Insurance Fairness for Amputees

S.773 in Committee

2011-11-24T08:20:00.001-06:00

Currently, S.773 is in the committee on Health, Education, Labor and Pensions. You can find all of the committee members here. If one of them represents your state, please contact them and encourage them to get this bill moving. Even if your state isn't represented here, please send the sample letter below to your state Senator:

Dear Senator __________

I am writing to ask you to support S.773, “InsuranceFairness for Amputees” which is currently in the Senate committee on Health,Education, Labor and Pensions.

Many amputees who have insurance do not receive thesame standard of care that is customary from the Veteran’s Administration,Medicare and Medicaid. Children with limb loss are often limited to “one limbfor life.” Medically necessary prosthetics are arbitrarily designated as “luxurious,deluxe, convenient or performance enhancing” and thereby denied. Familiesmortgage their homes or give up their child’s college education or retirementsavings in order to pay out of pocket for a prosthetic limb. Twenty states havepassed laws that prevent this kind of insurance discrimination but self-insuredplans covered by ERISA are exempt. S.773 would prevent this exemption and wouldprovide insurance fairness for all amputees in America.

This is not a mandate or a hand out. It is onlyfair. Prosthetic limbs would be covered like any other medical expenseaccording to the plan contract. States that have passed the insurance fairnesslaws have shown that insurance premium costs would increase by only pennies amonth.

All people with limb loss who pay for insuranceshould receive appropriate and medically necessary treatment: their arms andlegs. Prosthetics provide dignity and self-reliance. Prosthetics put peopleback to work. Returning amputees to the workforce strengthens a community andits economy.

Sincerely,

Investigative Report on Insurance Discrimination

2011-11-23T13:00:00.001-06:00

Here is the investigative report from Kansas City's KCTV5. The reporter, Stacey Cameron, did an excellent job of understanding and communicating the insurance issues that face amputees. It's time to DEMAND that our Senators get behind S.773. It's been dragging on for years with no action. Enough said.

Stay Tuned...

2011-11-22T08:44:00.001-06:00

Tonight at 10:00 CST - KCTV5 Investigative Report

Changes, Some Good - Some bad

2011-06-22T15:12:00.000-05:00

In the good news department, TSA is making changes to airport screenings for children. Hopefully, changes are on the horizon for those of us with other "issues." Until then, it's still recommended that we check in 90 minutes before flight time for our "heightened" security screening.

In the bad news department, there were changes to our health care contract. Now, the same restrictions that have been applied to prosthetic devices has been applied to orthotics. One would think that the O&P industry would be up in arms over this (no pun intended!). When chatting with a prosthetist recently, he was as frustrated as I was. These people are well educated and trained to help us get on with a normal life. We have life-long relationships with these professionals and spend hours with them compared to a few minutes with our physicians. They want to provide the best care and offer the best prosthetic for their patients. When their care is limited by inadequate insurance coverage, they can only offer sub-par or "basic" prosthetics and now orthotics. "Basic" means that you can dress yourself and use the restroom unassisted. Anything else would be considered "enhanced performance."

I gave a motivational presentation to a group of parents of children with prosthetics this last weekend. These parents want their children to be able to do anything that they want to do, and almost anything is possible now with all the prosthetic advances, but not if they are underinsured and not if the prosthetics industry - I'm talking about the makers, not the middle men and women in the O&P industry - continue to price prosthetics in the range of a couple of luxury cars or a small home.

I was also approached by a professional women, a grandmother of a little girl with a congenital arm malformation. This lovely woman was from another country and culture. Her questions to me were direct and made me reach into painful places that I didn't want to remember. "Why do so many amputees show their prosthesis instead of covering them up?" Ouch... as I stood there proudly showing off my C-leg in a pair of shorts. I explained to her that, in the past, I would have kept it covered, but now, people are more accepting. "Are you married? How long have you been married?" Clearly she wanted to know if someone would love and marry her grand-daughter. When I told her that I married once, too young, only because I thought no one would marry me - a cripple - she seemed stunned. "But you are so beautiful," she said. That gave me pause. She perceived me as beautiful, yet she worried that her grand-daughter might not be seen in the same way. I wish I could have spent an hour with her, such a lovely woman with so many concerns. I only discovered in later years how much my mother struggled with these negative perceptions and how she had to fight to keep me in public school instead of a school for children with mental and physical disabilities. What would I have been had she caved in to societal pressure of the time?

I walked away from that meeting with a profound respect for the parents there and a renewed appreciation for my own. With their support, determination, love and persistence, they made me what I am today.

S.773

2011-06-14T12:40:00.000-05:00

ACA Conference

2011-06-03T22:07:00.000-05:00

I had a wonderful time at the conference. It was very informative. A lot of people are dealing with chronic pain and there were two excellent sessions dealing with this topic. There were gait training sessions, glimpses of new technologies in socket designs (nothing earth shattering - some twists on the basic designs but way cool socket art!) and demonstrations of newer knees. All that is well and good, but let's get to the insurance fairness topic.

First, for several really good reasons, the term "prosthetic parity" is being dropped for "Insurance Fairness" (for who?) for Amputees. Makes sense and cuts to the chase. Senator Snowe reintroduced the bill in the Senate (S.773) and word on the street has it that the House version was reintroduced within the last few days. When I get the details I will draft two sample letters to send to your Senators and Representatives. In the meantime, you may notice a shift from "Prosthetic Parity" to "Insurance Fairness" on my site.

Second, we had a chance to talk with one of the higher ups at TSA. It was a reassuring meeting and the needs of people with disabilities are being discussed. Again, we should expect some changes soon, including (maybe) a way to opt out of the cast scope. One physician in the audience pointed out that the so called "minimal" X-ray exposure from the Cast Scope, when multiplied by the 4 or more different views times 2 per trip, times 20 or more trips per year quickly adds up to maximum exposure. Add that to the cumulative exposure that we with multiple orthopedic procedures receive or those who lose a limb to cancer and are exposed to radiation therapy... one person's "minimal" exposure is another persons tipping point. Thankfully, the ACA is working with TSA and we can expect some resolutions soon. We all understand the need for National security. And, as difficult as it is to tolerate, especially when we have already experienced limb loss, insurance discrimination and chronic pain, yes, because we are amputees, we must endure the additional screening.

It's June...

2011-06-01T20:34:00.001-05:00

Where does the time go?

What's new? Well, the neuroma is hanging in there. It has a life of it's own. It has its very own tiny brain that keeps seizing and sending pain messages up to my brain. I think I have it beat and then when I do too much (i.e., walking - as that asking too much?) it comes back and wrestles me to the ground. I hate it. Sometimes I think about cutting my leg open reaching in there, grabbing that evil, gnarly monster and biting it off with my teeth. It's the only thing limiting me at the moment. I have my strength, the socket is great, the C-leg is perfection. Turn me loose and let me go, please. I'm up to 2700 mg of gabapentin and 25 mg of amitriptyline. I'm in a stupor and it still gnaws at me. Gnaw, gnaw, zap, zing, tingle, spasm, wake up with the sensation of someone hammering a nail in your heel (which isn't there - neither the heel or the nail!). So here's the deal. We're going to electrocute the little sucker. A little electroshock therapy and hopefully some of those aberrant neurons will fry. Zap me? I'll zap you back. Bwa-ha-ha! Stay tuned.

The Amputee Coalition of America is having their National Conference in Kansas City. It starts tomorrow. What will it be like going somewhere where everyone is like you and you don't have to explain anything? Normal? Huh. What a concept.

We'll have an opportunity to talk to a TSA representative and to work on the parity issue. About time!

Part Two - Sample Letter to Governor Brownback

2011-03-22T12:27:00.000-05:00

Here's a sample letter you can send to the Governor. Cut, paste, edit - do whatever you like, but please send during the month of April!

Governor Sam Brownback

Capitol, 300 SW 10th Ave., Ste. 241S

Topeka, KS 66612-1590

Dear Governor Brownback,

I am writing in support of your decision to declare the month of April as “Limb Loss Awareness Month” in Kansas. This is an important step towards raising awareness of health and lifestyle changes to prevent limb loss but also to highlight the health care disparities that many with limb loss face.

For example, Kansas state employees who are covered by the State health care contract, drafted by the Kansas Health Policy Authority, do not receive the same standard of care that is customary by the Veteran’s Administration, Medicare and Medicaid. In order for a Kansas state employee to receive the same standard of care, they would have to pay $20-30,000 out of pocket. Financially, an employee would be better off to quit working and accept disability so that they could afford a prosthesis. Many do - or mortgage their homes and wipe out savings or retirement accounts.

To date, nineteen states have passed a parity law to prevent this type of health disparity. Please consider changing the state health care plan to cover prosthetics on par with medical coverage. For example, coverage for prosthetic care should at least meet Medicare standards (80 percent paid by plan, 20 percent by patient, no exemptions on microprocessor devices, 5-year useful lifetime limit).

All people with limb loss who pay for insurance should receive appropriate and medically necessary treatment: their arms and legs. Prosthetics provide dignity and self-reliance. Prosthetics put people back to work. Returning amputees to the workforce strengthens a community and its economy.

Sincerely,

New Governor - New Support

2011-03-22T09:53:00.000-05:00

I received a message from the Amputee Coalition of America yesterday, letting me know that the new Governor of Kansas, Sam Brownback, is going to designate the month of April as "Limb Loss Awareness Month" with a signing ceremony on Friday, March 25th. Unfortunately, I will not be able to attend the signing ceremony which makes me very unhappy since any recognition of limb loss by the state is a huge step in the right direction. While I doubt that Kansas will put forth a bill for prosthetic parity before the Federal bills pass, maybe Kansas will at least remove the restrictions from the state employee health care contract that only allows the most rudimentary prosthetics and orthotics, denying their employees prosthetics that even state Medicaid recipients are entitled to. Prosthetics that are commonly prescribed and provided under Medicare, Medicaid and the VA are deemed "luxury items" for state employees. Therefore, state employees who pay ever increasing insurance premiums are not covered. Please write Governor Brownback and encourage him to start by changing prosthetic benefits for state employees. Individuals who pay for insurance through premiums should receive appropriate and medically necessary treatment: their arms and legs.

Prosthetics provide dignity and self-reliance. Prosthetics put people back to work. Returning amputees to the workforce strengthens a community and its economy.

Look Very Closely...

2011-01-29T10:31:00.001-06:00

...and you'll see my Congressman Emanuel Cleaver and Senator Claire McCaskill sitting with Kansas Senator Jerry Moran and Senator Olympia Snowe of Maine at the State of the Union Address. Oh! How I wish I could have been there. Here's what I would have said:

"Congressman Cleaver - did you know that Senator Moran was a co-sponsor of HR 2575*, the Prosthetic and Custom Orthotic Parity Act of 2009 that will provide parity under group health plans and group health insurance coverage in the provision of benefits for prosthetic devices and... Oh my goodness! Look who else is here! It's Senators Snowe and McCaskill! Senator McCaskill, did you know that Senator Snowe introduced S. 3223? ** In the spirit of bi-partisanship, wouldn't it be wonderful if you, Claire and you, Emanuel, demonstrated your support for these bills?"

Ah yes, in a perfect world... OK, yes, it's a very tiny picture but it's real. In fact in Representative Cleaver' confirmed it in his weekly newsletter, "EC from DC."

*5/21/2009--Introduced.Prosthetic and Custom Orthotic Parity Act of 2009 - Amends the Employee Retirement Income Security Act of 1974 (ERISA) to require a group health plan that provides medical and surgical benefits as well as benefits for prosthetic devices and components and orthotic devices to offer such prosthetic and orthotic coverage in the same manner as applicable to medical and surgical benefits. Prohibits separate financial requirements or more restrictive treatment limitations.

**4/19/2010--Introduced.Prosthetics and Custom Orthotics Parity Act of 2010 - Amends the Employee Retirement Income Security Act of 1974 (ERISA) and the Public Health Service Act to require a group health plan that provides medical and surgical benefits and also provides benefits for prosthetics and custom orthotics to offer such prosthetics and custom orthotics in the same manner as applicable to medical and surgical benefits. Prohibits separate financial requirements or more restrictive treatment limitations.

TSA - Grope or scope? You don't get to vote!

2011-01-18T17:14:00.000-06:00

Maybe this wouldn’t have been such a miserable experience had Dave and I not been stuck on a shuttle bus for 3 hours and 40 minutes in total gridlock traffic coming from the conference in Keystone to the Denver Airport. Nonetheless, it is a real situation, one every traveler faces at some time when something keeps you from getting to the gate on time and you have to hurry to catch your flight.

We checked our bags at the Southwest gate, 20 minutes before our flight was to depart and arranged for a wheelchair because there was no way I could move fast enough to make it to the gate in time. But first, we had to get through security. Fortunately, there was a line for the “disabled” so we thought it would speed things up going through this shorter line. Think again.

I pulled off one boot and Dave went through with my boot, computer and purse. He was in and out in a flash, but I sat at the threshold between the full body scanner and the metal detector. One of TSA’s finest stared at me, rolled her eyes at my exposed C-leg and groaned, “Oh brother – I hope we don’t have to use the CastScope.” I said, “I’ll do the full body pat down, I just need to catch my flight.” Still, I waited. I waited until 3 more TSA agents showed up and they finally let me through the metal detector. It beeped (duh!) so I got the public pat down and gunpowder/bomb residue check. When she was done I realized she wasn't going to let me go and more TSA agents were standing around. Dave tried to hand me my boot but I couldn’t have it. I stood there with one pant leg rolled up, one boot off, Dave nearing panic, the wheelport transport guy checking the gate information and then they told me I had to undergo the CastScope.

I heard a guy on the bus saying that he wouldn’t know what to do if his wife had to have a full body pat-down. I find this so crazy. The majority of able-bodied are freaked out about the pat down but we amputees just have to get used to it. At at least there are options for the able-bodied. You see, the able-bodied can opt out of the full-body scanner if they don’t want to get exposed to X-rays and get a groping instead.

Amputees have no options. If an airport has a CastScope, it’s mandatory that we be exposed to several X-rays while they try to figure out what’s in there (or not). If you submit to the scoping, you can get out of the groping but not vice versa.

So, back to Denver… After what seemed like an eternity, I was taken to the door of the CastScope machine and waited for the poor schmuck before me to come out. The TSA agent wheeled me in front of the machine and started pushing a bunch of buttons on a flat screen. Without prompting and trying to speed things along I just stood up and positioned my leg in front of what looked like the right thing. Then she said, “You can go now.” As I left I heard her comment that it had “locked up again.” All that, and I never got the scope, just the grope. Dave ran through the airport and thanks to the heroic effort of the wheelchair transport gentleman, we got to the plane seconds before the door closed.

If you’ve lost a limb, you’re automatically a security risk. I wonder how this will play out with our servicemen and women who lost a limb or limbs defending our country? Somehow, I don’t think that being treated like a security threat will sit well with them.

More on TSA

2010-11-21T09:24:00.000-06:00

I'm providing more stories about amputees dealing with the TSA here, here, and here. Again, I can't help but be a little amused at the general public's outrage with the new TSA practices when we've dealt with this kind of scrutiny for years.

If you're flying over the holidays, familiarize yourself with the TSA rules regarding prosthetics. Carry a copy with you in case you're subjected to anything like the nightmare situations above.

TSA - No Disparity Here!

2010-11-18T19:07:00.002-06:00

OOOOoooo... I love it! Welcome to MY world!

Ever since scanners and pat downs have been around, I've been suspect just because I have a prosthesis. I announce to everyone that I have "an artificial leg" which draws the attention of all the other passengers but never the bored and indifferent TSA agent. Next, I walk through the scanner and set off the alarm, so they tell me to go back. I announce AGAIN what the problem is and if they're listening, they yell, "FEMALE PAT DOWN!" Then I'm instructed to stand on the little green footprints on the floor and hold my arms away from my sides while they run the wand over me. Of course they find "the leg" so AGAIN, I explain. (So much for HIPAA - now 200+ passengers know my medical history). Because the wand goes off, they have to pat me down explaining that they're using the back of their hand (come on... how many guys in High School would have cared if it was the back or the front of their hand...really!). And, we're not done. Then I have to sit down and they swab my hands and my leg to check for bomb residue. Finally, I'm free to try to find my carry on luggage that went through 5 minutes earlier, without me.

Think it's just me being extra sensitive? Read this 2 year old story.

That's the best case scenario. The worst case is having to disrobe in a booth to show ALL of the prosthesis. Note to self: Always wear nice underwear when traveling. Or the questions, "How far does it go up, how far does it go down, blah, blah. Then everyone is staring but trying not to stare.

So...now the rest of the world is dealing with what I've put up with for years. The outcry is all over the news "Now, I'm here to tell you, it's an outrage! An outrage I say!! We won't be treated this way!"

The Amputee Coalition of America surveyed 7,300 amputees about their experience with the TSA and 75% were dissatisfied. I'm guessing that's similar to the general public's level of dissatisfaction, after all, we are the general public. We're just the general public with a prosthesis or two.

So, in my quest for parity, who knew that the TSA would be the first to get in line?!

Why I voted against...

2010-11-11T20:11:00.000-06:00

... my representative, Emanuel Cleaver, D-MO. For two years I've never gotten a response that made any sense, much less addressed the issue of prosthetic parity. I received letters that assured me that mental health parity was indeed important (huh?!) and that yes, he supported the health care bill (prosthetic parity was not included in the massive health care reform bill) and I forget what the latest generic response I got was, but none addressed HR 2575. I mean, how hard is this really? A Google search could find the text for "HR 2575." Cut, paste, co-sign the bill and I'm a happy voter. Too late. My one vote didn't matter though so it's back to work trying to make my voice heard.

On the flip side, Jerry Moran, R-KS, has cosigned the bill and is now a US Senator. Congratulations to Senator Moran and thank you again.

Now, please, let's get these bills passed. Please contact your senators and representatives!

Where have I been?

2010-11-11T19:43:00.000-06:00

Busy... so busy with work - the kind that pays the bills. I've also developed a pesky neuroma. A neuroma is the result of cutting the sciatic nerve. The nerve cells start growing into a little ball, sending out all sorts of crazed messages that spell PAIN. I was in serious denial for a long time - maybe a year. We blamed the socket and no doubt there were some serious issues with the socket materials, but once we ironed these out, the pain remained. Gnawing, crushing pain that invaded my thoughts and every moment of my day and night. Every step, even something as simple as rolling over in bed brought it on. Vibrations from the car would send my leg into spasms and phantom pain.

The MRI revealed the neuroma and I still denied that something that small could cause so much pain. I saw a pain specialist that listened to all my drivel about bone spurs, etc., and he calmly said, "It's the neuroma (stoo-pid)." One injection of anesthetic and steroid shut it down. Dang. It was a miracle. Four weeks later it reared it's ugly head and like resistant bacteria, nothing could calm it. It was back with a vengeance. I was certain that surgery would be the answer so I visited my surgeon. She described what it would take to find, cut out and calm the nerve with no guarantee that it would not come back and could possibly come back even worse. It was gruesome and left me reconsidering my pain options. So, back to the pain specialist.

Now I'm on 1800 mg of Gabapentin and 25 mg of Amitryptyline a day. This dulled the constant, gnawing pain and allowed me to at least walk about 25 yards without seizing up. Two weeks ago I had a lumbar block which basically consists of having 5 inch needles stuck in your back and blocking the sympathetic nerve that sends the message from the sciatic to your brain; the message that says, "OH MY GOD! OW!" Brilliant. I can walk. I can roll over in my sleep. Now, when walking away from a group, instead of acting like I'm doing something "busy" while I ever so slowly get used to the pain, I stand up and walk away. It's not perfect or permanent, but right now, this moment, it's damned good!

And, speaking of good, I figured out how to modify the old 3R80 knee for riding. That floppy, useless hydraulic knee is perfectly suited for riding. Just turn the foot in 45 degrees and let the knee hang. It only has two useful positions locked upright - which allows me to stand in the stirrups - and hanging there passively, all booted up and in the stirrup. Very useful for riding and I don't scare small children like I did riding with no lower leg.

And now, about that parity issue. It's about as stale as an old Cheez-it found with the loose change under the couch cushions. Alright already. The elections are over. Let's get this show on the road!

Disparity in Action

2010-07-30T20:51:00.000-05:00

Same-o, Same-o. How long have we been at this? Disgusting isn't it? The state laws are nice but the self-insured plans, like those in Kansas would be exempt if a state prosthetic parity law passed. That's why my energy is no longer directed towards introducing legislation in Kansas. Instead, I've directed efforts to pass the Federal parity bills that will enforce the law in all states.

I wrote my Senators and Representatives several months ago asking them to Co-Sponsor and support S. 3223 and HR 2575. Here's the tally so far:

Cleaver, D-MO: No response. Previous letters responding to my request were totally off topic, i.e., mental health parity, the national health care bill, both of which have passed and in the years I've been writing, the Prosthetic Parity Bill is still on the table. His office has never acknowledged that I'm asking him to Co-Sponsor the HR 2575.

Bond, R-MO: No response, ever.

McCaskill, D-MO: Responded that she would like to support it, but there was no Senate Bill. *sigh* Why is it up to me to point out that there is a Senate Bill? I realize of course that Senators are too busy to know what all is out there, but don't they have people working for them? Sheesh! Look it up!

I'm happy to report that Jerry Moran, R, KS-1 has Co-Sponsored HR 2575 as have 27 other Representatives; just not mine.

The Federal Prosthetic and Custom Orthotic Parity Act (S. 3223)

2010-04-23T08:31:00.002-05:00

From the ACA (I've bolded the especially important part):

The Federal Prosthetic and Custom Orthotic Parity Act (S. 3223) was introduced April 19 by Senators Olympia Snowe (R-ME) and Tom Harkin (D-IA). The Amputee Coalition of America (ACA) and the American Orthotic & Prosthetic Association (AOPA) have worked together with special help from the O&P Alliance over the past year to get the Senate bill introduced. In addition to the Alliance members and the ACA, there are more than 25 other nonprofit organizations with a stake in O&P patient care outcomes supporting the legislation.

The importance of federal parity and state parity legislation has grown dramatically with the passage of the recent healthcare reform law, which permits health insurers to sell across state lines under "health insurance compacts." These multi-state arrangements allow the insurer to select the lowest common regulatory denominator. It is feared that states without parity laws would often be the insurer's regulatory venue of first choice. This choice would, in effect, rescind or override any parity laws that may have been passed in other states served by the "health insurance compact." This makes federal parity and state parity laws virtually indispensable, both in filling the gaps created by self-insured employers regulated by ERISA that are unaffected by state laws as well as reinforcing existing state laws that govern state-regulated insurance offerings. [KFG: To sum it up, KS would make a good home for those trying to dodge the state parity laws - then everyone could get the same treatment I get!]

The House P&O bill, HR 2575, was introduced last year by Representatives Rob Andrews (D-NJ) and George Miller (D-CA), who is also chair of the Education and Labor Committee.

We have strong bipartisan, chief sponsors of our Senate and House bills.

Senator Snowe said the following about the Senate bill:

"Our legislation will ensure that group health plans treat coverage of such prosthetics and custom orthotics on par with other essential medical care covered by health insurance. Providing more meaningful coverage is particularly essential for children, who may require more frequent replacements as they grow."

Senator Harkin added:

"Hundreds of thousands of Americans living with limb loss are currently required by their insurance companies to pay out-of-pocket for prosthetic devices that are integral to their daily lives. While most insurance companies cover prosthetics and orthotics, there are many instances where the benefits are arbitrarily capped or exclusions are imposed on those who need them. This legislation will require insurance companies to provide the same benefits for prosthetic devices as they do for other treatments, helping individuals with disabilities more fully participate in school, work and community activities."

Representative Andrews said the following about the House bill:

"By expanding coverage for prosthetic devices so that it is on par with other types of essential care, not only will amputees receive necessary treatment and experience better quality of life, but the healthcare industry as a whole will save money. Since prosthetics often dramatically decrease secondary health problems for those in need, the benefits of this coverage far outweigh the costs in the long run."

At this critical point, with a House bill and now a Senate bill both introduced, the ACA is gearing up grassroots activities and has a call to action for you to contact your member of Congress and ask him/her to sign as a cosponsor of the bill.

Two things

2010-04-10T13:25:00.000-05:00

I'll admit I've not spent much time here lately but two things caught my eye this week. First, there's an interesting and detailed summary of what it took to get prosthetic parity - not true parity, but a compromise - through Virginia. If you're interested, you can read it here: click me

This paragraph hit home: One of the reasons for the Advisory Commission's recommendation was the extremely positive report prepared by the Joint Legislative Audit and Review Commission. The JLARC report cited among other things 1) it was a reasonable presumption that amputees deserved to receive reimbursement from their health insurance for prosthetic care, 2) amputees who received the prosthetic care they needed were likely to return to life as productive members of society which could in turn save the state's social assistance programs, 3) the projected cost for the proposed coverage would be about .24 cents per month.

It is a very frank report and brings home why I cannot single handedly bring prosthetic parity to KS. Nevermind that niggly detail, you know, the fact that I don't live in KS. Apparently I'm the only person working for KS who can't get insurance coverage for their prosthetic. Hmmm...who knew?

Then there's this especially hard hitting essay by Jothy Rosenberg about the indignity of going through airport security. It had my stomach tied up in knots by the time I was done reading. I've experienced the same embarassment and humiliation in airports and try to laugh it off. Ha-ha! Isn't it funny being an amputee and stripping down for the Looky-Lu's! There's nothing more fun than being the freak in the freak-show! Well, it isn't funny and it wears a body down. Between the humilation of baring your soul begging for a leg to stand on and baring your butt in airport security to total strangers it's more than I can stomach anymore.

Unless I find some new motivation or inspiration, I'm taking a breather.

One small step for health care reform, One giant leap for prosthetic parity...

2010-01-21T18:43:00.000-06:00

Doesn't look like the health care bill is going to get passed anytime soon so here's the perfect solution...

Pass HR 2575, the federal prosthetic parity bill.

Think about it. Over 1.7 million people in the US have lost a limb. Losing a limb is catastrophic and when your insurance company considers a limb prosthesis a convenience or a luxury item (yet covers prosthetic breasts and penile implants) it is emotionally, physically and financially devastating for millions of families.

You want tax dollars? Put people in limbs and get them back to work. You want to reduce the drain on state coffers for vocational rehabilitation and welfare? Put people in the proper prosthetic, the one prescribed by their health care professional, and get them back to work. Do you want determined, gritty, can-do people in your workforce? Hire an amputee. This bill doesn't cost money, it saves money. It's a no brainer. Get behind it and pass it.

Speaking of getting behind HR 2575... much to my delight and surprise, I found that Jerry Moran (R-KS, 1st district) co-sponsored HR 2575! Thank you Representative Moran! If he's in your district, or even if he isn't, give him a pat on the back.

Just for fun, I started looking into other state-managed employee health care plans to see if any other states, like Kansas, use the same discriminatory language to limit prosthetic coverage for their employees. So far I've checked Nebraska, Iowa, Minnesota, Ohio and Mississippi. Nope. All covered under medical and many with maximum out-of-pocket ranging about $2,000. Interesting.

More to come.

Innovation at its best

2009-12-15T21:45:00.000-06:00

Prosthetic got you down? Can't do what you used to do? Then invent one that will and share it with the rest of the world. That's what Brian Bartlett did and when I saw this knee, my jaw dropped. I have been frustrated with not being able to ride with both legs. I just take off the knee component and ride with the socket on and no lower leg. Rides are shorter, slower, less challenging and obviously limited to staying mounted. But...with a knee like this...I see no limitations!

Prosthetic Parity in Illinois!

2009-12-15T08:24:00.000-06:00

From the Illinois Government News Network comes this press release:

Governor Quinn Signs Law Improving Orthotic, Prosthetic Insurance Coverage
Requires Health Plan Parity for Policyholders’ Benefits, Conditions

CHICAGO – December 13, 2009. Governor Pat Quinn today signed a bill into law that will benefit thousands of orthotic and prosthetic users in Illinois covered by private health insurance plans. The law ensures that coverage for orthotic and prosthetic devices is the same as nearly all medical or surgical benefits.

“Those covered by orthotic and prosthetic insurance policies will get stronger and better coverage that is in line with other medical and surgical insurance benefits,” said Governor Quinn. “This new law should provide a greater degree of financial protection and security to those who depend upon these important devices and to their families.”

In addition, the new law will give more orthotic and prosthetic users access to new, technologically-advanced and well-fitting devices. There are over 69,000 people in Illinois living with limb loss and a comparable number of people living with disabling diseases such as Spina Bifida, Cerebral Palsy and Muscular Dystrophy.

Governor Quinn signed into law HB 2652, which was sponsored by Senator Antonio Munoz (D-Chicago) and Representative Kevin Joyce (D-Worth). The law goes into effect June 1, 2010.

The new law pertains to health insurance plans that contain coverage for orthotics or prosthetics (excluding foot orthotics). It amends the Illinois Insurance Code by adding a section requiring those insurance plans to provide coverage that’s on par with “substantially all medical and surgical benefits” covered in that plan.

The law pertains to health insurance plans covering orthotics or prosthetics that are issued, renewed or delivered six months after June 1, 2010.

Helping to inspire passage of this new law is the family of 14-year-old Allie Johnson, who was born without a right arm. Her insurance company would only cover one prosthetic for her lifetime. Her mother, Laurie -- who for nearly 15 years has worked with Families and Amputees in Motion and is now its president—has spent that last two-and-a-half years working with legislators and other advocates to pass the insurance parity bill.

“This new law is going to help thousands of Illinois citizens. It will improve their lives financially but, just as important, enable many of them to go back to work and contribute to society in general,” said Laurie Johnson.

Other groups and constituents that rallied in support of the Orthotic and Prosthetic Insurance Coverage Parity law include: Illinois Society of Orthotists and Prosthetists; United Healthcare; Tammie Higginbotham; and Douglas Knight, a member of Spina Bifida Association and the National Federation of Independent Business.

Among those joining Governor Quinn at the bill signing ceremony were: Representative Joyce; Senator Munoz; Representative Jim Durkin (R-Countryside), co-sponsor of the bill; Rep Monique Davis (D-Chicago) co-sponsor of the bill; Laurie and Allie Johnson; and Jim Kaiser, a Member of Families and Amputees in Motion.

Dollars and Sense

2009-12-07T21:51:00.000-06:00

Here's an interesting viewpoint that I came across from Hewitt Associates. [Wikinition: Hewitt Associates (NYSE: HEW), based in Lincolnshire, Illinois is a global human resources (HR) outsourcing and consulting firm delivering a complete range of integrated services to help companies manage their total HR and employee costs, enhance HR services, and improve their workforces.]

Since I'm becoming more than a little jaded after a few years of this fight, I didn't expect a favorable view of prosthetic parity from this company but I was pleasantly surprised. They obviously understand the dollars and cents (sense). It's a little outdated in that 17 states have now passed prosthetic parity into law. Nonetheless, it's encouraging that a company of this magnitude, with a primary focus in managing costs, enhancing HR services and improving the workforce, sees the wisdom behind prosthetic parity. Thank you, Hewitt Associates!

Dear Mr. President,

2009-11-22T16:30:00.001-06:00

I don't have to say anything. This video says it all.

How the system is supposed to work

2009-11-13T21:37:00.005-06:00

Here's a story that's close to home. This is an example of how medicine and prosthetics should work. When you watch the video, you'll see my surgeon and my prosthetist because this surgery was done right here by the same professionals that helped me after my accident.

You can witness the level of dedication and compassion to provide what's best for this young man who loses his arm to cancer. However, he lives in Missouri, a state where prosthetic parity is the law. Discriminating against amputees is illegal here so he will get the prosthesis prescribed by his physician and demonstrated in this video by his prosthetist.

If he were a Kansas resident, his prosthesis most likely would not be covered. If his parents worked for the state, it most certainly would NOT be covered. In Kansas, this would be considered "deluxe, a luxury item that provides comfort and convenience to the amputee and is thereby a non-covered item." In KS, he would get a hook and a socket, a throwback to World War II.

Toto, we're not in Kansas anymore... (thank God!)

Sound familiar?

2009-11-03T08:33:00.004-06:00

Just more of the same. When are we going to meet in the middle? People are forced to buy prosthetics off E-bay in the United States? What's it gonna be? Mortgage the house or go to E-bay for a black market prosthetic?

I also saw a headline today that read, "Will amputees soon have access to robotic limbs that give them virtually superhuman physcial abilities?!" Duh. NO. Not when we can't even access 10 year old technology. Plus, if ignorant reporters who don't have a clue how prosthetics compare to a real limb keep putting these kinds of articles out there, the insurance companies will continue to look at anything even moderately "advanced" as something deluxe and "superhuman." Hey, give me "close-to-human" first. Give me a good socket that fits. Here's what I can do with my "superhuman robotic limb." Stand up, sit down, walk well on a perfectly flat surface, step backwards, sideways, carry heavy objects without the knee collapsing and falling down. Walk pretty well on rough surface, cycle, walk at various speeds and walk up and down inclines. Here's what I can't do: Sit on a bar stool, sit with both feet touching the floor, jog or run, feel my foot, ride with the C-leg on, get near water with the C-leg on. Doesn't sound very "superhuman" to me.

Anyway, back to today's video. This is the best technology available and this is one plucky lady. She's a "superhuman" but not because of her prosthesis.

Why you can't get an arm or a leg

2009-10-22T17:15:00.005-05:00

I was doing a little reading this afternoon and came across this report from United Health Care. If you're here reading this blog because your insurance has denied your prosthesis, you should read it. While we cheer the success of states who have passed prosthetic parity into law, remember that there are people out there who don't want you to have an arm or a leg. For example:

Iowa
House passes bill that would mandate coverage for prosthetic devices and prevent insurers from offering high deductible health plans. Despite efforts from the business community and insurers, the Iowa House of Representatives voted to mandate coverage for prosthetic devices at the same level as Medicare (HF 311)...

Nebraska
Legislature hears testimony on mandated coverage bills. On February 17, 2009, the Nebraska Insurance Federation and the Nebraska Health Underwriters testified in opposition to three bills mandating coverage for prosthetics to the extent covered by Medicare (LB 149)...

Virginia
Benefit mandate legislation passes. Legislation that passed this session requires coverage for prosthetics... [KFG: Actually, Governor Rell vetoed the bill so Virginia amputees lost out. Much to the delight of the insurance industry I'm sure!]

The insurance industry is well aware of the push for prosthetic parity and is keeping their people busy making sure it doesn't pass. There are some contact emails on the United Health We-could-Care-less-about-you report. Perhaps you might feel inclined to write them a letter!

Wondering where those premium dollars are going? Sending people to the state capitals and congress to make sure you don't get what you need. What's their slogan? "Healing Healthcare. Together." That's a big ol' warm fuzzy, isn't it? Good to know they're looking out for your best interest, 'eh?

But you don't LOOK handicapped?!

2009-10-15T20:11:00.004-05:00

When Dave and I went to our annual music festival getaway this year, I was thrilled to bring my little 2-wheeled electric scooter so that I could zip around the festival grounds. This is a huge festival, in the 10's of thousands of campers, spectators, etc., and we like to travel to various camps to play, so walking is out of the question even for the able-bodied, when weighed down with instruments.

I wasn't on the grounds for more than 5 minutes, renewing old friendships when up comes Barney Fife in his golf-cart, telling me that I couldn't ride my zippy little scooter! I said, "Even if you can do this?!" and proceed to unlock my knee, whip the leg around and put the bottom of my foot up to my ear. That little antic awarded me a trip to the security office where 3 Barney's looked over my scooter to be certain that it had a light and turn signals. Once I passed inspection and kept my witty rhetoric to myself, I was permitted to ride around the campground. For reference, bicycles, golf carts and other devices are permitted. My scooter is smaller than my bicycle.

After this interesting diversion, I went back to my friends, shaking my head. Just as I popped open a beer and sat back to enjoy the vacation and good company, up comes the original Barney. "Do you have some kind of thing you can hang on your scooter to show you're handicapped?" he said. I asked him if he would like me to hang a big red "H" around my neck or maybe tattoo it on my forehead? He said that I would probably get hassled less if everyone knew I was handicapped. I politely reminded me that he was the only one hassling me and that the cat was out of the bag.

Herein lies the rub. This is the same mentality that prevents coverage for anything that makes you more "normal," that provides mobility, that makes you more equal to your able-bodied peers. If I had shown up in a wheelchair and Dave would have had to push me around the fairgrounds, up and down the bumpy gravel roads, that would have been OK. After all, I'm handicapped, so act like it! Give me a cute little scooter and suddenly I'm a threat. What? I can't be mobile and handicapped?

Let's take it a step further. It's OK to provide a substandard "basic" prosthesis. I mean, what do you expect? You're HANDICAPPED. Get out the big red "H." Oh, this other prosthesis with all the bells and whistles prevents you from falling, allows you to walk fairly normally without being exhausted at the end of the day? Oh, sorry. We don't allow that. You're handicapped. Get used to it. It's OK to be mobile, but let's not get too mobile, or start acting like normal folk. You're handicapped. Act like it. Accept it.

That mentality creates language like this:

"If you elect to purchase a prosthetic appliance or device with deluxe enhancements or features such as electronic components, microprocessors or other features designed to enhance performance (God forbid we would want to enhance performance for an amputee!), 'the Plan' is only responsible for the amount that would have been allowed for a basic (standard) appliance. You will be responsible for paying the additional cost of the deluxe enhancements, electronic components, microprocessors, performance enhancements, comfort, convenience or luxury items."

Arms and legs are not a luxury. Why, when we can replace amputated breasts without question, when we can provide a penile implant to sire children, why, why, why can we not provide an arm or a leg? No prosthetic limb, no matter how advanced, will ever come close to the real limb. Are we not allowed the dignity of trying to be as normal and as functional as possible?

The festival was in Kansas and the offensive and discriminatory language above is out of the KS State Employee Health Care contract. Unfortunately, this language has not changed and is in the 2010 contract. Nothing has changed. But then again, you're handicapped. Get used to it. Accept it.

Never...

A kiss or a hug?

2009-09-25T11:55:00.007-05:00

These two pictures move me in very different ways. On the left, we see Obama hugging Tammy Duckworth, Assistant Secretary of Public and Intergovernmental Affairs for the VA who lost both legs in combat. Click on the photo and you can read the message from the Amputee Coalition of America and the American Orthotic and Prosthetic Association urging us to tell our Congressmen and women to support House Resolutions 2479 and 2575. It boils down to this: Amputees want a guarantee that they will have fair access to arms and legs.

I am firmly behind these bills. We are a technologically advanced nation, yet these advancements in prosthetics are not available to the very people who need them. Everyone "ooo's" and "ahhs" over the coverage on 60 minutes because stories like this give the impression that these technological advances are, and will be, there for me and others now and in the future. Unless these bills pass, amputees will not have access to prosthetics that give us the dignity, comfort and mobility that we need.

Now to the kiss - Here Obama is kissing the woman who is responsible for denying me and other KS state employees complete prosthetic coverage. So...what's it gonna be? The kiss or the hug?

I want to hear from you

2009-08-23T12:50:00.003-05:00

Since we're in the midst of the health care debate and prosthetic parity, I would like to hear from amputees about what is or is not covered in their state or in their country. What is it like in Germany, Thailand, Switzerland, etc?

If you live in a state where parity has passed, has it made a difference?

Write by leaving a comment here or write me at katmanjo@gmail.com

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

2009-08-10T21:14:00.004-05:00

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

2009-08-07T09:31:00.007-05:00

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...

2009-08-05T20:07:00.003-05:00

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

2009-07-30T21:24:00.003-05:00

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

2009-07-11T11:22:00.004-05:00

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!

2009-07-06T17:32:00.005-05:00

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

2009-06-26T13:06:00.003-05:00

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...

2009-06-09T22:52:00.002-05:00

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

2009-05-17T10:22:00.002-05:00

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!

2009-05-06T23:04:00.004-05:00

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!

2009-05-04T08:19:00.003-05:00

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!

2009-04-30T08:42:00.012-05:00

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

2009-04-24T21:47:00.006-05:00

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!

2009-04-16T07:53:00.003-05:00

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

2009-04-14T07:17:00.002-05:00

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

2009-04-10T07:08:00.003-05:00

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

2009-04-05T10:10:00.002-05:00

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?

2009-03-30T08:05:00.002-05:00

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...

2009-03-26T20:09:00.005-05:00

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

2009-03-15T15:45:00.001-05:00

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.”

Hmmm....

2009-03-04T20:01:00.010-06:00

It's against the law now in 11 states to restrict prosthetic coverage. Leglislation is pending in 30 more states. That's 41 states in which legislation is either pending or passed. That leaves only 9 states in the dark and the Governor of one of those states is President Obama's choice for the Director of Health and Human Services. I've been reflecting on the appointment of Governor Kathleen Sebelius to Director of Health and Human Services for the last few days. It's weirdly ironic, that's for sure. Honestly, I don't know how I feel about it. Problem is, I'm trying to form an opinion with no evidence from the Governor or her appointees to the Kansas Health Care Commission that they really care about the issue of prosthetic parity because...well...frankly, because neither the Governor or her appointees have responded to a single letter that we've written. On the other hand they are considering changing the 2010 state employee health care contract. Ask me again in May when a decision is made on the contract. Ask me again when the Federal prosthetic parity bill gets sent to HHS.

News from other states:

Utah - the House has passed a prosthetic parity bill. Opponents complain saying, "We won't have a market driven health care system." R-i-g-h-t. Market driven. I'm going to stop here before I say something profane. The cost? 18 cents per policy holder. "OOoo...I don't know. Should I get the policy with or without the prosthetic coverage in case I should have an accident and lose a limb or should I buy a chicklet?"

Virginia - SB 1116 was passed by the Virginia House on a 99 to 0 vote. There is one more bureaucratic step to make sure the Senate agrees to move the House version, but the bill should be on its way to the Governor's desk very soon. *UPDATE* The bill passed the House and Senate!

Maryland - (video)

Missouri - On March 10, 2009, the Missouri Senate Committee considering the Prosthetic Parity Bill voted unanimously (7-0) to pass it! It still has to pass the House committee and then the full House and Senate but this is a great start and speaks to the soundness of the bill. GO Big MO!

Kansas - Prosthetic parity? Here's an old fence post and a paring knife. Get to whittlin' there girl!

Visitors from the Other Room

2009-02-18T19:30:00.004-06:00

Welcome - Seriously, you are welcome here. So, while you're here checking me out, let's chat a bit about how we got to this point and why I feel so strongly about this issue.

Sometime in the late '90's insurance companies started to discontinue or severely limit prosthetic coverage with total disregard for transparency. It's easy to see how this slipped under the radar for a while, but then came the outrage.

We all know the importance of having health insurance. We pay premiums so that, in the event of a catastrophic illness or injury, there is a safety net. For amputees, some joker moved the net at the last second. Many people have to resort to loans, dipping into dwindling retirement savings, a second or third mortage or just doing without. Think of the trickle down effect this has on the economy and the long-term effects on health. It doesn't take a rocket scientist to figure out that I will generate more revenue for the state if I continue to work and stay active vs. going on the public dole and getting the proper prosthesis from state Medicaid. That's what's so crazy-making about all of this! It's this short-sightedness that has adds to the fiscal mess that's currently unfolding. Those states that have already passed parity laws have come to this realization.

So how did these parity laws come to be? How do insurance mandates happen? Sure, folks would like to blame the outraged amputee, the one-legged whiner stomping their singular foot - but - frankly, you brought it on yourself. When private insurance openly practices discrimination, you may save money in the short haul, but in the end, laws will be passed to mandate fairness.

Mandate fairness. It's kind of sad, isn't it?

More Obstacles

2009-02-17T05:27:00.009-06:00

BCBS of KS sent me a letter last week saying they would expedite my second level appeal if I would "respond to this inquiry and send your reply to the expeditor." What inquiry? "This" inquiry. Was there a question, a query, a search for information or the truth? No. Word for word, that's what it said. I tried pressing the letter to my forehead but my Carnac the Magnificent skills have been lacking of late.

It's moot anyway when you consider the State of the State. (click link to read article and see video) There are some interesting numbers in this article - KS has the worst benefits dollar-for-dollar, 40th in the nation for pay and there's a State Employee Union? I didn't know that! Now there's talk of not getting paid. This looks more like attention-getting political wrangling but I'll let you know on Friday.

Fighting for parity is hard enough but during a recession is nearly impossible. It seems every small gain is countered by a mammoth setback.

A trip to Topeka

2009-02-06T18:02:00.005-06:00

I went to Topeka, KS today to attend a meeting of the Health Care Commission. This should be mandatory for anyone trying to make sense of how health plans work (or don't) for you. The reason it should be mandatory is because you can see both sides of the problem. On the one hand, the state has X-dollars set aside to provide basic health care to the insured state employees. Given budget cuts and the dismal economic outlook, keeping money in the state coffers to cover health care costs is going to be a challenge. I can appreciate that even more after this meeting. But, let's cut to the chase.

Question: Should the state cover electronic prosthetic components? There was a lot of discussion surrounding this. It boiled down to either removing the electronic exclusion from the contract OR...putting a cap on prosthetics in general. That would have been the kiss of death. What about all those other whacky exclusions like comfort, convenience, etc.? They didn't come up. Some key questions that might give a person insight into the thought process are: Does Medicare and Medicaid cover this? (yes) Are there limits to who might receive such a prosthesis? (no direct answer here - that surprised me because there ARE) Is there an alternative approach, i.e., a limit (cap) on prosthetics? (strong arguments against this approach).

Cut! Rewind....

Prior to this discussion, it turns out that there was a KS Senate bill that required KHPA to conduct a study and determine whether to include bariatric surgery under medical coverage. A Senate bill (SB511) mind you! I don't know whether to stand here slack-jawed or pat myself* on the back for accomplishing the same thing for prosthetic parity without a Senate Bill. I'm not going to dwell on this except to say that there are now two issues concerning the 2010 health care contract - whether to include bariatric surgery and electronic prosthetic components. No decision was made today on either, but, to the credit of KHPA, they are going to convene a technology committee of prosthetists and medical doctors to learn more about prosthetics, how they operate, who needs them and why so they will no longer be in the "dark ages of coverage." (Their words, not mine.) Ultimately, the decision will be that of the Health Care Commission and I expect that decision will be made by May.

I know you might be thinking, "What's taking so long and how is that going to help you?!" Well, it's the government and look at the bright side - we didn't have to have a Senate Bill to get KHPA to do some research and convene a committee to look at fair coverage for amputees. As for me and my wonderful C-leg, it's probably too little, too late, to do me any good. Still, if we can accomplish prosthetic parity for state employees, then we've built the foundation for state wide parity.

I will say that I feel significantly less crazed, less like I'm trying to paddle up the Missouri river with a fly swatter. That's a good thing.

I'm going to go play some tunes now.

*this includes all of you - the friends, colleagues, senators, representatives and fellow amputees and above all, Dave, for giving up a perfectly good day to sit through a meeting!

Drum Roll - May I have the envelope please?

2009-01-28T21:08:00.008-06:00

After two months, I received the response to my 1st level appeal to BCBS of KS. (The photo to the left would be considered a "covered" item - a sock pulled over a Pringle's can, stuffed in a shoe.)

This is what I wrote in my "2nd level appeal." I have to exhaust all my appeals before I have the right to bring civil action. It's just a way to keeping dragging things out hoping I'll go away or get run over by a truck before they have to deal with me.

Thank you for the detailed review of my first level appeal. I can see by your response that you have given this matter a great deal of consideration. Indeed, it took 2 months to generate the following paragraph: [KFG: This is "Sarchasm" - The gulf between the author of sarcastic wit and the person who doesn't get it.]

"The items denied as non-covered were reviewed pre-service and notification was made to you that the micro-processor knee and lithium battery were considered electrical add-on items and were exclusions to the contract. The contract does not specifically indicate the denied items as ‘deluxe’; however, they do fall under the exclusion for charges for electrically operated prosthetic appliances, devices or items. This exclusion applies only to prosthetic items, not durable medical equipment such as a pacemaker, insulin pumps or other items indicated in your appeal. Therefore, the denials are correct."

[KFG: Woo-Hoo! They came right out and admitted that they only discriminate against amputees!]

Thank you for confirming that this exclusion is limited only to prosthetics. Therefore, by default, only amputees are affected by this arbitrary exclusion. That was precisely my point and your confirmation is very informative. While you are correct in that the contract does not use the word “deluxe,” I have several documents from your company and the Kansas State Employee Health Policy Authority that specifically use the word “deluxe” as a reason for denial. The word seems to have found favor since the 2009 State Employee Health Care Contract now denies amputees “deluxe enhancements, electronic components, microprocessors, performance enhancements, comfort, convenience and luxury items.” I’m not certain that there is a CPT code for comfort and convenience, but I can assure you that there is nothing comfortable or convenient about amputation and using a prosthetic limb.

Yada-yada, blah, blah, blah....

So, let me see...around the end of March, first of April, I should get back another thoughtful paragraph that says, "No."

URGENT - Breaking News!

2009-01-14T09:25:00.007-06:00

You must watch this video (CLICK HERE!) on Good Morning America! Please write Good Morning America and share my story. This is an excellent opportunity to draw attention to the lack of prosthetic parity in Kansas! If you can't get the video, you can read the transcript by clicking on this link.

The latest report I have from the policy makers in KS is that the Chairman of the Health Care Commission, Duane Goossen, is also the state budget director and the budget is a mess, so I'm way, way, down on the priority list. Let's rock the boat.

You can watch the videos down below too, but for now, START HERE.

The C-leg: Making a Difference

2009-01-14T08:42:00.001-06:00

Watch CBS Videos Online

Striking Parallels

2009-01-13T14:43:00.005-06:00

I saw this story on the Today Show this morning. There were a lot of striking similarities between her story and mine, the same language, the same arbitrary denials. See if you don't think so too. (If the video player below doesn't work for you, click this link)

Visit msnbc.com for Breaking News, World News, and News about the Economy

Parity and Microprocessors - A Fresh Perspective

2009-01-10T09:56:00.002-06:00

I came across the writings of Jothy Rosenberg, an above knee amputee and cancer survivor who has written several compelling essays at his blog, A Leg Up. He writes about the need for prosthetic parity and has a must read article about microprocessor knees that explains why not all prosthetic knees are created equal. Grab a cup of coffee and give it a read - great stuff.

Boiling Oil...or...How I Learned to Play Piano

2009-01-02T11:16:00.006-06:00

We spent New Year's Eve at a friend's house and got into a conversation about music - whether people are born with talent or just persist until they become experts. That got me to the "boiling oil" story which, I suppose it's fair to say, that I wouldn't have learned to play piano or become the musician that I am had it not been for growing up with "the leg."

Sometime around age 5 I was at the Children's Hospital in Memphis for Operation-Number-God-Only-Knows, a place where I spent every summer for the first 10 years of my life in an effort to fix the bone in my lower leg. Dad and I were watching a movie on television - the peasants were storming the castle and the defenders of the castle were pouring something down on the peasants that was causing a lot of writhing and screaming. "What's that?" I asked. "Boiling oil," said Dad. Wow. The agony - to be coated in boiling oil - horrors! It made an impression that would last a lifetime.

While I was contemplating such a horrible death, Mom was running around the hospital and bumped into some RLDS missionaries. As desperate parents in search of a cure will do, she thought it might help if they came and prayed over me. The missionaries thought it might help too, maybe pick up a couple of converts which ultimately, they did, but that's another story.

Mom returned to the room about the time the movie was wrapping up and said, "There's some nice men outside who want to come minister over you." Say, what? I didn't have a clue what she was talking about so she explained that these two men were going to have a "laying of the hands" over me and that it might fix my leg. Fixing my leg peaked my interest but the hand thing didn't seem right. "What exactly were they going to do?" I asked. "They're going to put oil on your head and put their hands on your head and pray over you," she answered.

I'm not sure how long I screamed. I think my eyeballs left my sockets. I could see the two men outside the room, pacing back and forth, anxious to come in and pour boiling oil on my head. Mom was mortified and left the room to try to explain (how could she know the depth of my fear?). She came in few minutes later and tried to bribe me with a present. Dad, who initially thought the whole scene was amusing, was trying to reason with me but I was beyond reason. They finally left. Mom was furious, Dad amused and I got the bribe as a Christmas present that same year. What was it? A tiny, black, toy grand piano that I played so relentlessly that Dad's great aunt gave us an old upright piano because they thought I had "talent."

I don't believe in talent - I had persistence. Those people who persist at anything; a sport, an art or overcome what others call a "handicap" are the people who rise to the surface, not because they're courageous/brave/heroes, but because they just want to DO whatever it is they've chosen to do. To do, and do it well.

Then there are people who put obstacles in the path of the persistent. These people rise to the surface in a different way...kind of like...well, use your imagination...and don't forget to flush!

When I had two legs - warning - nude photo!

2008-12-30T18:31:00.003-06:00

This is before all the trouble started. I was considerably older before I appreciated what my parents must have gone through. Does she have polio? Is she retarded? What's wrong with her? My father honed my sense of humor - my mother fielded questions with barbed comments, stuck with me through countless operations, prosthetic appointments and saved my knee. I don't know where she found the strength but I'll always admire her for it.

Where am I?

2008-12-29T18:58:00.002-06:00

I took some time off around Christmas. During that time I had a chance to reflect on this blog. Yeah sure, it's all about the fight for prosthetic parity, but somehow, I was getting lost in the whole thing. First, I hate writing about my personal battle (boring!), second, I've lost my sense of humor and finally, staying angry and upset and fighting is draining. That doesn't mean I'm through fighting, I'm just going to do it with a sense of humor.

I'll be back after the first of the year. Stay tuned,

KFG

I see the future...

2008-12-20T17:25:00.004-06:00

...and it ain't pretty.

I think the chances of KHPA/HCC having a meeting in December to change the contract are slim to none. Either that or they had their meeting and didn't invite me. Damn. You think?

Well, look on the bright side. The contract language is so outrageous that it makes them an easy target. That and their incredible lack of response to my letters. For months, the response of Blue Cross and Blue Shield of Kansas and the Kansas State Employee Health Policy Authority have said, THERE'S NOTHING WE CAN DO. IT'S OUT OF OUR HANDS. IT'S TOTALLY IN THE HANDS OF THE KANSAS HEALTH CARE COMMISSION. WRITE THEM! STOP BOTHERING US! What they neglect to tell you is that writing Health Care Commission (HCC) is the equivalent of pissing in the wind. Of course, that's their intention, in hopes you'll just go away.

Well, we wrote. We wrote and wrote and wrote and wrote and wrote and wrote and wrote and... did anyone get a reply? I haven't, and I'm at the center of this thing. If you got a reply, go out and frame it because you must be especially privileged. I haven't gotten a single reply or even the time of day except from one frantic phone call promising me everything would be set right at the December meeting (in response to the news that we were going to air a Call for Action report). The meeting and the promises have all vanished in a puff of smoke.

Go rent the movie, "Sicko" if you want to see the state of our Nation's Health care. If you aren't sick now, you will be after you watch it. Whatever you do, don't actually get sick, especially if you have health insurance, because you'll find out soon that you don't always get what you pay (and pay and pay) for.

Happy New Year!

KFG on "Call for Action" - NBC Action News Report

2008-12-02T23:10:00.016-06:00

Kudos to Jenn Strathman for an excellent job of reporting. You can read or watch the video at this link. There are less than 2 weeks to change a policy that considers the standard of care to be a "deluxe" item. In response to our pressure, the policy makers made the 2009 contract even more exclusive. In 2009, even comfort and convenience will be considered a "luxury." Of course, there is nothing convenient about an artificial limb, just as there are no "deluxe" components. These are arbitrary designations used by policy makers to weasel out of having to cover prosthetics for amputees. As a lifetime amputee, I can see how ridiculous and outrageous this is, but imagine if you just lost your leg, or if your child lost their leg and you came across these barriers. On top of struggling to learn to walk with a prosthesis, you have to fight your insurance company for a leg to stand on.

Of course there is never enough time, even in an extended interview, to tell the whole story. Some comments to the effect of "well, the hydraulic knee is good enough for me" or "it's not easy" are all very true. That's not what this is about.

This is about getting what is prescribed for you. Microprocessor knees are not suited for every amputee. Some amputees don't like them. What we must always consider is the amputee and what meets their functional needs. The simple hydraulic knee works really well for some people. Unfortunately, it did not work well for me, probably due to my size. I've had an opportunity to use both the hydraulic knee and the C-leg and (for me) there is no comparison. I've regained a normal gait, strength, some proprioception and my muscle mass was restored in the residual limb. I can walk farther with less fatigue. I've regained confidence in walking without having to plan every single step, I can look up and talk to people when I walk instead of staring at my feet, gauging the tilt of the ground and spotting what might trip me up. I can step to the side without falling. I can step backwards without falling. I can hold an infant without wondering where my foot is and whether my knee is going to collapse. I can walk down inclines without having to worry about whether my foot is directly in front of me and my weight is aligned perfectly over the center of the knee so that the hydraulics are engaged. If not, then you fall down in a heap! Instead of thinking that life as I knew it is over, I feel like my old self again! No boundaries!

Was the hydraulic knee "good enough?" Well, yes, it's better than no prosthesis at all, but that's not the point. The point is that there are prosthetic options that are considered standard of care. Indeed, so standard, that Medicare, Medicaid and the VA provide these medical options to patients whose physicians prescribe the appropriate prosthesis for their patient's functional needs. It should be up to the amputee and their care team to determine what is the best fit - not policy makers and bean counters.

Many thanks to all of you - friends, relatives, people I've never met - it all started with the "Leg Up" campaign. It's not over - keep fighting!

Notable Upcoming Events

2008-11-22T17:08:00.000-06:00

November 26 - I'm driving to Hays, KS to meet with KS State Senator, Janis Lee. Bob Barker of WKLLSG has organized this meeting. Our goal is to work with Senator Lee to further prosthetic parity legislation for KS.

December 2nd at 10:00 PM - My "Call for Action" interview airs on Kansas City's NBC Action News. We'll provide a link to the webcast after it's up for those of you who won't see it locally.

Great story on NPR

2008-11-14T11:53:00.001-06:00

Here's a great story that ran on NPR's market place in 2006. Yes, that's nearly 3 years ago; back in the dark ages when only 3 states had passed parity laws. Now there are 11 states with more states coming on board plus Federal bills in the house and senate. The argument from the insurance industry is that "The weight of these mandates has made it impossible for some employers to be able to afford to provide health benefits at all. What we need is more research!" Well, folks, here's the power of looking backwards. More research since 2006 has shown that the cost of providing prosthetics on par with other medical coverage will cost the consumer about 25 cents a month. Woo. Then again, maybe they could trim some from the CEO's salary?

Congratulations to...

2008-11-10T17:49:00.001-06:00

...KS State Senator Janis Lee on her re-election. Senator Lee has taken the time to listen to the need for prosthetic parity legislation in the state of KS.

...Congressman Dennis Moore on his re-election. His office has taken the time and effort to inquire about my "situation" and hit the same stone wall I did. Congressman Moore...please support HR 5615 and add your name as a Co-sponsor of this bill.

...Congressman Emanual Cleaver on his re-election. Hey - I voted for you just so I could keep nagging you about co-sponsoring HR 5615. My letters to your office are ignored. Well, except for the one where you told me you would support the mental health parity bill when I said PROSTHETIC parity. The mental health bill sweetened the pot for the bailout, so that's done and all behind us. Come on. Congressman Lacey in St. Louis is a co-sponsor. We look like slackers here in KC.

Speaking of slackers...there's not a single Kansas representative or senator listed as a co-sponsor in support of HR 5615 or S 3517! Want to see if your senator or representative is listed? Look here. Get after them! The election is over. Time to get back to work!

Many Updates

2008-11-10T16:27:00.000-06:00

There's been so much going on that it's hard to keep up:

October 6th - Dave and I celebrated our 20th wedding anniversary. Wow. What a milestone!

October 9th - Work related: received an incredible score on my grant proposal! Unless the economy goes completely belly up the grant will be funded in April for 2 years. Of course, a year from now I'll be writing the 5 year proposal. Given the enthusiasm expressed by the reviewers, I'm hoping this will keep me busy for a few years. Ironically, while telling a friend about this, he said, "Gee, so now you are out earning money that will get your salary off the state budget and yet the state can't find it's way to getting you the leg prescribed for you?" Hmm...there's a point.

October 17 - The State insurance commission writes and says that my insurance policy is a self-funded program administered by BCBS of KS and sponsored by the State of KS and as such, the KS Insurance Department does not have regulatory authority over this matter. More regrets, the usual. However, they did ask questions of BCBS and got the usual response (no!) and BCBS "certainly does sympathize with Ms. Gustafson's situation." My "situation!" OK - that's novel. The commission asked specifically what was prescribed and BCBS danced around that one too. Then they went on to say that they are "responsible stewards of all our customer's health care dollars" and that they have a responsibility to ensure that only medically appropriate and eligible benefits under their contracts are reimbursed. Well, now I feel MUCH better knowing that they're looking after my health care dollars. Whew! We'll just ignore the fact that the medically appropriate prosthesis was prescribed and you'll get what KHPA/HCC thinks you need and like it.

At least somebody finally 'fessed up that it's all about the dollars!

October 30th - One year anniversary of my amputation. So...how do I feel about that? Frankly, like I got more than I bargained for. I really expected to be farther along, more like...normal? I went out to dinner with my best friend, Jeannine, to a nice French restaurant "Le Fou Frog." Jeannine graciously treated me to dinner and reminded me how far I had come in a year. I guess it makes a difference which side of the table you're sitting on. From my perspective, everything is still awkward. What really cost me were the months sitting around in the test socket waiting for KHPA to come through. When I finally realized that they weren't losing any sleep over me my physical condition had decayed. When I got the C-leg, I started walking again and then my residual limb started bulking up. ARGH! Months of shrinking since the surgery and then it goes the opposite way! Now I have a whole new set of problems. While the C-leg is wonderful, the socket is literally squeezing the life out of me. For a while my leg was turning blue and cold. We've done some tweaking and now I'm only miserable from early morning until about 4 PM. The scary part is that I'm not even remotely close to being as fit as I used to be so it's back to physical therapy and with that, more bulk, more squeezing and heaven forbid, what if I have to get a bigger socket?! Is that a convenience item? After all, circulation is comfortable. Gosh...I don't know, should I just wait until my leg turns black and falls off?

November 4 - The December 3rd meeting at KHPA has been cancelled because most of the members can't make the meeting. There's supposed to be an alternative date announced...soon? I suggested that some of the members come to KC to learn more about prosthetics since I attended an excellent seminar on rehabilitation of the lower limb amputee and I thought some very valuable points were made. After all, it's better to make informed decisions. Nope, they prefer to get guidance on medical necessity from the health plans they contract with. Wow...doesn't this drive home who is making health plan decisions for you?

On that note, I attended a meeting to discuss a national health care plan. Frankly, the thought of a government controlled health care plan gives me the willies because...HELLO...isn't that what I have?! However, after listening to all sorts of horrible stories from private insurance, etc., it's clear that whatever it is we're doing isn't working. What I don't get is why, if my health insurance were Medicaid, Medicare or VA, I wouldn't be having this discussion because the prescribed prosthesis would be covered. So, what's the deal?

We're really not much further than we were a month ago. The arbitrary and utterly ridiculous language in the contract has to be changed. To selectively deny amputees access to technology that, at best, restores function to about 30% of the lost limb and then to insult us by saying that "comfort and convenience" are luxury items is discrimination, pure and simple.

Petition for KS Residents

2008-10-19T17:30:00.001-05:00

If you're a resident of KS, please sign the petition to change the KS State Employee Health Policy prosthetic coverage so that it's on par with Medicare and State Medicaid. You can find the link here. Thanks go to Bob Barker of the Western KS Limb Loss Support Group for starting the petition drive. We need 10,000 signatures by December 15, 2008.

Time is running out

2008-10-11T14:21:00.004-05:00

We must get this policy changed before the new contract year! Here is a new letter for KS residents. Don't forget to change the text in [red]:

[Date]

Duane A. Goossen, Chair and Secretary of Administration
Kansas Health Care Commission
Room 900-N, Landon State Office Building
900 SW Jackson Street - Topeka, KS 66612

Dear Mr. Goossen,

By now you are aware of the limitations in the state employee health care plan regarding prosthetic coverage for amputees. Despite our efforts to change the restrictions facing state employee amputees, the contract reads:

"Coverage is limited to the basic (standard) appliance or device which will restore the body part or function. If you elect to purchase a prosthetic appliance or device with deluxe enhancements or features such as electronic components, microprocessors or other features designed to enhance performance, the Plan is only responsible for the amount that would have been allowed for a basic (standard) appliance. You will be responsible for paying the additional cost of the deluxe enhancements, electronic components, microprocessors, performance enhancements, comfort, convenience or luxury items."

The wording in the contract is identical to the limitations placed on durable medical equipment (DME) despite assurances from KHPA that limb prostheses are under medical coverage. There is nothing deluxe, luxurious, comfortable, performance enhancing or convenient about a prosthetic limb. Who determines whether a prosthesis is comfortable or convenient and thereby denied? It reflects badly on the state of Kansas when state employees are not afforded the same quality of prosthetic care as KS Medicaid recipients.

At the present time, it is illegal in 17 states to sell policies having such arbitrary exclusions and parity laws are pending in 30 additional states. Federal legislation has been introduced in the House and Senate to make coverage at least equal to that offered by Medicare as a national requirement.

Please change this policy language before the beginning of the new contract year.

Sincerely,

[Your name and address]

Cc: Governor Mark Parkinson
Capitol, 300 SW 10th Ave., Ste. 212S
Topeka, KS 66212-1590

Doug Farmer
KHPA – State Employee Benefits Plan
Room 900-N, Landon State Office Bldg.
900 SW Jackson Street
Topeka, Kansas 66612

Bob Rocks!

2008-10-10T08:30:00.001-05:00

Bob Barker is an activist for prosthetic parity. He was instrumental in passing the parity law in Massachusetts and then moved to KS. Lucky us! Visit his site to learn what you need to do as a KS citizen to bring prosthetic parity legislation to KS.

Pinched

2008-10-08T08:53:00.000-05:00

What a crazy ride I'm on.

KHPA communications now contain language with words like "hope-wish-try" and the December HCC meeting "might" deal with prosthetics but now, even that sounds iffy. I'm not supposed to take the new contract language personally, but what's a person to think after months of communication - OK, I'll admit it was pretty one-sided communication - and then the contract language is reworded to become more arbitrary, archaic and capricious? We do get a $40 a month discount for not smoking though. At that rate, I should be able to recover the cost of the C-leg in about...375 months or a little over 31 years. Fortunately, I'll be eligible for Medicare before then.

The good news is that the KS parity activists, led by Bob Barker, now have their teeth in this thing and it's not just me, the annoying voice in the background. The more the merrier - party on, people.

All of this detracts from the joy of the new leg and there are some shining moments. The down side is that I have developed some bad habits from the old leg that I have to overcome. Fear of falling is the biggest and that keeps me from using the C-leg as it's designed. The socket is still giving me grief - seems I might have *gasp* stopped shrinking so there's this constant argument about who is going to conform first? My leg or the socket? Flesh or carbon fiber? Logic says flesh, but suddenly my flesh is no longer weak and is fighting back. Nonetheless, I've had a few glorious moments where everything worked perfectly and I saw my reflection in a glass window as I walked by. Beautiful! I couldn't believe I was walking so well! I know it's there, it will just take me a while to gain control.

So...sadly, I think we're back to square 1 in our fight with HCC/KHPA/BCBS of KS. I got that 800 pound gorilla off my back for about 24 hours, but it's back now!

My Hair is on Fire!!

2008-10-01T19:53:00.007-05:00

Today is October 1st, the day they roll out the insurance contract for 2009. There was ambiguous language in the '08 contract regarding prosthetics. I had several discussions about this with KHPA and was assured that it would be made "more clear" for '09. Still giddy from my phone call last night, but also realizing that the contract was written LONG before my phone call, I didn't expect a revision in my favor. Instead, what I found made it abundantly clear that the discrimination towards amputees continues:

"Coverage is limited to the basic (standard) appliance or device which will restore the body part or function. If you elect to purchase a prosthetic appliance or device with deluxe enhancements or features such as electronic components, microprocessors or other features designed to enhance performance, the Plan is only responsible for the amount that would have been allowed for a basic (standard) appliance. You will be responsible for paying the additional cost of the deluxe enhancements, electronic components, microprocessors, performance enhancements, comfort, convenience or luxury items."

You talking to ME?!

I feel really ripped off. I wanted the performance enhancing, comfort model with the convenience features, luxury socket, deluxe-enhanced toes and all I got after paying 25% of my after-tax, after-insurance-premium annual salary was this microprocessor. Dang.

Pinch me...

2008-09-30T20:13:00.000-05:00

I've gotten so far behind. Here's a quick update.

Went to Winfield had more fun than seemed possible came home decided my quality of life is more important than anything so got the C-leg ... what? Yes, I did it. As in, I got out the checkbook and started signing. I have no right to appeal unless I pay out of pocket, so this really begins the process. How is it? Nothing short of a miracle. It will take a few weeks for me to "settle in" to the new socket but already it's so far and above what I've put up with for a year that I've worn myself out. "Look - I can sit, stand, move, walk without thinking or looking at the ground!" When I get it under control, I'll post a video and some photos.

But, now for the really big news.

A friend sent my blog to another friend who contacted the local "Call for Action" reporter who called me about a potential story. That resulted in me contacting our (work) public affairs director who contacted the director of KHPA and, after months of nonsense and frustration. I finally, FINALLY got the straight story. It took a total of 4 women a matter of 6 hours to cut to the chase! The director of KHPA, Marci Nielsen, called, apologized and listened. KHPA and HCC are going to meet in December to discuss revising their prosthetic policy to match that of Medicare (the industry standard) which includes electronic components. If they have all their ducks in a row, this could be decided as early as December '08 and no later than April '09.

Given what I know about Medicare coverage, there is a very good chance that this will pass. I'm afraid to say much more for fear of jinxing it, but this most informative, cohesive and encouraging news I've received to date!

Thank you - all of you - for your support and the "leg up." It's not over but I think the ball is finally rolling in the right direction! Of course, you're all welcome to join me at the meeting in December!

Federal Campaign Progress!

2008-09-24T19:19:00.000-05:00

Senators Olympia Snowe (R-ME) and Tom Harkin (D-IA) introduced the Senate version of the Prosthetic Parity Bill this month. Legislation is now moving through both chambers. Thank you Carol in Maine and Jackie in Iowa! Your letters made a difference!

Lawrence Journal World

2008-09-21T21:19:00.001-05:00

My recent letter to the editor.

Shameful Practices

2008-09-13T16:15:00.005-05:00

Blue Cross and Blue Shield of Kansas asked a board certified prosthetist to review my case and address some of the issues I raised, particularly with the language 'standard' and 'deluxe.' In the end, I am still denied the microprocessor knee because “electronic items are excluded by policy language.” However, this anonymous prosthetist took them to task:

***************
'Deluxe' items provide function beyond the restoration of the lost body function or part. On this basis, I agree fully with the member [KFG] that there is no such thing as a ‘deluxe’ prosthesis since none come anywhere close to fully restoring the lost functions of the intact limb.

A ‘basic’ or ‘standard’ prosthesis is one that reflects the best available evidence and clinical judgment regarding those alternatives most likely to enable the person to reduce the impact of the functional losses cause by the amputation. Based on the information reviewed, I would consider the prescribed prosthesis to be a ‘standard’ device in this case.

While the denial of the electronic codes will not render the prosthesis unusable, it will clearly make it less effective in enabling normal activities of daily living. Based on the best information to date, it is to be expected that – without the electronic features – the prosthesis will be more difficult to walk with, less secure, less responsive to changes in terrain or cadence and less effective in permitting normal activities of daily living.

The fundamental problem we are all struggling with here is the archaic language of the policy and its arbitrary exclusion of electronic components from consideration.

Electronic technology has been accepted as a ‘standard’ mainstream alternative for appropriate prosthetic candidates since 1970. As the member correctly points out, it is ironic that, while her State insurance policy excludes the electronic elements of her prosthesis, she would receive this level of care if she were on Medicaid or Medicare. From a prosthetic standpoint, she would be better off to give up on working and accept Social Security Disability Income and Medicare coverage and/or to declare bankruptcy and become a Medicaid recipient.

At the present time, it is illegal in 11 states to sell policies having such arbitrary exclusions and parity laws are pending in 30 additional states. Federal legislation has been introduced in the House to make coverage at least equal to that offered by Medicare as a national requirement.

In summary, the denial of these codes must be upheld because they are specifically excluded by the policy. Exclusion of these items will result in a prosthesis that is less secure, less responsive and less effective than the prescribed ‘standard’ electronic knee.

I hope these candid responses will prove helpful in understanding all of the complex issues brought to light in this case.
***************
Compelling, isn’t it? What was the BCBS response? “Based on our consultant’s specific comments about this case, our consultant is unable to certify medical necessity.” I hope you're snorting with indignation.

To protect my physical and mental health I will purchase the microprocessor knee myself – a significant out of pocket expense - but I'm not giving up the fight. I’ll keep fighting for parity and will use those powerful words above to make my case. Keep fighting with me so we can make these shameful practices illegal.

Shame on the health care policy makers in Kansas!

A few more suggestions

2008-08-31T16:45:00.003-05:00

Congressman Dennis Moore has offered to look into this and I thought it would be nice just to say, "Thanks." I've included a link to his office. He only accepts email from KS constituents, but you can drop a little "Thank you" note in the mail to his Overland Park office if you don't live in KS.

Also, Governor Sebelius seems to be a compassionate and caring person. Perhaps a copy of your letter to KS HCC might make her aware of the situation for her state employees. You can write her here.

I'm being denied out of ignorance - a lack of understanding about the kinds of components and what they do. All they see is the bottom line which usually means money. Nonetheless, the bottom line is still about the disparity between Medicaid and State Employees and the Governor needs to be made aware that her State Employees with limb loss are under served - POLITELY made aware.

How you can help

2008-08-25T08:48:00.005-05:00

I've been told to write the KS Health Care Commission if I want them to change their policy. If it's a letter they want, then let's get them some letters! The instructions are below. Here's the suggested letter, but write whatever you want. You can be as passionate as you like, but PLEASE - be polite!

Next, take a moment to check the prosthetic parity law in your state by going to the Amputee Coalition of America website. If your state has not passed a prosthetic parity bill, please send a letter (scroll to the bottom of the ACA link) to your state and/or federal representatives. The federal bill is House Resolution 5615. Senator Senator Elizabeth Dole of North Carolina is considering sponoring a senate bill. Please encourage her and don't forget this is an election year.

Giving "A Leg Up"

2008-08-25T08:39:00.006-05:00

In the world of horses, giving someone “a leg up” has meant taking just a moment to give someone a boost up on their horse – so they can take over from there.

Taking a minute now to give Kathleen a leg up will help her retake charge of her own life and will subsequently benefit other amputees.

Instructions: Copy/paste the sample letter and personalize before printing and mailing – it might be just a short line about how you know Kathleen, or something special you know about her or how she has helped you. (Traditional paper and stamp letters have a very personal impact.) Remember to delete the red “insert here” sentence.

Thank you for taking the time to give Kat “A Leg Up”.

Sample Letter to KS Health Care Commission

2008-08-25T08:30:00.003-05:00

(Insert Date)

Duane A. Goossen, Chair and Secretary of Administration
Kansas Health Care Commission
Room 900-N, Landon State Office Building
900 SW Jackson Street Topeka, KS 66612

Dear Mr. Goossen,

I am writing on behalf of Dr. Kathleen Gustafson, a state employee at Kansas University Medical Center. (Insert your personalized association with Kat here)

Dr. Gustafson was advised to write to you and ask that you reconsider the policy that refuses to cover a prosthetic microprocessor knee. Current policy considers the knee to be "deluxe" and therefore, a non-covered item. Concerned that Dr. Gustafson’s single voice may not be heard, I am writing to plead her case.

Prosthetists, the FDA, CMS/Medicare, AAOP, the VA, and over 150 insurance companies have recognized and accepted microprocessor-controlled knees as a standard level of prosthetic treatment. They have been used in thousands of above knee amputees - since 1997 in Europe and Canada and 1999 in the United States. Further indication of acceptance of microprocessor-controlled knees is Medicare’s assignment of L-Codes L5847 and L5989 in January 2002, the code L5848 in January 2003 and the code L5846 in January 1996. Research and patient reports show the microprocessor knee to be superior to simple hydraulic knees with improved patient function and mobility, fewer falls and injuries and less wear and tear on the sound limb.

Microprocessor knees are also standard of care for KS Medicaid recipients. Why is the standard of care different for KS State Employees? Dr. Gustafson is a valued employee of the State’s premiere medical and research center and her mobility is essential to her job and highly active lifestyle. Yet, the ability to walk normally, without assistance, is considered a luxury? Please reconsider and change this policy.

Sincerely,

Your name and address

Disparity in Action

2008-08-11T17:22:00.004-05:00

KS Health Policy Authority weighed in again and said that they will provide me with a prosthesis that is both medically and functionally necessary, no dollar limit, as long as it doesn't contain "electronic components." That's like saying, "We'll provide you with any car you need to drive to work, pick any car on the lot! Just pick one with no motor." When asked why it's denied the answer is the same, "Because it's electronic." Yes...but WHY? "Because it's electronic." Reminds me of my mother 50 years ago..."Because I said so."

I can understand adopting a policy and sticking to it, but here's the sticky wicket -

Not only do state employees fall under the umbrella of KHPA, but so do KS Medicaid recipients. Of course, since we all fall under the same policy, the rules apply to all. Right? Wrong again. KS Medicaid recipients, under the KHPA Policy, can, and do get the prosthesis along with the electronic components. KS State employees cannot.

So here we are again. My quality of life is decided by KHPA where disparity is openly practiced. Don't think for a minute that I'm saying that KS Medicaid recipients aren't entitled to full prosthetic coverage - that's not my point. The point is that KS State Employees should be afforded equal coverage.

Why I'm here

2008-07-26T16:13:00.001-05:00

Since losing my leg above the knee in October 2007, it seems the world is filled with heroic and inspirational examples of amputees that defy all odds. Fitted with modern, high tech components, they are no end of inspiration. Oscar Pistorius can compete in the Olympics, Sarah Reinertsen is the first woman amputee to compete in the Ironman and commercials show her stepping out of a luxury car for a run in the park. An amputee walked down 70 flights of stairs to escape the World Trade Center thanks to his microprocessor knee. Ronan Tynan, a bilateral amputee, is an equestrian and world class tenor. Molly the Pony survived hurricane Katrina only to be attacked by pitbulls and lost part of a front leg but now gets around on an equine prosthesis and is an inspiration to others. Iraq war veterans are undoubtedly the most visible example of limb loss and are probably doing more to draw attention to the current state of the prosthetic industry. The industry has had to meet the demand of these young men and women who want, and deserve, to be restored to their former active lifestyles. When faced with making a choice to amputate my badly damaged and irreparable knee, I studied all of these examples of extraordinary amputees getting on with their lives, running, jumping, riding, swimming, cycling, even singing! Their ability gave me courage and confidence that I would be fine.

How did I get to this place in life? I had a birth defect as a child that resulted in a non-union fracture of the tibia – the big bone below the knee. At age 11, there were no options and my parents discussed amputation with me. I saw it as a ticket out of jail and I was right. As a below knee amputee, the world was mine for the picking. I knew no limitations. I was warned by my doctors that, “when you get older that knee will give you trouble.” They were right. I got older and my knee blew up after a particularly bad fall.

After the surgery, I awoke to a very different world. I was no darling of the media, just an average, 54 year old scientist who needed a prosthesis, working for the State of Kansas. I wasn’t planning on running a marathon, I just needed the components that could return me to where I was functionally before the accident. My insurance covers a temporary and a permanent prosthesis. The temporary prosthesis is just that – a temporary, bare bones prosthesis that gets you up and walking again. There are essentially 3 parts to an above knee prosthesis: 1) the socket that fits over the residual limb (the part that’s left) which must fit like a glove or you have no control over 2) the knee, which can range from a simple hydraulic knee to a microprocessor knee depending on your functional demands, and 3) the foot, which can range from a simple, low-heeled walking foot, to a foot that adjust to different heel heights, to a running blade. The residual limb will shrink after amputation, a normal process, that requires several new replacement sockets to maintain fit. I was fitted with my temporary prosthesis in December 2007.

For most of January and February I adjusted to learning to walk again. There was pain from the amputation, I was not confident that the hydraulic knee would work and I was shrinking out of the socket at light speed. By March, a new socket was required. Gaining the control with the new socket made a difference and I was finally able to get rid of the crutches and wheelchair. Inspired that I could now walk in a straight line with no support, we began the process of planning for the permanent prosthesis.

First I underwent an activity assessment. While I’m no high-profile athlete, I’m no slough-off either. I used to walk about 2 miles a day across campus. I lift weights, kayak, ride horses, cross-country ski, hike, hunt and fish – if I can’t be outdoors with my horses and dogs I see no point in living. Physical fitness is a priority and losing a leg is a small obstacle as far as I’m concerned. After all, if Sarah Reinertsen can do the Ironman, I can do what I want to do, right? Sorry, but that’s wrong. Who determines the limits on my physical ability? Not me, not my physicians, not my prosthetist, but my insurance company.

The administrators of my insurance contract considers the components necessary to build my permanent prosthesis and meet my activity level to be “Deluxe” and therefore, not covered. Wrap your head around that word. I see luxury items as yachts, maybe a Mercedes, a Rolex watch. A “deluxe” prosthesis? Is it gold-plated, fur-lined and diamond encrusted? Hardly! I don’t need a “deluxe” prosthesis, I just need to walk and do the things I do.

As a matter of fact, the prosthetics industry has no basic, standard or deluxe legs on the shelf. Each prosthesis is matched to the wearer’s activity level. A knee designed for high activity and sports will not be suitable for an 85-year old grandmother and Grandmother’s knee won’t help the athlete ski down the mountain. When did limbs cross the boundary of being an essential part of our body to luxury options?

The dirty secret is that there is no prosthetic parity. While the Veteran’s Administration, Medicare and Medicaid cover microprocessor components, many private insurance companies do not. It’s up to the individual insurance companies or plan administrators to determine coverage, and thus your quality of life. Some put a cap on the price, usually a ridiculous amount that wouldn’t pay for a big toe. Others give you “one limb per life” which leaves me asking, “How many lives do I get?” Others consider a prosthetic limb to be “cosmetic.” If that were the case, I should be able to get a face-lift, breast implants and a leg from my local plastic surgeon! Ten states have now passed prosthetic parity laws which require insurance companies to cover prosthetics the in the same manner as they cover other medical procedures and devices. Missouri is in the process and Kansas currently has no existing legislation. A Federal Prosthetic Parity bill was introduced on March 13, 2008 (House Resolution 5615).

I find it incredibly ironic that I work for the State of Kansas at the premiere medical and research facility, yet I am not afforded the same prosthetic coverage as a patient with Kansas Medicaid or a Kansas veteran. So, I decided to fight. After 4 months of appeals and documentation that the prosthesis is medically necessary and that my functional level meets and exceeds those needed to operate the prosthesis, I’ve been told that I’ve exhausted my appeals and that “We’re sorry there wasn’t a more favorable outcome for you.” Well, I’m sorry too. I’m probably sorrier than they are. As much as I hate the public eye, I’ve been complacent too long.

This is the beginning of my quest for prosthetic parity.