life with a chronic illness

I’m working on a story about the high cost of prescription medications and how those of us who aren’t currently covered by health care insurance manage to pay those costs out of pocket. If you fall into this category, I’d love to hear your story.

Please contact me at angela@nadgb.com. You of course have the option of speaking anonymously.

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Okay, maybe it’s partly due to the heat, maybe it’s partly lack of sleep, but I have to say – this is absolutely ridiculous, and I have had enough. I’ll be spending the next day or two without medication, and I know some people will be wondering why so just to get it out on the table up front, I’ll tell you why even though that shouldn’t matter at all in the context of this post. I am short because of a combination of things that include – holiday weekend, losing my only two sources of income, my delay in applying for Medicaid (I am only recently eligible), my deep desire to continue to live independently and therefore my refusal to pack up and move in with my mother (no offense intended Mom), the Senate going off on vacation without passing the emergency extension of unemployment benefits, my misfortune in getting Parkinson’s disease, a large number of my fellow Americans who don’t think that everyone in this country is entitled to access to affordable health care, the fact that I live in the only country in the world which ties health care insurance to employment, my procrastination in applying for public assistance, an out of control greedy insurance industry, ditto the pharmaceutical industry, and a really sucky economy.

In my previous blog post I mentioned my friend’s recommendation that whenever we experience something deeply distressing we pray, not for ourselves but for others experiencing the same thing we are. So instead of just hunkering down while bemoaning my fate, I started thinking and then praying for other people who are unable to pay for their medications. And the prayer thing, well I assumed that this particular prayer session would be sad but I really didn’t imagine how angry I’d get. Forget my situation, because I’ll figure things out. But think about people who don’t have the resources I do. I mentioned in the paragraph above that we are the only country in the world that ties health insurance coverage to employment.

I want everyone who reads this to really think about what that means.

I repeat, I want you to really, really think about what that means, not just in practical terms, but also what it says about who we are as a people. It seems pretty clear to me what it means – what it says is this – when you are no longer employed, you are no longer “useful” and therefore what happens to you next is your problem. When you’re employed, when you are a cog in the wheel, when you are making your contribution to the corporate machine, we have laws and regulations to protect you as much as possible – we will require your employer to pay you a minimum wage, we will require your employer to have certain safety regulations in place for your physical protection, we will limit the number of hours your employer can make you work, and enforce break periods and overtime, we will pass laws to ensure that your employer will have a hiring process that is as fair as possible, we will require them to also cover expenses should you become involved in an accident while on the job. We do all these things because we’re beneficent that way. [Shh, no questions.] But, once you are no longer employed or employable, well, then thanks very much for your service to our economy, have a nice whatever (oh, we’re working on eliminating SSI just so you know) and bye-bye.

Once you are no longer employed, you cease to be useful. When you cease to be useful, we honestly don’t care what happens to you. Okay we care just enough to prevent too much guilt on our parts.

Starting to see now why I’m angry? How dare we treat people like garbage just because they are no longer “useful” to our economy. How dare we let the elderly, including people who have worked hard their entire lives, the disabled, the poor, the ANYONE of us have to worry every month about whether they’ll be able to buy medications. Wonder how they will pay for their child’s health care. Know that they are one simple little accident away from bankruptcy because they can’t afford health insurance.

In addition to being cruel, this is simply insane, and it makes no sense economically. No one benefits from millions of Americans who are uninsured. Oh, well, some people benefit.

I want to do two things, first, I want to make sure this is clear for all of the people out there who think people like me, you know people who are sick, just didn’t manage things well. And second, I want to explain why our current system makes no sense. So, we’ll use me as an example. I am no longer able to maintain a traditional job, but I can certainly still work (and believe me I do) I just need to find work that I can do from home. And, if I didn’t have to pay these exorbitant medical costs out of pocket, I could manage financially, it would still be a struggle, you know until fame and fortune discover me, but I could manage. Here’s why I can’t manage:

I don’t currently have health care insurance. Because I have a preexisting condition, and because I had a lapse in coverage (which means that the month I stopped being able to afford COBRA, which was $660 per month, I wasn’t prepared with another plan at the ready that I could afford) insurance companies can refuse my application. And even if they don’t, treatment for my preexisting condition, doctor visits and medications, won’t be covered for a period of one year. My medications currently cost me $550 per month. I can hardly afford those let alone a monthly premium on top of that. So, now – I’m applying for welfare, because it makes more sense for me to get welfare than it does for me to continue to work. Wow.

I don’t want to turn this into a dissection of all that is wrong in this country, we’re all fairly sick of that, and my horror stories are old news. I would rather point out that when we are discussing, debating, arguing any of these topics – whether it’s health insurance, public assistance, whatever, please, I ask you to remember that there are real people behind these discussions. They are real people many of whom are alone and afraid and they need more from us than our disdain. How to help? Maybe just start with a prayer.

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