Tuesday, December 30, 2008

When I had two legs - warning - nude photo!

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.

Monday, December 29, 2008

Where am I?

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,


Saturday, December 20, 2008

I see the future...

...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!

Tuesday, December 2, 2008

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

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!

Saturday, November 22, 2008

Notable Upcoming Events

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.

Friday, November 14, 2008

Great story on NPR

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?

Monday, November 10, 2008

Congratulations to...

...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

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.

Sunday, October 19, 2008

Petition for KS Residents

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.

Saturday, October 11, 2008

Time is running out

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]:


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.


[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

Friday, October 10, 2008

Bob Rocks!

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.

Wednesday, October 8, 2008


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!

Wednesday, October 1, 2008

My Hair is on Fire!!

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.

Tuesday, September 30, 2008

Pinch me...

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!

Wednesday, September 24, 2008

Federal Campaign Progress!

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!

Sunday, September 21, 2008

Saturday, September 13, 2008

Shameful Practices

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!

Sunday, August 31, 2008

A few more suggestions

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.

Monday, August 25, 2008

How you can help

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"

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

(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.


Your name and address

Monday, August 11, 2008

Disparity in Action

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.

Saturday, July 26, 2008

Why I'm here

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.