Last year, the Journal of Occupational and Environmental Medicine reported that medical costs for us Crohnies are much more costly to employers. The costs are so high that no employer who knows how expensive we are could possibly justify adding us to the payroll unless we were uniquely qualified specialists. You can read more about the report in this past blog entry. And, of course, Crohn's being a costly, lifelong disease, it is definitely on the "pre-existing condition" list that makes insurance cost-prohibitive (if you can find a policy that will accept you at all).
Last year, I was hospitalized twice with a bowel obstruction. In case you've not experienced this brand of joy, allow me to say that it is every bit as unpleasant as you might imagine. The first time I was admitted, the gastrointestinal specialist assigned to me immediately wanted to have my Crohn's-afflicted intestines surgically removed--along with my appendix for reasons unclear to me. He also berated me for not taking a biologic drug treatment, despite the fact that that class of drugs is extremely expensive and well out of the affordable price range for a low-income guy with no insurance. Doctors don't live in a world with the economics the rest of us live with, you know.
Now, I know a lot of patients defer entirely to their physician. After all, this person went to school, has treated countless other patients, has a white coat and everything; surely this person knows best, right? Well, the funny thing is that not all physicians agree on how to treat the same patient. Putting all your eggs in one doctoral basket, then, seems foolish when it comes to something as important as your health.
To wit: I discussed my apprehensions about surgery with the surgeon referred to me by the GI. He agreed with me that I was right to fear surgery because even though it would remove the affected area, the Crohn's would simply return to the same spot later. Surgery is only a temporary fix for Crohnies, and each time you have less intestine remaining and the clock starts ticking for the next surgery immediately. Statistics say you can theoretically have years of remission between surgeries, but what they're slow to tell you about are all the patients that have multiple surgeries within a single year of their first. There's no way of knowing how things will go for a given patient.
Think of it this way: You might not hesitate to place a bet at the roulette wheel if the croupier explained that, if you win, you get a lot more money. Imagine your surprise, though, if the croupier failed to explain that if you lose, he takes away your money. You want to know what could happen either way, and doctors don't always acknowledge all the probable, much less possible, outcomes of a particular treatment.
So, even though the GI told me I could win a lot of money, the surgeon confessed that I could lose my money if the wrong number came up. He also agreed with me that the best course of treatment would be to allow a high dose of steroids the chance to reduce the inflammation. After a week, I was discharged without surgery. The bill was enormous, I don't mind telling you, but nowhere near as outrageous as it would have been had I agreed to the surgery the GI insisted I needed. My working understanding of my condition, coupled with the self-confidence to disagree with a specialist, not only kept me from an unnecessary surgery, but it reduced the cost of my hospitalization.
We're debating health care reform by scaring Americans into thinking that the government is going to dictate who lives and who dies, and assigning us to doctors of their choosing. I personally think the "choice" debate is overblown anyway. Have you ever been admitted to an emergency room? You get whatever doctor gets to you. Ever been admitted to the hospital? You get whatever doctor is assigned to you, unless you happen to have an arrangement with one. I am one of many Crohn's patients in my area whose primary GI care is at the Ambulatory Internal Medicine clinic at the University of Louisville Hospital. It's a teaching hospital, and that means that I'm lucky to see the same doctor twice because they rotate every several months throughout the various departments. Sure, I theoretically have the "choice" of seeing a private practitioner. But without insurance, who can afford one?
I realize that you are very likely reading this and dismissing my experiences as just that: my experiences. "Sucks to be you," you're thinking, "but you're not the norm and besides which, why should I pay into a system to take care of you?" Well, yes, it does suck to be me. The scary part is, it sucks a whole hell of a lot worse to be plenty of other people. Why should you take care of me? Well, I can't answer that specifically but I can say that chances are pretty good you know someone else like me. Probably someone far worse off than me. You might even be that someone else, in which case allow me to say: Sucks to be you.
What we can learn from my experiences, though, is not just that you should take care of me. We can also learn a more important lesson, which is that we need to take more responsibility for taking care of ourselves. Had I abdicated all charge for my own care to the GI, I would have had an unnecessary surgery and racked up an obscene hospital bill. Not only did I do myself a favor by knowing enough about my condition and its treatments, but I saved a ton of money. I understand that patients self-diagnosing themselves on WebMD creates a whole other slew of issues, but I believe that we are better off with doctors having to take a few more minutes to answer questions than running roughshod over ignorant patients. It's your health; take some time during American Idol each week and do some basic research online. There are countless online resources for any medical condition.
The real subject of the health care debate shouldn't be who's paying for whose care; it should be whether our costs are sensible in the first place. Doctors are so insulated from the kinds of money restraints the rest of us face that all too often they order tests, surgeries and prescriptions with little regard to whether there is a more cost-efficient alternative. And that, to my way of thinking, should be the real focus of health care reform.
You can read about my second hospitalization of 2008 in this previous blog entry for more examples of how straying from what was called for ran a large tab.