water or liquids, a body-powered prosthesis is better. I really need both.”

As these nearly 200 citizen lobbyists hustled from office to office, they made it clear that they want change. In a single day, they made more than 60 Senate visits and more than 100 House visits. In addition, 26 organizations, including disability rights groups and O&P [orthotic and prosthetic] professional organizations, have now signed on with the Amputee Coalition of America to help move this legislation forward.

“We are thrilled with the results of the day,” said Morgan Sheets, the Amputee Coalition’s national advocacy director. “We are already hearing from House and Senate members who are interested in co-sponsoring our bills and supporting our efforts for fair coverage of artificial arms and legs. The turnout exceeded our expectations, and the great enthusiasm of the participants has certainly encouraged us to continue this important fight for fairness.”