I started out yesterday morning with a fresh cup of cold brew and fingers itchy to write all about the healthcare system and my family's experiences with it. So I sat down and dug through my blog archives looking for some concrete examples I could use when bringing up the Medicaid application process and the struggle to afford COBRA payments. Instead, I was swept along in a post-traumatic trip down memory lane. So rather than write a sardonic and hopefully informative post about health care reform, I sat on the couch and sobbed and read old blog posts and felt a little like Clark Griswold when he gets trapped in the attic and watches old family movies. Only I wasn't sobbing in a nostalgic kind of way, I was sobbing in a "that was a terrible time and there are still families everywhere dealing with this sort of thing every single day" kind of way. Then I felt a little like I was going to hyperventilate and I had to decide whether or not I could take a half a Xanax and still safely drive to pick the kids up from school later. See? Still making medical decisions every day!
I opted against the Xanax, just to be safe, and practiced some slow and steady breathing and then the phone rang. It was the medical supply company. Time to make the order for Ike's high-cal formula. I answered all the questions, verified the address, reported his weight, and then felt that sensation again. The elephant sitting on my chest sensation. [YES, I MEAN THAT METAPHORICALLY AND POLITICALLY] Still 28 pounds. At four years old. Every month it seems to be the same. Twenty-eight pounds. Twenty-eight pounds. But he's happy and healthy and so I struggle to trust that he will gain weight at some point, and that he must have all of the teeny tiny genes that come from all of the teeny tiny people he's related to.
Then I co-opted the Obama campaign's slogan, "Forward, Not Back" as a way to remind myself that we have already been through the Very Bad Times and are on a new path now, and there is no sense getting all blubbery and hyperventilate-y about things that are no longer happening.
This got me started on a series of thoughts about the things that ARE happening, though. Things happening to people I know and love and laugh with and worry about. A post-transplant lung infection, a post-second transplant lung infection, cancer surgery, hurricane damage, job loss. I don't mean to sound so grim - there are lots of great things happening, too. Great things are happening to the friends and loved ones who are suffering - as weird as that sounds. Antibiotics are winning the fight against bacteria. Insurance companies can no longer refuse service to patients with cancer. Hurricane damage is not great, but everyone is alive and intact. Job loss sucks, but offers of "email me, I know someone who's hiring" pop up consistently.
And so I feel that there is a political tug to everything these days, even though we are all done and done and more done talking about politics.
It seems that in this election so many people are pitted against each other, but one of the big refrains is the "small business owner" against "people who want to mooch off of the government and not pay taxes, etc."
The funny thing is that a lot of the people I know who need Medicaid and who have depended on (or are still depending on) government services to help in times of crisis - these people ARE small business owners. So I don't think this whole owning a small business phenomenon is mutually exclusive with never needing any help from the government.
Some things are just bigger than ordinary mortals can bear on their own. A small business owner who needs Medicaid to help pay for his daughter's lung transplant is not a failure or a burden on society. A person who works for a corporation and makes a good salary and needs Medicaid to help pay medical expenses for a child who is 4 years old and only weighs twenty-eight pounds and needs a pulse ox every time he has a cold - this person is not a failure or a burden on society.
The failure and the burden on society is the health care system itself. Not the doctors and the nurses and the other health care workers. But the system. The fact that I opened a bill from the hospital once and it was for $142,000 for just ONE DAY in the NICU.
That is a failure.
It is a nightmare.
It is not something Joe Blow Small Business Owner can afford even if he gets all the tax breaks in the history of tax breaks.
It is not something Middle Class Jane Smith with two kids, two cars, a mortgage and a savings account can afford, either.
Is it Jane's fault she cannot afford these things? Is it Joe's? Is it any more their fault than it's the fault of a homeless woman who needs a mammogram, or a poverty-stricken child who needs dinner and a cast on his broken leg? What about a single mother who has her baby three months too early?
No. It's not their fault that bad things happened to them. It's not their fault if they can't afford to pay $1200 a month for insurance coverage that still has thousands of dollars in deductibles and copays. Some people argue that it is their fault. They don't have high enough paying jobs. They bought new cars. They live in a house in a nice neighborhood on a nice street.
But to those people I would like to say look at your own house. Look at your own car. Look at your own savings account. Now imagine that five hours from now something befalls you. And you are in the ICU, or, God forbid, your child is in the ICU. And it takes $142,000 a day to keep you or your child strong enough so that you or your child can heal and go home and go back to "normal." Maybe you're lucky and you have comprehensive health insurance, so you're out a few thousand dollars for your deductible instead of hundreds of thousands of dollars. But then, wait. You need a home health nurse to help get you back on your feet. You need medical equipment in your home. You need special, prescription-only foods and medications. Your insurance will pay for these things, but only for 30 days. Or 60. Or 90. Then you run up against caps in your coverage. Then what?
It's all on you, that's what.
Do you have enough in your savings account to pay $142,000 a day for a week? For a month? For three months? If you do, good for you. If you don't, what will you do? Will your assets preclude you from qualifying for Medicaid and thus require that you go bankrupt before you can get medical coverage?
This would have happened to my family had it not been for a Medicaid waiver program for chronically ill children.
That is a fucked up thing.
So when you go out and vote, know that your vote is not just for you and your own family, it is for other families, too. It is for the future of your family and the future of other families. So I beg you to think about that. Whether you think I'm full of shit or not, think about it. No choice is perfect. No answer solves every problem. The health care system needs a HUGE overhaul and I don't know how that will work. But I do know this election cycle has made very clear there is a continuum called "It's OK To Fuck Over The Unfortunates." One set of candidates is on one side of this continuum and one set of candidates is on the other side.
Let us work together to not fuck the unfortunates. They are fucked enough as it is.