Trapped in the System: A Sick Doctor’s Story

By Aaron E. Carroll
The Upshot, The New York Times, September 21, 2015

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.

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.

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.

It’s at this point that I try to get in touch with my doctor, previously through a phone message, and more recently through an online site. If I’m lucky, which usually isn’t the case, the doctor will already have the lab results. If not, I have to go back to the lab and beg it again to fax over the results. If the doctor has the lab results, and they’re normal (they always are), a nurse will then call in the prescription. This usually takes a few days.

Then the pharmacy will finally start to move. Even that is painful. Once my drug was on “back order,” and since it was the only pharmacy I was permitted to go to, I just had to wait. It always takes at least a few days for me to get the drug, though, because processing takes time. I always, no matter how hard I try, run out of medicine before I get the new bottle, during which I hold my breath and hope nothing goes wrong.

I do this four times a year. It’s always a stressful time for me, and stress isn’t a good thing for a person with my disease.

This could be so much simpler. Why do I have to get a new prescription for the lab testing every six months? Why can’t I get this simple blood test more conveniently? Why can’t the electronic systems of the labs and the clinical offices talk to each other? Why do I need a new prescription for this medication every three months? Why can I use only one pharmacy when the medication is generic and so inexpensive?

There is no bad guy here. I love the drug company that created this medication. The price is more than reasonable. I love the doctor who prescribed it to me. My insurance company has never refused to cover my care, and has always been honest with me. The laboratory personnel are professional and competent. It’s the system — the way all these things work, or fail to work, together — that’s the issue.

The Affordable Care Act, which seems so complicated to so many, was almost entirely about getting more people in the United States health insurance. That was just a first step, arguably an easy one, and we’re still fighting about it. Reforming the ways in which we actually deliver care and try to improve outcomes? That’s so much more important, and we barely talk about that at all. But that’s what matters to the people who use the system, and it’s why so many of them are frustrated.

Because of my job, I probably know more about the health care system and how it works than most people in the United States. Yet if this is how much trouble I have navigating a simple refilling of my medication, I don’t know how the rest of America does it, especially those with much more complicated issues than mine.…


Answers to your questions about “Trapped in the System: A Sick Doctor’s Story”

By Aaron Carroll
The Incidental Economist, September 23, 2015

I received more than my usual share of feedback from this week’s Upshot column. I thought I might answer some of the most common comments and questions here:

1. If we only had a single payer system. That would fix this, right?

Well, I’m not sure. I understand your impulse, but that would only solve some of the insurance problems. Medicare for all wouldn’t make it so that the lab, pharmacy, and doctor’s office shared an information system, or could even reliably share information. It wouldn’t change the fact that I need to jump through the order hoops, or the authorization hoops. It might make things easier, but it wouldn’t solve all of the problems. Ask people who have Medicare (which is much closer to single payer) if things are seamless. I doubt you’ll get a universally positive response.…

Dr. Aaron Carroll’s frank discussion of his chronic medical problem and the nuisances he faces in interacting with our health care system struck a chord with many – both for the empathy engendered because of his medical condition, and especially for the crying shame that this prominent physician has to go through hoops to make our health care system work for him, suggesting that it might not work well for any of us.

Of the over 700 responses that he received, a common theme was that he wouldn’t have these problems if we had a single payer system. He responds that he is not sure. He suggests that people on Medicare, as a proxy for single payer, may find that their care is not so seamless either. Well, he hasn’t experienced Medicare as a patient since he is still on his employer-sponsored plan, and he hasn’t experienced Medicare directly as a physician either since he is a pediatrician.

I think that I can help him on this. I am a family physician, now retired from practice, and I never had the problems with my Medicare patients that I had with my managed care patients – problems similar to those he describes. I also have a few chronic disorders myself that require interaction with the health care system. I am covered under the traditional Medicare program with a Medigap supplement. I have had none of the problems that Dr. Carroll describes, except for nuisance requirements and limitations for my Part D drug coverage – but then Part D, by design, is much more like the managed care coverage that creates barriers to care (restrictive formularies, limited choice of pharmacies, logistical hurdles in filling prescriptions, etc.).

He is correct that interoperability of computer systems remains a problem, but that is a failure of George Bush and David Brailer in insisting that interoperability issues be left to the private sector to address. Players in the private sector strive for dominance and depend on a lack of interoperability to keep competitors out. The government is now encouraging improvements in interoperability, but how do you fix the mess that has been created? At any rate, the prospects for improving interoperability would be much greater under a single payer – improved Medicare for all – than they are under our fragmented, competitive multi-payer system.

Dr. Carroll says there is no bad guy here, but that “It’s the system — the way all these things work, or fail to work, together — that’s the issue.” But that’s the point. Having our entire health care delivery system integrated under a well-designed single payer model would make the system work far better for all of us – patients and physicians alike.

(Aaron Carroll is a professor of pediatrics at Indiana University School of Medicine. He is a highly respected authority in health policy who blogs in The New York Times, The Incidental Economist, and JAMA. He is co-author of a widely-quoted study demonstrating that three-fifths of physicians “support government legislation to establish national health insurance.”)