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 ofmyelosuppression, 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 to not 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 the bathroom when we’re out. By my last colonoscopy, my ulcerative colitishad 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.
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 lab results are there already. 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.
It’s at this point 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.
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