The Norm, Hope And Statistics

The following is a boring exercise in population statistics. But it has a pay-off.

What's the norm for bipolars in the mental health world? I asked the head of psychiatry at a big HMO one day last year. We were talking about how things were in the world of bipolars and medications and treatment and results. And I began asking questions I never had before because this particular doctor can access a vast database on psych patients going back to 1994. If he didn't have precise numbers, he was willing to make educated estimates. For example: What percentage of patients get diagnosed, stick with treatment and have good long-term results? He estimated that it was much less than 50 percent--somewhere closer to 33 percent. Hang onto that 33 percent for a second.

What's more he said that, in his experience, only 50 percent of diagnosed bipolars came close to complying with treatment. That means, if his numbers are legit, that on the order of 50 percent of all diagnosed bipolars don't get treatment at all. His estimate is that only about 50 percent of all people who have the disorder get diagnosed at all.

Of the 50 percent who got diagnosed maybe 50 percent--again, this is an on the order of estimate--of them stick with treatment most the time. That means that there are a ton of bipolars out--perhaps as much as 75 percent of the population of bipolars--who are either off-meds and treatment altogether or who are going back and forth with what the docs like to call compliance. The doctor agreed with me that about 25 percent of all bipolars his HMO had data on--and there are about 20,000 bipolars in this HMO at any one time--consistently stuck with treatment.

Twenty-five percent of the 50 percent who get diagnosed--roughly 13 percent of all bipolars get diagnosed and are consistent with treatment and meds and so on. I'm not sure I believe that number as an absolute. So let's be nice and assume it's 20 percent.

Remember that 33 percent? Thirty-three percent of all bipolars get diagnosed, stick with treatment and have good results. So, apply that 33 percent to the 13 percent to 20 percent above: about 4 percent to 7 percent of all bipolars, diagnosed or not, wind up with the kind of results that we are told we are striving for by having people get diagnosed and stick with treatment in the first place. And, just for giggles, let me boost that final number to 10 percent. We weren't talking full symptom remission here. We were just talking about having things work well enough to where your life wasn't thrown off-track every two months--kind of a precondition for having your life progress at all when you are grappling with a mental illness.

That's a number I don't want to believe at all: that 10 percent of the roughly 6 million to 9 million bipolars in the American population--I'm using 2 percent to 3 percent of the total population, kids included, as my base--are realizing something approaching the rhetorical and scientific promises of the psychopharmacological revolution. Fewer than 1 million people. (For the record, I consider the NIMH's estimate of 2.2 million adult bipolars to be out of date--it's from 1992--and diagnoses and prevalence estimates have become more aggressive since then.)

We walked through the numbers that way and both the doctor and I were a bit stunned at what it meant--not many people at all, ok a small fraction, are getting good results. At that point, I asked him about my situation just to test that number in a more anecdotal way. My deal is that I have almost perfectly med compliant for 17 years--98.6 percent of the time--and have after many years of struggle had positive results in my life. That's the only place where results matter, after all.

So how common was my experience? I asked. "You are very rare," he answered.

I am still shocked by that bit of casual statistics. Because I am supposed to be the norm we are all expecting as a result of diagnosis and treatment. Mental health treatment is commonly spoken of by researchers, clinicians, drug companies and advocates as being hope-filled. There is hope, as the good folks at NAMI put it.

I am clearly nowhere near the norm. The universe of those who justify all the hope hype is far too small to be remotely acceptable. Even if you took the pollyannish view and said, "Well, we just need to get everyone diagnosed and sticking with treatment all the time," (a noble, but illogical goal) then you might get to maybe 30 percent of all bipolars having great experiences--and I think I am being wildly optimistic there.

It makes me bitter, at times, to consider that I am one of the lucky ones. I earned my luck to be sure. But a .100 batting average will get you sent to the minor leagues. And we all keep claiming that we are getting major league performance.

And that's why I don't use the word hope very often. At least not as things stand now.

And, yet, tonight I told a friend of mine, a bipolar of perhaps two years experience, that she's got to stick with treatment. She said that meds were making her feel as though her personality had been stripped from her. I know, I told her. But the only way to find out if you'll be lucky is to find out.

Posted by Philip Dawdy at April 26, 2006 01:12 AM
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