S.773 in Committee

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, “Insurance Fairness for Amputees” which is currently in the Senate committee on Health, Education, Labor and Pensions.

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

This is not a mandate or a hand out. It is only fair. Prosthetic limbs would be covered like any other medical expense according to the plan contract. States that have passed the insurance fairness laws have shown that insurance premium costs would increase by only pennies a month.

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,

Investigative Report on Insurance Discrimination

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...

Tonight at 10:00 CST - KCTV5 Investigative Report

Changes, Some Good - Some bad

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

ACA Conference

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...

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

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

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...

...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!

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.