Diagnosis: Celiac (Part 1 – The Problem)

With a current nationwide debate raging about much-needed health care reform in the United States, I thought it was timely to address the thorny topic of Celiac Disease and health insurance. For many, it’s a sore subject, and understandably so. In fact, I was first inspired to tackle this slippery slope after reading the Facebook status update of a friend of a friend. She lived in Texas and had recently changed jobs. Applying for health insurance under her new employer, the woman was denied coverage because her Celiac Disease was considered a pre-existing condition that excluded her from eligibility. Could that happen to me? I wondered. You’ve probably wondered it, too, or maybe it has already happened to you.

If you do a basic Internet search for “Celiac Disease health insurance” you’ll turn up hundreds of anecdotal stories from people who’ve all experienced the same outcome: denial of health insurance coverage. It makes it seem like a huge and prevalent problem, and it is. I think that many Americans are revolted by the idea of being denied health insurance, or dropped from coverage, on the basis of a pre-existing condition or new diagnosis (with Celiac or something else). Especially those people who have been on the unfortunate receiving end of such a scenario.

Much harder to find – but definitely out there – are the success stories of people with Celiac Disease who have obtained and retained health insurance. Given that plenty of these types of examples exist, how do we make sure we’re in the latter population, and not the former?

Before we can answer that question, however, it’s important to fundamentally understand the problem…simply, that millions of Americans are without health insurance, and can’t afford the grossly inflated cost of health care in the United States. That’s it, plain and simple.

The moral/ethical position of the General Public, I think, is also easy to state: I believe we have evolved as a society to a point where we generally agree that all people should have a fundamental right to basic, essential health care. That much is not in debate. It would be a rare and cold-hearted individual who would look at a fellow human being and say, “Deny them care. Let them die.” Even so, I feel as though it’s important to state this plainly. Over the years (and decades, and centuries, and millenia) those in power have had a need to state and assert the rights of those who are not in power; rights that seem self-evident, obvious, and not needing to be so plainly stated. The Declaration of Independence, U.S. Constitution and Bill of Rights (and subsequent amendments) did it (life, liberty, pursuit of happiness). The leaders of the women’s suffrage and civil rights movements did it for women and minorities, respectively. The United Nations had to do it for access to clean drinking water. More recently, I think we could add “access to education” and “patient’s bill of rights” to the list.

And so I say it again – people have a right to basic, essential health care. The devil’s in the details, though, and that – I believe – is where the nation’s debate resides. Namely, how much should health care cost? Who should pay for it? And how?

Of course, all three of those questions hit at the heart of the problem…that the health care system in the United States today is one centered not necessarily on health, but rather one centered on money. We have commoditized human health, and so instead of making health care a moral and ethical mandate, we’ve made it an economic argument, weighed in pros and cons, and costs and benefits. We look not at the value of a life, but at the cost to maintain that life. I hesitate to use these words, because they are so polarizing, but it partly comes down to the difference between a purely capitalist approach to health care, and a more socialist perspective.

In the U.S. today, it all comes down to risk pools. Any health insurance system is based on maintaining a workable risk pool, a balance of healthy and unhealthy individuals all enrolled in the same plan. We’ll all be one of the “unhealthy” people at some point in our lives, but the idea is for the majority – the healthy folks, with their decreased medical expenses – to balance out the minority – the unhealthy folks, with their increased medical expenses. Again, we’re back to the financial balance sheet.

People with pre-existing conditions get denied or dropped from coverage, then, because they’re seen as being permanent residents of the “unhealthy” category of people, and insurance companies would then expect to have heightened ongoing costs associated with funding medical care for these persons. Viewed from a purely callous economic standpoint, this is a reasonable position. It’d be like insuring the Mona Lisa painting for $100 million, knowing it’s going to get stolen next week. No underwriter would back that policy, and that’s how insurance companies view pre-existing conditions.

There are just two big problems with that. Firstly, it violates my hypothesized generally agreed upon but not explicitly stated right of universal access to health care. Secondly, and very specifically to the case of those of us with Celiac Disease, it’s an inaccurate perspective.

If you’ve lived with Celiac Disease, been diagnosed, and then been gluten-free for a period of time, you undoubtedly know that you’re far healthier post-diagnosis than you were pre-diagnosis. If we think about it in terms of economics, undiagnosed Celiacs are a much greater financial burden on the system than Celiacs who are gluten-free. And there’s the irony – our pre-existing condition actually makes us healthier than Celiacs who are undiagnosed (and hence who, in the eyes of insurance companies, have no pre-existing condition). We’ll require less medical care over our lifetime, not more. What health insurance company wouldn’t want to back that scenario?

Instead, we have the current dilemma. When we are sick, we turn to the health care system for help and answers, and to hopefully get better. But once we find those answers – in the form of a Celiac diagnosis and the instruction to follow a GF diet – we might suddenly find ourselves expelled from that health care system. For many people, being thrust into the GF lifestyle can be an initially isolating experience. Must we be isolated in our health care, too?

In response, some people with probable Celiac Disease shy away from pursuing a definitive diagnosis. For one, this skews the statistics, making the disease seem less prevalent than it actually is, and potentially impacting the amount of research funding that flows into the cause. But for another, it enables people to avoid a formal diagnosis so that they don’t create a medical paper trail that leads back to Celiac (for fear of being denied or dropped from coverage). Either that, or it encourages some diagnosed Celiacs to lie and not claim or disclose Celiac Disease as a pre-existing condition when applying for or renewing health insurance. And that amounts to insurance fraud.

So what to do about it? Coming tomorrow…Part 2 – The Slippery Slope of Solutions.

– Pete