Wednesday, March 28, 2012

What Kind Of World Do You Want?

That's what health reform comes down to: What kind of world do we want to live in? Is it somehow evil to require healthy people to buy insurance so as to spread the risk, the cost of people with pre-existing conditions? Forget the arguments on the merits -- we spend $43 billion per year on uncompensated care for the cost of people who go without insurance and then pile up medical bills that they can't afford to pay; everybody will need health care some day and the "when" of that is unpredictable, so you can't wait until you're sick to buy insurance; etc., etc. Let's just talk about what's right and wrong.

I have Crohn's disease. I did nothing to deserve it. I got sick as a kid. Up until then, I did all the things you're supposed to do -- regular doctor visits, eat reasonably well, take vitamins. Nothing other than the fact that a first cousin of mine also has Crohn's disease explains the reasons why I was this unlucky. Since I was diagnosed, I've done everything the doctors have said. Eight surgeries. Every medication known to humankind. Very careful about what I eat. I've never gone on disability, even when I was sick enough. I spend my life taking care of other sick people. If getting sick is not entirely random, there's no explanation for why I have had to suffer. No -- this is not my fault.

Getting sick is, for the most part, nobody's fault. Nobody wants to suffer like this. And really, you can't imagine the suffering. The fatigue. The pain in every inch of my body 24/7. Not to mention the fecal incontinence that comes with Crohn's flares -- truly, hell on earth.

Why, then, do millions of Americans think it's okay for me to be treated like a second class citizen when it comes to health insurance? Thankfully, there is one group plan in Connecticut in which you can have a group of one. Were it not for that -- were I in most any other state -- I would not be able to buy insurance -- period. At best, I would have to go six months without insurance to get into a high risk pool. Six months without insurance wipes out my entire savings. There are millions of people like me. Why is that okay?

We don't allow discrimination in employment, schools, public accommodations. Why do we allow insurers to discriminate against people who did nothing wrong other than to get sick? I talk to people every single day who did nothing wrong -- nothing -- but they can't afford to go to the doctor, and if they can, they can't afford the medication the doctor prescribes. People who can afford to pay an insurance premium can't find an insurer willing to take them because of their pre-existing condition. Why is that okay?

It's not okay. Period. I know -- if we're allowed into the individual insurance market, premiums will go up for everybody. If there's a requirement that everybody has to buy insurance so that we can spread the cost of including people with pre-existing conditions, then healthy people are subsidizing our health care. And they don't like that. No matter that they could get sick tomorrow. No matter that they could have a sick child. People resent having to help out those who are less fortunate.

And I resent the hell out of that. I pay my taxes. I help fund wars I don't believe in. I help pay for Social Security for today's seniors. I help pay for Medicare even though I'm ten years away from getting it. Money comes out of my paycheck every week that I don't choose to spend the way it's being spent. We shift costs all the time in this society. Why not for people with pre-existing conditions?

Of course, there are those who believe that Medicaid, Medicare, Social Security are all "ponzi schemes" or unjust ways of shifting wealth. But we support those programs even if they don't help us directly because we know that, without those programs, people will suffer terribly. What makes health insurance for people with pre-existing conditions so different?

The world I want to live in is a world in which we care for each other, where we don't balk at paying a little more if we're able so that those less able can manage. The world I want to live in is one in which we do not discriminate, we do not treat people as less than, simply because they were unlucky enough to draw the short straw and get a chronic illness.

I'm tired of the lies and vitriol around health reform. There are nearly 50 million people in the United States who don't have insurance. Most of them want insurance but can't get it because of pre-existing conditions, or can't afford it because of cost. The health reform law fixes both of those problems, so everybody who wants insurance can get it. The great benefit of that outweighs the interests of those who do not want to do their share to help make this a healthier society.

But that is short-sighted. If people who are sick are insured, they can access health care to prevent a flare or spread of their diseases, and we can treat people while their illness is under control -- when it costs a lot less than surgeries and hospitalizations and nursing homes. Instead of spending $43 billion on health care for the uninsured, we will enable people to buy insurance on their own -- at a cost of far less than $43 billion. In the end, doing the right thing for sick people in the short-term saves us money in the long term.

The kind of world I want is one in which compassion is our central value. And if I can't have that, I'd like a rational world, where people choose the less expensive, long-term solution. Either way, I want to be treated as equal when I go to buy insurance. I have to live with this stinking disease; I shouldn't also have to live with discrimination. The health reform law does away with this discrimination.

And that's the kind of world I want. Jennifer


  1. Sigh, I'm a person in Virginia with Type 1 Diabetes, I'm 26 years old (so no parental coverage) and I pay about $900 for coverage (which I'm eligable ONLY because I had credible coverage through my parents). It's hard because I want a full time job with benefits, but the moment a private employer even sees a shot or a blood test, that means I would cost more money and suddenly I'm removed from the position (this has happened twice). I know this kind of workplace discrimination is illegal, but it would be another thing to try and prove it. Anyway, I have had mixed emotions throughout these oral arguments, and when I read what the Obama administration was doing, I was furious. I feel betrayed by a President who has been demonized constantly and I stood by, only to learn that today he abandoned folks with pre-existing conditions. Lets hypothesize that the law were to stand as the administration sees fit, when would the next time be we would ever have the political will to address Health Care for "sick people"? Well, anyway, the pundits will make it sound as it's my fault for not working a job that provides health care, even though I work the equivalent hours part time because that's all I can get, due to the fact that insuring me would cost more money. Also, I would rather my co-workers new I was diabetic in the event that maybe my blood sugar was dropping they might ask if I'm ok and I can do something to deal with it, rather than trying to hide it and ending up passing out or in the hospital. I'm trying to better myself by getting a Master's degree (because a BS apparently isn't enough to get a job either these days.) Sorry if this seemed like a rant, but I don't have anywhere else that I can really vent. I hope for a better day, honestly, I don't have faith in our government doing right anymore (and perhaps the naysayers of government solutions were right all along...)


    1. Hang in, Andrew. I don't know if it helps, but you should know that everybody with chronic illnesses has these kinds of issues. If you'd ever like to talk and explore whether there's something we can suggest to help, you can reach me at Jennifer

  2. Has this organization tried any sort of Lobbying?

  3. We don't lobby -- we're a tax exempt nonprofit, so we can't. But we do public education and we do weigh in on issues when we can. J