Sunday, November 21, 2010

More on TSA

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. 

Thursday, November 18, 2010

TSA - No Disparity Here!

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. 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?!

Thursday, November 11, 2010

Why I voted against...

... 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?

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!

Friday, July 30, 2010

Disparity in Action

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.

Friday, April 23, 2010

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

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.

Saturday, April 10, 2010

Two things

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.

Thursday, January 21, 2010

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

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.