How my illness changed my views on health care

Often around the turn of the year I perform an act of pundit accountability, looking back on the things I got wrong. This January, 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 in a column last fall, and in a memoir, about my chronic illness: Has being sick altered my views on health care policy?

The answer, like health policy itself, is complicated.

For an example of my preillness views, consider a column I wrote in 2013, in the midst of the Obamacare debates. It looked at an Oregon study tracing the effects of a Medicaid expansion that happened via lottery. The results, after a couple of years, showed that access to Medicaid helped people avoid “catastrophic expenditures” and reduced depression. The program did not, however, seem to have much impact on recipients’ physical health.

This was not surprising: From a 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 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 end up encouraging overspending on unnecessary care. Instead, the ideal insurance would cover catastrophic expenses, helping people avoid bankruptcy and the worst kind of mental stress — but avoiding overtreatment and cost inflation.

I was healthy then; two years later I began my strange descent.

And one part of the experience took those preillness views — I’d call them centerright with a libertarian flavor — and pushed them to the left.

This was the part of the experience where I was sick and had 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 diagnoses without pinning down the source of all my blazing pain.

In these months I was given an object lesson in the ambiguities 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 was a tick-borne illness.

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 to know which specialist would be the one who helped, which test or scan would be the one that revealed what was 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 costsensitive 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 in situations where you’re worried that not only your body might be ravaged but your finances as well.

But then comes the complicating factor, the part of my experience that turned me more rightwing. Because once I knew what was wrong and the problem was how to treat it, I entered a world where the medical consensus had little to offer. 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 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 generally not 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? In socialized systems cost control often depends on some centralized authority 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 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 egalitarian advantages at some cost to innovation. Thus many European countries have cheaper prescription drugs than we do, but at a cost to drug development. Americans spend obscene 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 an equalizing floor of health-insurance coverage, it also made me aware of the value of those breakthroughs the importance of having incentives that lead researchers down unexpected paths.

Whatever everyday health insurance coverage is worth to the sick, a cure 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 that don’t. Researchers recently reported evidence that multiple sclerosis is caused by the Epstein-Barr virus. If that discovery yields a cure for MS, it will be worth more to people suffering from the disease than any insurance coverage a government might now offer them.

So if the weakness of the libertarian perspective on health insurance is its tendency to minimize the 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 available.

Alas, I don’t have some perfect policy regime that synthesizes these insights. 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 ealth care reform has ended up.

A decade ago, if you’d told me 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 called that outcome a failure.

Today, though, I have more appreciation for the 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 bloat and unnecessary spending that 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 could take a scalpel to hospital monopolies and their profits I’d do it. If you presented me with a blueprint to expand means-testing in Medicare and use the savings to fund new research, I’d embrace it. If you offered me a plan to reduce prescription costs by reducing regulatory burdens on new treatments, I’d celebrate it.

But once you’ve become part of the American pattern of trying absolutely anything to feel better — and found that spirit essential to your recovery — the idea of medical cost control as a primary policy goal 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 run to excess. But sometimes what seems like waste on the technocrat’s ledger is the lifeline that a desperate patient needs.