Too wealthy but not wealthy enough

This week I felt very defeated by medical expenses and government bureaucracy.

Between my social security disability and the long-term disability from my last employer, I make too much money to qualify for Medicaid. I was able to get Medicare as of January due to being disabled for 2 years, however the Medicare copays are pretty outrageous. I crunched the numbers recently and realized that between premiums and copays I’ve been spending about $900 a month on medical expenses. And the costs would be even higher if I didn’t have a grant from the Healthwell Foundation that helps cover some of my more expensive specialty medications, as well as certain vitamins and nutritional supplements. I had hoped, however, that I would qualify for a Medicaid spend-down, in which Medicaid would kick in once I spent enough on monthly medical expenses to bring my income under the income limits.

I went down to Medicaid on Tuesday, and found out that not only are the Medicaid income limits even lower than I expected, but the income limits for the Medically Needy Program that I would fall under are OUTRAGEOUSLY low. An individual on the Medically Needy Program can only make $367 a month, and then the program won’t even cover hospitalization costs! With my income, I’d only qualify for that program if I paid $9,400 in medical expenses within 6 months, at which point Medicaid would kick in and cover most other non-hospital expenses. My bills are high, but thankfully not THAT high – and even if they were, how exactly do they expect me to afford $9,400 a year?? Why on earth would they have LOWER income limits for the medically needy, when we have HIGHER expenses?? And how do they expect us to pay our hospital bills?!

Basically, I’m not poor enough to qualify for help, but I’m also not rich enough to afford my medical expenses. What a fantastic system. I kinda feel like I’m being punished – either for actually trying my best and working for so many years, which raised my disability payments, or for being born with an expensive, life-threatening illness that I have no control over and now prevents me from working. Either way, the government has deemed me unworthy of getting help paying for the medications and treatments that keep me alive. Which is upsetting, frightening, frustrating, and infuriating. And, honestly, pretty damn unfair.

I am very, VERY fortunate that I have a strong social network that is both willing and able to support me. I know that my family, friends, and community won’t let me fall, and I have already received enough support to get me through the next several months if not the rest of the year. But the whole situation is still stressful and unfair. Just managing my health is already an exhausting full-time job; trying to figure out the finances on top of it just adds insult to injury. And then there’s the constant pressure that comes with knowing that you’re living on someone else’s money. Is this the right thing to spend my money on? Do I really NEED new shoes, or a haircut, or meat, or donuts? Should I spend money on the occasional dinner out, or movie, or other leisure activity, or is that a waste of someone else’s charity? Am I allowed to have fun, or is that an unnecessary expense?

And there are so, so many people out there who are not fortunate enough to have my strong support network. What in the world do they do? The sad truth is, a lot of them probably skip medications and treatments, and get sick, and die sooner than they have to, simply because they can’t afford to stay alive. Which is absolutely pathetic in our modern society.

I know that I’ll be ok. But it will be stressful, and I really, really don’t appreciate having extra stress in my life. And I also know that there are many people out there who will NOT be ok, and it enrages me that this is the reality of our healthcare system. The whole situation is simply infuriating.