• Trapped in the System: A Sick Doctor’s Story

    The following originally appeared on The Upshot (copyright 2015, The New York Times Company).

    We spend a lot of time talking about various metrics of quality or access in the American health care system. The problem with many of them is that they rarely seem to capture the issues that people face in dealing with care. Although many metrics are improving, problems remain that still seem insurmountable.

    It’s true that the number of people with no insurance has gone down significantly since the Affordable Care Act was passed. But that’s only one measure of access. In many other ways, access is still surprisingly bad. I rarely use anecdotes to make my point, but in this column I’ll make an exception.

    I have ulcerative colitis, and have had it for many years. When it was poorly controlled, I lived in constant fear of not being near a bathroom. The half-hour commute to my job often necessitated a stop on the way to work because I feared I would lose control of my bowels. My wife could tell you many stories about how I made innovative use of my babies’ diapers in cases of emergencies.

    But a number of years ago, after I found that drug after drug didn’t work, my gastroenterologist suggested an older immunosuppressant. I’m a doctor, and I recognized it as a drug often used to treat cancer. It carried with it some significant side effects, most notably a small chance of myelosuppression, in which your bone marrow shuts down and produces too few blood cells.

    That horrified my wife. But she didn’t appreciate that this was, to me, a small price to pay for the opportunity not to be constantly worried about my proximity to a toilet. I weighed the benefits versus the harms. I decided to give it a go.

    The medicine changed my life. I have few, if any, symptoms anymore. It’s gotten to where I can now feel annoyance when my children need to go to the bathroom when we’re out. By my last colonoscopy, my ulcerative colitis had gone into remission. I feel as if I have the bowels of a normal person, for which I am utterly grateful.

    The medicine is old and it’s generic. It costs about $80 for three months even though I haven’t met my deductible. But this story isn’t about money. This is about the nightmare of how hard it is for me to get the drug.

    Every three months, I run out of my medication. In order to get more, I need a new prescription. In order to get the prescription, I need to have lab testing to prove to my doctor that I don’t have anemia. This all sounds simple, and it’s the same process every three months. But it’s never the same, and it’s never easy.

    Let’s start with the lab testing. At various times, my insurance plan (which is excellent, by the way) changes which laboratory facilities it will cover fully. Often, these are not labs that are housed in the huge health care system for which I work. I often have to go elsewhere to have my blood drawn. If I change facilities, I have to get a new prescription for the labs, since they can’t share with one another.

    Further, even though my lab orders are good for a year — and I need to have them drawn basically forever — the labs recognize them for only six months. So sometimes I have to get in touch with my doctor and get a new lab order. Often, they send over the old order, because they think it’s good for a year, in which case I have to go back to them and ask for a newly written one, because the lab won’t recognize the really-still-valid old one. Worse, they often just fax the order to the lab itself, thinking they’re helping me, so that I don’t realize they sent over an old one until I’m already there, and it’s too late.

    After I get that sorted out, I have my blood drawn and analyzed. But because the laboratory and my doctor are in completely different health care systems, the lab results won’t show up in my doctor’s electronic database. I have to beg the lab to remember to fax over the results — using paper — which it often fails to do.

    My next step is to check if the pharmacy I use is still under contract with my insurance plan. The medication I use needs to be ordered at a mail-order pharmacy, because my insurance won’t cover it at a local facility. My insurance plan has changed its mail-order pharmacy of choice more than once in the last few years, which necessitates that I inform my physician about the change.

    I also have to open a new account with the new pharmacy and give it my payment information so that it can process everything once it has the order from the doctor. I do this before getting the prescription called in because I don’t want anything to get slowed down. This is a good time to explain that I can’t do much else ahead of time because the pharmacy and the insurance plan both know I have a three-month supply of the drug and won’t authorize me to get more too much in advance.

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