When I was a medical student, I noticed blood in the toilet. I panicked. I called my father, who at the time was a practicing surgeon, and he told me it was likely hemorrhoids. Given the alternatives, I breathed a sigh of relief. Dad’s a minimalist, so he didn’t recommend that I see a doctor.
The blood didn’t go away, though. Soon, I started to have diarrhea, cramps, and the urge to go to the bathroom all the time. That summer in 1995, I worked at Children’s Hospital of Philadelphia on a research project, and I had to go to the bathroom so many times I thought they were going to fire me. It got so bad, my dad finally sent me to the gastroenterologist. They determined I had ulcerative colitis.
Here’s what this disease does to one’s body: My colon, left to its own devices, gets inflamed to the point of ulceration. To control the disorder, I take an immunosuppressant every day, enough to keep things in check. When flares occur, there’s pain, diarrhea, and a significant chance of my pooping my pants. It’s not only inconvenient; if left untreated, the long-term consequences of the disorder can be catastrophic.
But there is nothing about this disease that ties it to choices I’ve made. I was 22 when I was diagnosed. None of it was my fault.
So it’s hard for me to wrap my head around politicians who suggest that people with preexisting conditions deserve higher insurance rates because of their lifestyles. That is an uninformed at best, and cruel at worst, way of looking at the need for health insurance for everybody.
It’s not my “fault” that I’m sick
I try very hard to see the good in others. When I write, when I debate others, I do my best to assume that the intentions of those with whom I disagree are righteous. Even when we see the world differently, I make every effort not to think that others are “bad” or want to see people suffer. I’m not perfect, so sometimes I screw up. When I do, I apologize.
On Monday, Congress member Mo Brooks, an Alabama Republican, went on TV and made the following statement about his party’s Obamacare replacement plan, the AHCA:
My understanding is that it will allow insurance companies to require people who have higher health care costs to contribute more to the insurance pool. That helps offset all these costs, thereby reducing the cost to those people who lead good lives, they’re healthy, they’ve done the things to keep their bodies healthy. And right now those are the people—who’ve done things the right way—that are seeing their costs skyrocketing.
I cannot adequately describe how much this enraged me. This is one of those things that you hear people say “the other side believes” but discount. I don’t want to believe that people think this. I don’t want to believe that people think that some others deserve to be sick. I don’t want to believe that people equate being ill with a moral failing.
I didn’t do anything to get ulcerative colitis. I did nothing wrong. I eat a well-balanced diet. My weight is good. I exercise five times or so a week. I don’t smoke or do drugs. I don’t drink more than socially. I do everything I’m supposed to do.
I take drug that costs about $80 every three months and requires me to take complex tests regularly. I try to limit my stress and anxiety. I have a colonoscopy every few years. I’m doing the things I need to do to keep my body healthy. I lead a good life.
I still have ulcerative colitis, though, and I will until I die, likely.
My brother, amazingly enough, was diagnosed with Crohn’s disease, a different inflammatory bowel disorder, in high school; the Carroll GI protoplasm ain’t the best. When I was doing my medical residency, and he was a law student, we would talk often about how we would both have to work for very large companies or organizations in order to get health care. It was a fact of life. We both knew that on the individual market, no insurance company would touch us. Ever. Because of our preexisting conditions, we’d be screwed for the rest of our lives.
He didn’t do anything wrong either, by the way.
Twenty-seven percent of Americans have a preexisting condition
My brother and I are not alone.
According to the Kaiser Family Foundation, about 27 percent of adult Americans younger than 65 have a preexisting condition that would result in their being unable to obtain insurance if the Affordable Care Act regulations went away. That’s more than 50 million adults. Almost a third of adolescents have at least one moderate or severe chronic condition.
Granted, many of these people might have insurance through their jobs or parents and therefore won’t be affected immediately by changes in regulations. But these estimates might also be on the low side. Another poll by the Kaiser Family Foundation found that more than half of respondents reported that they or someone in their house had a preexisting condition.
It’s not always clear exactly what might define an “uninsurable” medical history. But we do know what conditions, medications, or occupations were used by companies in the past to deny policies. People couldn’t get insurance on the individual market before the ACA because it was in insurance companies’ best interest not to issue them policies. It made good business sense. That didn’t mean it was right.
There is certainly a case to be made that people have some responsibility for their health. But the lines aren’t clear at all. It’s easy to point at smokers and say they’re doing something harmful and are raising costs for all of us. That’s why we can charge smokers more under the ACA. After that … it gets dicey.
Do you start regulating what people eat? What they drink? If you eat dessert and I don’t, why should I have to pay for your health care? Should we charge people more if they drive cars, which is the number one killer of children? I like to ski. That has risks. So does rock climbing. Or playing contact sports. Should we make them stop, or charge them more? What about people who scuba dive?
Should we start charging more or less to people who have different organs, whether that be male and female reproductive organs or a spectrum of other differences in between?
Maybe the Congress member misspoke and my interpretation of his words is off. But maybe not. Maybe he does believe what he said, that people who did things the right way are the ones who are healthy. If that’s the case, then I have a few questions for him.
What did the baby born prematurely, the one with congenital heart disease, or the toddler with sickle cell disease, or the child with autism, or the little girl with leukemia, or the boy with asthma, or the adolescent with juvenile arthritis, or the young woman with lupus, or the young man with testicular cancer, or the new mother with breast cancer, or the new father with inflammatory bowel disease, or the woman with familial heart disease, or the man with early onset Parkinson’s disease, or the retiring woman with Alzheimer’s disease, or the elderly man with lymphoma — what did they do wrong?
Did they lead bad lives?
Take your time answering. I’ll wait.
Aaron E. Carroll is a health services researcher, professor of pediatrics, and associate dean for research mentoring at the Indiana University School of Medicine. He writes regularly about health, health research, and health policy at his blog The Incidental Economist and at the New York Times’s the Upshot, and has a popular YouTube show discussing the same called Healthcare Triage.