How being sick changed my health care views

Often around the turn of the year I perform an act of pundit accountability, looking back on the previous year's columns to assess the things that I got wrong. For this January's edition, though, I'm going to take a different kind of backward glance, and try to answer one of the frequent questions I received when I wrote, last fall, about my experience with chronic illness: Namely, has being sick altered any of my views on health care policy?

It's a good question; the answer, like health policy itself, is complicated.

For an example of my pre-illness views, consider a column I wrote in 2013, in the midst of the endless Obamacare debates. Titled "What Health Insurance Doesn't Do," it looked at evidence from an Oregon study tracing the effects of a Medicaid expansion that happened via lottery, creating a genuine randomization in the population that had the chance to enroll.

The results, after a couple of years, showed that access to Medicaid helped people avoid "catastrophic expenditures" and reduced their depression rates. The program did not, however, seem to have much impact on recipients' physical health. This was a counterintuitive finding but not necessarily a surprising one: From a famous RAND experiment in the 1970s and early 1980s down to a recent National Bureau of Economic Research paper looking at the effects of insurance in India, it's common to get results suggesting that the relationship between health insurance spending and physical health is relatively weak.

With these findings in mind, my 2013 self warned against health insurance profligacy, on the grounds that if we try to provision everyone with comprehensive coverage, we'll probably end up encouraging overspending on unnecessary care. Instead, the ideal insurance system would cover genuinely catastrophic expenses, helping people avoid bankruptcy and the worst kind of mental stress — but avoiding the overtreatment and cost inflation that you get when you earmark too many public dollars for health and health alone.

I was healthy then; two years later I began my strange descent. And one part of the experience took those pre-illness views — I'd call them center-right with a libertarian flavor — and pushed them to the left.

This was the part of the experience where I was sick and had absolutely no idea what was wrong with me — which meant that I went from doctor to doctor, specialist to specialist, submitting to tests that succeeded only in ruling out various plausible diagnoses, without actually pinning down the source of all my blazing pain.

In these months I was given an object lesson in the ambiguities contained in terms like "overtreatment" and "unnecessary care." Because considering my ultimate diagnosis, all of these visits were a form of overtreatment. What I really had, though I didn't know it, was a tick-borne illness. Yet here I was undergoing tilt-table tests and going in for a CT scan and an endoscopy, running up a huge tab on my New York Times Co. insurance policy for tests and procedures that did nothing direct or immediate for my health.

Yet from my perspective as a patient it was all reasonable and necessary, because my illness was severe and needed treatment, and there was no way at the time to know which specialist would be the one who helped, which test or scan would be the one that revealed what was really going on. Nor was I in any position to act as a discerning consumer or a good capitalist, to do price comparisons between different neurologists or cardiologists while my legs burned and my chest blazed. Instead, as a patient I was simply too vulnerable and desperate to do anything save throw myself on the medical system's mercy.

So my desperate self gained a new appreciation for the things that make health care unique among the burdens that the welfare state is intended to alleviate, and the limits of a libertarian vision of the patient as a cost-sensitive consumer. And I also gained a greater appreciation for the thing that, in the Oregon study, Medicaid spending clearly did seem to achieve — the importance of insurance coverage for stable mental health, greater peace of mind, in situations where you're worried that not only your body might be ravaged but also your finances as well.

But then comes the complicating factor, the part of my experience that turned me more right-wing. Because in the second phase of my illness, once I knew roughly what was wrong with me and the problem was how to treat it, I very quickly entered a world where the official medical consensus had little to offer me. It was only outside that consensus, among Lyme disease doctors whose approach to treatment lacked any CDC or FDA imprimatur, that I found real help and real hope.

And this experience made me more libertarian in various ways, more skeptical not just of our own medical bureaucracy, but of any centralized approach to health care policy and medical treatment.

This was true even though the help I found was often expensive and it generally wasn't covered by insurance; like many patients with chronic Lyme, I had to pay in cash. But if I couldn't trust the CDC to recognize the effectiveness of these treatments, why would I trust a more socialized system to cover them? After all, in socialized systems cost control often depends on some centralized authority — like Britain's National Institute for Health and Care Excellence or the controversial, stillborn Independent Payment Advisory Board envisioned by Obamacare — setting rules or guidelines for the system as a whole. And if you're seeking a treatment that official expertise does not endorse, I wouldn't expect such an authority to be particularly flexible and open-minded about paying for it.

Quite the reverse, in fact, given the trade-off that often shows up in health policy, where more free-market systems yield more inequalities but also more experiments, while more socialist systems tend to achieve their egalitarian advantages at some cost to innovation. Thus many European countries have cheaper prescription drugs than we do, but at a meaningful cost to drug development. Americans spend obscene, unnecessary-seeming amounts of money on our system; America also produces an outsize share of medical innovations.

And if being mysteriously sick made me more appreciative of the value of an equalizing floor of health-insurance coverage, it also made me aware of the incredible value of those breakthroughs and discoveries, the importance of having incentives that lead researchers down unexpected paths, even the value of the unusual personality types that become doctors in the first place. (Are American doctors overpaid relative to their developed-world peers? Maybe. Am I glad that American medicine is remunerative enough to attract weird Type A egomaniacs who like to buck consensus? Definitely.)

Whatever everyday health insurance coverage is worth to the sick person, a cure for a heretofore-incurable disease is worth more. The cancer patient has more to gain from a single drug that sends their disease into remission than a single-payer plan that covers a hundred drugs that don't. Or to take an example from the realm of chronic illness, just last week researchers reported strong evidence that multiple sclerosis, a disease once commonly dismissed as a species of "hysteria," is caused by the Epstein-Barr virus. If that discovery someday yields an actual cure for MS, it will be worth more to people suffering from the disease than any insurance coverage a government might currently offer them.

So if the weakness of the libertarian perspective on health insurance is its tendency minimize the strange distinctiveness of illness, to treat patients too much like consumers and medical coverage too much like any other benefit, the weakness of the liberal focus on equalizing cost and coverage is the implicit sense that medical care is a fixed pie in need of careful divvying, rather than a zone where vast benefits await outside the realm of what's already available.

Alas, I don't have some perfect policy regime that synthesizes these insights — the value of solid coverage that doesn't require too much of individual patients, the value of decentralization and innovation and experiments. It's precisely the challenge of synthesizing them that makes health policy so difficult.

But if I was an Obamacare skeptic before I got sick, today I'm relatively comfortable with the uneasy, unfinished place where the 2010 health care reform has ended up.

A decade ago, if you'd told me that the law's clearest legacy was its Medicaid expansion, and that the attempts to build a thriving individual-insurance market and rein in unnecessary spending had met with less success, I might have looked at its architects' grand ambitions and called that outcome a failure.

Today, though, I have more appreciation for the reassuring simplicity of the basic Medicaid guarantee, and more skepticism about the patient-as-consumer hopes that undergird Obamacare's exchanges. And as for all the American-style bloat and unnecessary spending that the Obama technocrats hoped to purge from the system and mostly didn't — well, I have a little more appreciation for that as well.

Don't get me wrong: If I had a simple way to take a scalpel to hospital monopolies and their profits I'd still do it. If you presented me with a blueprint to expand means-testing in Medicare and use the savings to fund new research programs, I'd embrace it. If you offered me a plan to reduce prescription-drug costs by reducing regulatory burdens on new treatments, I'd celebrate it.

But once you've become part of the American pattern of trying anything, absolutely anything in order to feel better — and found that spirit essential to your own recovery — the idea of medical cost control as a primary policy goal inevitably loses some of its allure, and the American way of medical spending looks a little more defensible. To just try things without counting the cost can absolutely run to excess. But sometimes what seems like waste on the technocrat's ledger is the lifeline that a desperate patient needs.

Ross Douthat has been an opinion columnist for the New York Times since 2009. He is the author of several books, most recently "The Deep Places: A Memoir of Illness and Discovery." On Twitter: @DouthatNYT.