Hmmm....

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

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

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

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?

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!

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

Watch CBS Videos Online

Striking Parallels

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

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

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 are 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!

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?

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...

...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

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

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

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...

...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.

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.

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]:

[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