Awareness and understanding of Multiple Sclerosis.

It finally happened to us. I always knew in the back of my mind it would, but I thought: The lot at Costco, that will be the place. That’s because there are a thousand handicap spots that always seem to be full, with thousands more people waiting off to the side with their blinkers on, ready to hit the gas to make sure they get into that blue-lined spot. It gets pretty contentious in the Costco lot.

And considering the current social climate we are living in, with many people taking their cue from the likes of radio personalities that spew hate, fear and blithe ignorance, I am surprised it took this long. Everyone, it seems, is angry.

It was Christmas eve and we finally got a break from the rain. Paul and I decided to drive over to the beach and take the dogs out for a walk. As you may know, Paul is logging his miles for his Walk While I Still Can campaign, and the beach is good for Paul. It doesn’t hurt as much as the sidewalk.

We pull into the handicap spot and start to unload the dogs. An elderly woman, despite her full head of silvery-white hair and aged face, was moving along at a brisk pace as she made a beeline for us. She was quite erect and in good shape for her age. Very good shape.

“Excuse me,” she said with a large, kind of Grinchy smile, “You can walk, so why are you parked in a handicapped spot?”

There was a certain passive-aggressive thing going on with her approach and tone.

Paul looked up at her, “I can walk, for now, but I have Multiple Sclerosis. I’m in a whole lot of pain when I walk and sometimes I don’t walk so well.”

I chimed in after the fact, “He has Multiple Sclerosis.” Very effective there, Margaret.

“Oh,” she said. “I was just wondering why since you looked fine to me. I’m sorry, just wondering, okay, Merry Christmas.”

She stood there for a few seconds, waiting to see if we had anything else to say. We didn’t, so off she went.

Now, a couple of things here. First, when you look at Paul walking for any amount of time, you know something’s wrong. But she didn’t have that time to observe him before she approached two complete strangers.

Paul walks funny. He’s got a limp for one thing and his legs don’t quite move themselves the way yours and mine do as he moves along. That’s because he can’t feel his legs. What he does feel is a combination of numbness, tingling, hot burning pain or a complete dead sensation, as he puts it. And he never knows, from one day to the next, what he is going to be capable of doing. Some days are good, some not so much.

Second, I missed my opportunity to educate this woman; to make her aware of this disease and what it does to those who have the misfortune of waking up one day and being diagnosed with MS. I was too angry to speak.

Why was I so angry? Probably because I operate on the notion of I wouldn’t do that to you, so why would you do that to me? I thought it was pretty nervy and quite rude of her to ask such a question without first knowing the facts. Trying to understand what someone else may be going through is key to many issues we face. Making blind assumptions usually gets us all in trouble.

Was she hoping to catch someone using a handicap sticker on their car illegally? Maybe. But what she did do is approach two strangers without the slightest notion that something could be wrong.

What I would have told her is this: My husband woke up one day, five years ago, and couldn’t feel his left leg. At his age, at any age really, that’s scary. He was told 10 days later he has Multiple Sclerosis.

If you don’t know what it does it’s a chronic, debilitating disease. There is no cure. It affects the central nervous system and leaves its victims helpless as to what their bodies can and can’t do. One person with MS may be in a wheelchair, while another may still be walking along. People with MS can’t always control their bodies.

My husband was on chemotherapy for his disease. People with MS have many battles that have nothing to do with their bodies. Usually, the battles are with their insurance carriers who don’t like to pay. Other battles are with the pharmaceuticals who see MS patients as a gold mine and don’t really want to cure the disease but make drugs that are expensive and keep them going–barely. So, let me make you aware. My husband can walk. But just barely, and for us, his family, that’s frightening because there are so many other things going on with his disease and his body. That’s why we are parked here. And you can help make others aware too now. Merry Christmas.

A guide on awareness I wrote in 2009 and posted again earlier this year, can be found here.

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The GOP using states’ rights to repeal health care reform. What about ERISA?

The GOP loves big business more than they care about those constituents who elect them. Even thought the GOP uses states’ rights as a big rallying cry for repealing health care reform, they have been totally against amending the federal law that strips the states of their rights–when it comes to health insurance.

Let me explain.

ERISA laws or the Employee Retirement Income Security Act of 1974 set standards for pension plans so that when employees retired (and retire even though 401k plans have replaced most pension plans) they can breathe some sigh of relief that their employers did not raid their pension plans leaving them penniless for retirement. That’s one of the things it does, but it does a lot of other things as well. It covers employer-based health insurance plans, 401k plans and some severance plans.

The unintended consequences of having a federal law cover these things, especially health benefits, are that these federal laws pre-empt state laws.

The law limits the abilities of state legislatures to regulate many types of health insurance, it restricts the kinds of remedies that states can authorize (such as a patient’s right to independent appeal of denials or to see specialists) and it can limit the ability of states to experiment with novel ideas for health care solutions.

Two real-life examples of how our state laws and consumer protections are meaningless if we have been abused by our health insurers: The first one is in the Michael Moore movie, Sicko, and features a child named Annette Noe. This is also brought up in Wendell Potter’s book, Deadly Spin. Annette needed cochlear implants in both her ears but CIGNA only paid for one, calling implants in both ears, “too experimental.”

Think Progress featured another child in November of last year, Madison Leuchtmann, who CIGNA also refused to pay for her cochlear implants with the knowledge that this child may remain deaf the rest of her life if she did not receive the implants:

Unfortunately, the Leuchtmann’s family insurer, Cigna, has issued “one denial after another,” flatly refusing to cover the $20,000 bill for the implant. In a written statement to the local news station Fox 2, Cigna explained, “It is not unusual for commercial benefit plans to exclude hearing assisted devices,” prompting Dr. Clary to angrily respond, “This is obviously medically necessary. You have a child that has no ear canals!” Dr. Clary also told Fox 2 that he sees these sort of denials “on a weekly basis.” Watch Fox 2′s report:

Now in Annette Noe’s case, her father used the power of Michael Moore’s movie to get Annette her implants. I have no follow up news for Madison. But more importantly here, could Madison’s parents sue CIGNA to make them pay for her implants? The answer is no. And that’s because of ERISA.

And why is that? Let’s turn to an ERISA expert, an attorney, Richard Johnston and his blog, The Problem is ERISA:

As of now we have a situation where the law tells insurers they face no meaningful consequences if they deny care improperly or even commit outright fraud. As one federal judge has commented, “if an HMO wrongly denies a participant’s claim even in bad faith, the greatest cost it could face is being compelled to cover the procedure, the very cost it would have faced had it acted in good faith. Any rational HMO will recognize that if it acts in good faith, it will pay for far more procedures than if it acts otherwise, and punitive damages, which might otherwise guard against such profiteering, are no obstacle at all.” Insurance companies, of course, are not charities, but corporations; their boards are subject to a fiduciary duty to maximize shareholder value. If it is possible to accomplish this by mistreating insureds, then it follows insurers will do precisely that (and believe me, they do).

There is no incentive, financially speaking, to pay for benefits and these include treatments, transplants and disability benefits that are all covered under the ERISA umbrella.

Where does that leave the GOP who are so “anti-big government but pro-states’ rights? They side with those who would keep these laws in tact every time: The Health Insurance Industry. Disturbing about both groups is their love of thumbing their noses to the new (unconstitutional, as they say) federal law while remaining steadfast on guarding another federal law that hurts the common good. I guess it’s only unconstitutional when it hurts the corporate common good.

Every time ERISA has come up in Congress for some tweaking, guess what has happened? AHIP hires lobbyists, front groups (like this National Coalition on Benefits, they are a real gem) and this group; they all go into action and We, the People, are left in serfdom at the corrupt feet of the Insurance Lords.