You can pay to jump the queue: Insurance delays for Hodgkins Disease treatment

Prof. Mark Kleiman’s story:

Now that Michael Moore's SICKO has raised again the question why the Canadian health care system functions so much better than ours, supporters of the current mess have gone back to chanting: Hip replacement! Rationing! Hip replacement! Rationing! Markets! Markets! Markets! Markets! Sis, boom bah! or words to that effect.

The response, of course, is that rationing, including rationing by queuing, is just as much a feature of the U.S. system as it is of competing systems. And while waiting for a hip replacement sounds pretty bad, there are worse things to have to wait for. Take it from me.

In the spring of the year 2000, after several months of what in retrospect was intolerable negligence both by me and by my internist, I was diagnosed with cancer. I had fancy-dancy health insurance through my employer, which as it happens also owns one of the world's dozen best medical centers.

The diagnosis of cancer, based on symptoms plus the chest X-ray that should have been done several months earlier, was made very early in May. By then, I had dropped forty-some pounds, had almost no voice, couldn't walk more than 30 yards without puffing, and had a resting respiration rate of 20 breaths per minute. My friend Gary Emmett, who made what turned out to be the correct diagnosis a month earlier just by listening to me on the telephone, came out to visit, and told the rest of my friends that if they wanted to see me alive they'd better make their plane reservations in a hurry. (The technical term is "Stage IV-B." Not good.)

But of course you can't treat "cancer." You have to treat some specific cancer. And you can't treat it until you figure out what it is.

That process took just about one full month, a month during which my chances of survival were dropping fairly steadily and the intensity — and therefore the side-effect profile — of the treatment that would be required if we ever got the damned thing figured out was rising in parallel. It would have taken longer — quite possibly fatally longer — if Al Carnesale, whom I'd known when we were both at the Kennedy School, and who by then was the Chancellor of UCLA and thus at some ethereal level responsible for both me and the hospital, hadn't sent a note to the guy who runs the entire UCLA medical area (hospital and medical school). The note politely hinted that it would be at least marginally preferable if my department didn't have to go through the hassle of recruiting a replacement. After that, things speeded up somewhat.

What absorbed that month? Mostly waiting.

After the chest X-ray, I needed to see an oncologist. I couldn't make an appointment until I had the approval of the insurance company for the referral. That took a few days. Getting on the oncologist's schedule took a few more days.

After the oncologist saw me, he wanted a bone marrow sample to send to the pathologists to figure out what the cancer might be. I couldn't make an appointment for the bone marrow procedure until the insurance company approved it. Then I had to wait for the bone-marrow extractor to have time on his busy schedule.

When it turned out that there wasn't enough marrow to test, I needed a lymph-node biopsy. More waiting for an insurance approval and more waiting for an appointment. Having seen the head-and-neck surgeon who was going to do the biopsy, I couldn't have the biopsy right away because the insurance company wouldn't approve it as an in-patient procedure and there was queue for outpatient biopsy operating room time. Anyway, the guy who had seen me didn't have any time free on his dance card for the next several weeks, so he sent me to another surgeon to actually do the procedure.

When I showed up for the outpatient biopsy, the anaesthesiologist took one look at my chart and flatly refused to put me under for the procedure except in an in-patient setting, on what seemed like the reasonable grounds that otherwise I could easily die on the table. That meant, of course, more waiting for another approval and another appointment.

All this, let's recall, with the Chancellor breathing down the neck of the boss of the medical area on behalf of a full professor at the university that owns the hospital. So my experience with the system was probably about as good as it gets except for corporate executives using places like the Mayo Clinic or family members of people on the boards of directors of hospitals. (Apparently it's generally understood that if you stump up enough in the way of contributions to get on the board of the hospital, you're entitled to priority care; that's how not-for-profit hospitals raise capital.)

It was only later that I discovered why the insurance company was stalling; I had an option, which I didn't know I had, to avoid all the approvals by going to "Tier II," which would have meant higher co-payments. The process is designed to get very sick or prosperous patients to pay to jump the queue.

I don't know how many people my insurance company waited to death that year, but I'm certain the number wasn't zero. As I say, in my case it was a damned close-run thing. (Fortunately, the eventual diagnosis was of a curable cancer, and the actual treatment I got once the diagnosis was made was prompt, well-executed, and entirely successful.)

That's on top of the procedures the insurance companies simply refuse to pay for at all because some clerk decides they aren't "medically necessary," which for most people means that the queue for that service is of infinite length. So can we hear at little less about how long Canadians wait to get their hips replaced?

Now I might be inclined, if I ran the zoo, to have a system that used less rationing of all kinds. It's true that one key to reducing health care costs is to deliver less of the very expensive forms of health care: ideally, less of that portion of health care that does harm, or at least doesn't do enough good to justify its costs. But I'm not convinced that cost containment — as opposed to the related but conceptually distinct question of how to keep health care costs from financially ruining individual households and companies, and how to prevent the search for health coverage from distorting labor-market decisions — deserves as high a priority on the list of health care reform goals as most health policy wonks give it.
It seems to me likely that most health care is, in Robert Frank's terms, "non-competitively consumed," while much of the rest of household spending is on goods that are competitively consumed. If so, it's not easy to see the case for spending less on health care so we can all spend more money, in the course of our shorter and sicker lives, trying to live in bigger houses, have classier consumer electronics, drive faster cars, and wear fancier clothing and wristwatches than our brothers-in-law.

But however you come down on that argument, the claim that replacing the current insurance mishmash with a better-integrated payment and decision-making process would mean more rationing, or even more rationing-by-queuing, is the sort of palpable falsehood that people who are perfectly honorable in real life are only too willing to utter in ideological conflict, especially if paid to do so. Under a single-payer system we'd have an idea who was waiting how long for what, while under the current system no such data are available. In all my waiting, I was never in a formal "queue," and if the cancer had gotten me before the pathologist figured out what it was no one would have counted that death as the result of rationing. But only in wingnut health-policy fantasyland is not measuring a problem the same as not having a problem.

Update: I had Hodgkins Disease, and got the right treatment for it. But patients with the more common and less curable non-Hodgkins Lymphoma seem to mostly be getting the wrong treatment, due to the financial incentives built into the current system of paying for health care.

Advice for patients awaiting insurers’ approval: Ask your insurer what alternatives you have.

Read another of our insurance company stories, or read more fromProf. Kleiman’s blog.