Tuesday, January 6, 2009

The Right Kind of Change

Those of us with chronic illnesses don't get a fresh start at the New Year, or any other time. It's one long continuum. But that doesn't mean there aren't peaks and valleys, and I choose to believe that 2009 will bring us many reasons to be glad.

First, we have a new Congress and a new President. Okay, well, the Congress isn't starting out to be that new. I read in the NY Times today that Republicans are going to hassle President-Elect Obama's choice for Attorney General, Eric Holder, just so the Democrats know they aren't going to get a free ride. Indeed, it's sort of funny to watch the posturing over the stimulus package; with substantial tax cuts included, the Republicans will have a hard time opposing it. But Harry Reid feels a need to slow us down, to tell us that it will take six weeks to write it all. The incumbents on both sides of the aisle have a hard time with change.

Still, I remain hopeful. Barack Obama continues to impress and inspire me. He pulled off one of the most stunning campaign victories in the history of American politics, so I believe he can do as he says he will. Things are going to change.

And we sure do need change. Today I got a call from a woman who's about to lose her job and, thus, health insurance for both her and her husband. Both of them have pre-existing conditions, and they can't afford to pay two COBRA premiums, or a total of $1200 per month. However, the only other option that would cover their pre-existing conditions is the state high-risk pool, which -- you guessed it -- requires that they use up their COBRA! With no other alternative, America will now have two more people who are uninsured.

When people talk about health care reform, they talk about chronic disease management because chronic disease accounts for $0.75 of every health care dollar spent in the United States. Yes, we need chronic disease management. But press them on what they mean and they will say prevention! Diet and smoking cessation. That's what they think they know about chronic illness.

That ridiculous notion will not bring about the right kind of change.

You want to control the health care spending of the chronically ill? Then let us buy affordable health insurance that covers what we need, and once we find it, let us keep it, no matter what. Remember -- you can't even try to control our utilization of health care resources unless we are in the system. If you leave us to fend for ourselves, we will keep spending taxpayer dollars on emergency room visits, and the rest of you -- who don't get what it's like to live in a body that doesn't work right, that hurts 24/7, that defies reason -- can keep complaining about how much we're costing you.

No. Enough. I'm tired of being your whipping post. I didn't ask to be chronically ill. You want to blame it on obesity and smoking? Where's the science behind your assertion that my Crohn's disease could have been prevented? There is none. Prevention is largely a myth. Diet and smoking cessation won't cure multiple sclerosis or lupus or immune deficiencies.

So let's get real and talk about what the chronically ill really need: doctors who care, a community that understands that we did not choose this and that we would prevent it if we could, a society that helps bear our health care costs because IT IS THE RIGHT THING TO DO. We all pay into Social Security to share the costs of being elderly or disabled. Why is it such a radical concept to suggest that we spread the cost of treating the chronically ill over all of society so that the cost is bearable, so patients get the health care they need, so we don't have to lose our house or our livelihood because we were unfortunate enough to get sick?

Change is going to come. But will it be the right kind of change?

If you are reading this and you have a chronic illness, please go to www.change.gov and tell your story to the Obama administration. Please help them learn what it's like to live with a chronic illness. Maybe if we teach them, the change we get will be the right kind of change.

If you are reading this and you know someone who has a chronic illness, or you love someone who has a chronic illness, ask them what it's like and really listen. Listen to how it affects their self-image, self-esteem, their work, their social life, their finances -- everything. Listen. Maybe if you try, you can "get it," and if enough people "get it," maybe the change that's going to come will be the right kind of change for the chronically ill.

I'm not asking for a handout. I work my ass off. I pay my extraordinarily high insurance premium. I reduce my medication when I can. I see as few doctors as I can as seldom as I can; believe me, I want no more interaction with the medical establishment than I have to have. The health care dollars I spend are the health care dollars I have to spend in order to remain productive, working, contributing to society.

So let's stop talking about managing the chronically ill and focus on managing our illnesses. Let's stop talking about how much we cost and focus on how much cost we are forced to bear. Let's stop blaming sick people for spending money and focus on how we can help sick people be less sick by spending the money they need -- no more, no less.

When we talk about change, let's talk about the right kind of change. Jennifer


  1. I love this post. I live in a country where healthcare is "free" and yet taking care of my health needs costs me a not-insignificant amount each year (don't get me wrong, I am aware that I am ridiculously fortunate to live somewhere that will look after me at all). However, for every thirty, forty, hundred dollars I hand over I can't help but think "I didn't ask for this, and there is nothing I can do to get rid of it". This problem is so much worse for those of you whoa re precluded from the system by the very disease that causes you to need healthcare, and I hope your post opens a few minds.

  2. I like this post. It agrees in some big ways with a post I recently submitted to a Livejournal group about IBD, although I have taken a darker (and, to my thinking, more pragmatic) tone about it all than you have.

    We can talk all we want about how "its the right thing to do", and perhaps you and I get that, but there are far more people out there who don't or won't get it. Customers of mine who haven't a clue as to my living with Crohn's make comments about how chornically sick people should be given palliative care and allowed to die so that healthier and "therefore more deserving" people can access the limited resources. Doctors and politicians talk about rationing health care so that it goes where it "makes the most sense" -- and they mean from a cost-effectiveness standpoint. Seriously, we live among latent eugenicists around here, and I honestly don't see that changing in a capitalist society, even one as financially on the ropes as this one.

    I intend to repeat the cycle: put of care, get really sick, go to the ER, run up a bill I cannot afford to pay, file bankruptcy, hang steady until the seven-year window of badness has passed. I've done it once already and am on the verge of doing it again. Meanwhile, I steal, scavenge and do whatever else it takes to survive. I see no other options and have NO ethical quandries about it at all.

  3. What you leave out of this post is this fact: you're sicker than you would otherwise be because you avoided seeing doctors and getting a second opinion on your gastroparesis. So now you need expensive food and medication to function. The same thing happened to me when I first got sick--I put off the colonoscopy for three months. The result was that I was a heck of a lot sicker, and not in a salvageable position (for my colon at least) by the time there was a firm diagnosis.

    Then we have the bogus things called step therapy, where every patient is exposed to crappy drugs that work once in a while before they are given the stuff that costs $4,000 a month, even though it's been scientifically proven that the stuff which costs $4,000 per month is less effective when it is not used right away.

    I do believe that the COBRA system is going to be eliminated. Congresspeople cannot justify a program that basically eats up an entire unemployment check. It kind of defeats the purpose of the program.

    At a minimum, this Congress should make sure that the chronically ill can buy into the health plan they give themselves.

  4. Actually, Bag of Health and Politics, that's not right. I did not delay in seeing doctors for my gastroparesis. I told my doctor I had it as soon as I figured it out. Rather than put me through a lot of testing, he just put me on the medication for it, which has kept it pretty stable. It was only after another surgery and a bad spell that resulted in serious weight loss that the doctors all decided they needed to get more serious about it. In the end, I'm not doing anything different except that I no longer eat anything that has to be chewed. But the medication I'm on is the same, and my food isn't any more expensive -- it's just different.

    Just for the record. Jennifer