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. 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.