Irascible Ink

I’ve been AWOL from this blog for a few days, adjusting to a new, more hardcore workout regime. It involves some interval training cardio, spliced between weight circuits, and quite frankly, has been kicking my butt.In good news though, according to PTE, I’ve got two degrees of dorsiflexion in my left ankle–although my right is staying stubbornly at zero.

Also, I’ve been grappling with writing this post about health care reform. It’s an issue I’m passionate about, and one that I wanted to be sure to address rationally and truthfully, without ranting like a lunatic. It’s difficult though, with many newspapers shouting that yesterday’s Massachusetts election signals the death knell for health care reform for this generation. For most people health care is a political issue , but for me, and many other people with chronic illnesses and disabilities, it’s a personal issue that wakes me up in the middle of the night in a cold sweat. Without reform, there is a chance that some day the Botox treatments that have so recently given me a new lease on life could some day become unattainable.

Currently, I have a good job and good health insurance–for which I am grateful every day, even when meetings drive me up a wall. But there’s fear growing and spreading through my belly, that one day I’ll lose a job one day and, therefore, my insurance. Because I have cerebral palsy–a pre-existing condition according to  insurance companies–I am basically ineligible for affordable independent health insurance. Any insurance company that would agree to cover me as an individual would likely charge me through the nose and jack-up the deductible, which would make it functionally impossible for me to be insured. (The term “pre-existing” makes me absolutely bonkers, by the way. Pre-existing what? I was breathing?!) I’ve read enough to understand that the “pre-existing condition” exclusion was meant to encourage people to carry health insurance, instead of waiting until they were diagnosed with an illness to begin paying premiums.  This makes some business sense, otherwise no one would have insurance until the moment they needed an expensive treatment that they couldn’t pay out of pocket.   But its use as a basis for denying people coverage, or coverage for certain conditions if they are insured,  is outrageous.

For years the fear of being uninsured has forced me to stay in jobs that were miserable and/or underpaying. It has limited my job prospects in that I can never accept a contract position, no matter how perfect it might be for my career, because of a lack of employer-supplied insurance. When I go in for a job interview one of the first questions I ask is about health insurance. If the only available option is an HMO, which requires a pre-authorization for any specialist visit, then I can’t even consider the position. I’d be forced to spend countless hours calling or going back and forth to my primary care doctor for referrals before I could see folks who could actually help me. The likelihood that someone in-network would have expertise in treating adults with CP? Practically zero. Then I’d need to spend hours filling out paperwork explaining why none of the in-network doctors were acceptable.

While there is government assistance for people with disabilities, I’m ineligible because I make a decent living. I get that financial conservatives don’t think it’s fair that we should all pay to defray the cost of health care for those who cannot afford it. But what kind of sense does it make that the only way I could qualify for insurance if I lost my job, or could only find a job without insurance, is to remain unemployed and stop contributing to the tax coffers? Whom does it benefit to force people like me to become dependent on the state in order to receive affordable medical care?

I understand that the health insurance companies want the health care industry to run like any other business, for profit–which is their reasoning for denying coverage for sick (expensive) people. But if it’s going to be run like a business, let’s run it like a business–with competition. Currently, if your insurance company hassles you, refuses to pay for treatments your doctor prescribes, or provides substandard customer service, what recourse do you have? If you’re lucky your employer provides a couple options and you can switch–although only if it’s the correct time of year. If your employer only provides one option, you’re stuck with what you have because independent insurance is costly, or if you’re someone like me, pretty much unavailable. So there’s no incentive for the insurance company to treat you fairly or with respect. If you’re unhappy, too bad. Just like dinner in your mom’s kitchen when you were growing up: you got two options–take it or leave it. And leave it, if you’ve got a disability or a chronic condition, isn’t really an option.

As you read this, some of you may be thinking: Well, ok, I can be indignant for Barry, but it doesn’t really affect me. I’m healthy, I have insurance or could get some if I needed to. The truth is, though, the odds that you may one day acquire a condition that could be slapped with the label “pre-existing condition,” are pretty good. It’s like the Sphinx’s riddle: What walks on four feet in the morning, two at noon, and three in the evening? The answer: a man (or woman). If you’re lucky you’ll acquire that third leg (a cane) at a ripe old age when you are eligible for Medicare. (Hopefully, Medicare will still exist.)If not, you may find yourself functionally ineligible for insurance, or you may find that the insurance you have refuses to cover treatments for the condition because it pre-dates your acceptance into the plan.

So regardless of which side of the aisle you sit on, or which party you love to hate, consider carefully what voting wholesale against health care reform really means.  Honestly, I can’t say that I fully endorse (or understand) either the House or the Senate bills at this point. I do know that both make it illegal to deny coverage based on pre-existing conditions, and that both place a cap on the premiums that can be charged to folks with chronic conditions. And I do know that we can’t sit around and do nothing. Allowing the status quo to continue means that costs can continue to sky-rocket and that discrimination can continue unchecked. It means that people like me, or your father who survived cancer, or your sister who has multiple sclerosis, or your son who suffers from depression–and the people who care about and for them–will continue to live in fear; fear that life-saving or life-altering treatments will become unattainable or that they, or their families, will be subsumed by astronomical debt.

I’ve been lucky so far, but in the future I’d rather depend on a fair system and save my luck for playing the lottery.