Skip to main content

Precision Patient

Precision medicine, or "a medical model that proposes the customization of healthcare, with medical decisions, treatments, practices, or products being tailored to the individual patient" is on fleek.

Or fire, or lit, because fleek is so 2017.

This is what happens when a Gen X'er tries to use the language of those under 25.

Online, at a conference, or even in your doctor's office, you've probably heard this buzzword. If you're an MD reading this, I'm sure you've heard this term used in various circles and may have even used it yourself with patients or in a presentation.

Precision medicine is exciting. Because, SCIENCE!

It seems every year, medical technology is advancing exponentially in how we understand disease and is going to save a lot of lives and reduce a lot of pain and suffering. How can you NOT be excited about precision medicine?

In my world of Crohn's disease, things like "therapeutic drug monitoring" and "biomarkers" are all the rage. Doctors are looking for simpler ways to identify patients who are in a disease flare up or might need a dose change to their medication. They're trying to reduce costs and how much radiation exposure we have or, most importantly, how much bowel prep we have to drink. All great ideas.

So why does precision medicine make me nervous?

Because I'm worried the subjective experience of the patient (deemed "clinical symptoms") will be put on the back burner to the data. If the lab numbers don't jive with what you are telling your doctor, the results can be anything from a sense of not being believed and frustration to feeling like you were gaslighted to not getting proper treatment.

Let me explain myself.

From what I've read, these new treatment strategies work for the majority of patients. Up to 80% of those who are in the research studies and clinical trials. But what happens if you're not in the 80%?

What happens if you're an outlier?

I have weird Crohn's disease. My 16 year path has been fraught with a diagnosis reversal for about a year, a slew of inconclusive or even contradictory tests results, and - my personal fav - test results that are right on the line of abnormal most of the time. It's created a lot of cynicism, even anxiety, about medical tests.

To top it off, an ignored fistula on one of my first barium studies - if I may quote my then doctor "The odds of it being a fistula are so low it's probably an artifact" - led to Joffrey, my entero-vaginal fistula that has literally zero good treatment options.

My Crohn's is limited to the small bowel, although my last MRE showed possible activity in the sigmoid colon after a normal colonoscopy a few months earlier (see what I mean?).  Another MRE showed possible activity in the jejunum. Another is totally normal, while at least 1 other wasn't very helpful because my bowel didn't expand enough to get a good read. My doctor and I have concluded the only way to get a good gauge on my disease activity is through a capsule endoscopy.

When it comes to biomarkers - things in your blood or stool that signal disease activity, it's the same crap. I'm one of the one-third of IBD patients who do not have elevated c-reactive protein (CRP). I can count on 1 hand how many times CRP has been elevated for me. Sedementation rate seems to do a better job, but it's rarely off the charts as one would expect when I'm most symptomatic.

The biomarker getting a lot of attention in IBD these days is fecal calprotectin (FC). FC is essentially a chemical released by your intestines when they're inflamed. It does a pretty good job in identifying active IBD, with the exception of people with isolated small bowel Crohn's disease.


The one FC test I've had was relatively normal, to which I said to my doc "So I literally have no easy way to monitor my disease activity."

Her: "Correct."

I'm fortunate to have a doctor who understands just how atypical my case of Crohn's is. But as precision medicine becomes more and more of a thing, it will guide policy including how insurance companies decide to cover things.

For example, I've been on vedolizumab for a little over a year now. And it works quite well.  But I noticed some increase in symptoms in the last 2 weeks of my 8-week infusion schedule this past summer.  I keep notes in my phone about major symptoms so I don't forget, and there was a clear pattern of increased symptoms the last 2 cycles. So I brought it up at my appointment and my doctor ordered a blood test to measure the levels of the drug in my blood right before my next infusion - therapeutic drug monitoring. Standard practice these days.

The research literature says a therapeutic drug level for maintenance vedolizumab is around 17. When I get into the weeds of the studies that support this, the most often cited study for vedolizumab, the GEMINI study, has around 200 patients. GEMINI-2 has around 80. If I add up all the patients in a review of research on vedolizumab drug monitoring, the number is just shy of 500.

My nerdy statistical brain says 500 is enough for plenty of statistical power. In other words, the odds that the numbers coming out of these studies are wrong are very small.

But can policy, whether it's what my doctor will do in terms of my medication or what my insurance will pay for, be decided based on 500 people? What about the 20% or so that seem, across all of the studies, to not fit the model or trend?  What about them? Nobody seems to write about much, just reports their presence in the context of the 80% awesomeness.

My blood test said my vedolizumab level was 20. Just enough over the cutoff to determine a dose change wasn't going to happen without a test showing disease activity. My report of symptoms wasn't sufficient any more. The next step is the capsule study, which I have yet to schedule because, honestly, I'm afraid to do it.  Not because it will get stuck. But what if it shows nothing?

That should be good news. That would mean my symptoms are due to something else, maybe some bacterial overgrowth or malabsorption issues.

The capsule is really good at finding things that the other tests cannot. And I would have given my right arm to have it done 15 years ago when my diagnosis was put into question (insurance denied it as experimental). But today, with all of my experiences, I've opted to wait it out and see how bad it gets. Since it's not that bad and my symptoms are inconsistent, I will wait. Because, psychologically, I'm not prepared for it not to give me an answer.

And I'll watch the precision medicine landscape continue to change in IBD with every study, every conference presentation, and every insurance policy shift. And I'll hope those of us outliers won't get lost in all of the focus on data as an unintended consequence.

Popular posts from this blog

The Long Shot

I don't even know where to begin as my head is still spinning with the news I received today.  So I'm just going to put it out into the ether:

Entyvio (vedolizumab), which I started for my Crohn's disease about 6 months ago, did what no other approach has:  cleared my eosinophilic esophagitis. 

But wait, isn't Entyvio a drug for inflammatory bowel disease?  Yes.

Is Eosinophilic Esophagitis a type of inflammatory bowel disease?  Nope.

Are IBD and EoE related at all?  As far as we know today, no.  There are very few overlapping cases.

So WTF happened?

Without getting into the biomechanics of a drug that's way over my pay grade in medical understanding, my gastroenterologist had a theory that the way Entyvio works would block the cascade of eosinophils (a part of your immune system, a type of white blood cell) through it's magical way of selectively keeping my immune system from attacking my digestive tract.

She was fucking right.

Since being diagnosed with EoE in ear…


I've been thinking a lot about how we live in an era of infinite access to infinite information (thanks, internet tubes!) yet we still fall into many of the well-established psychological laws, if we can call them that, of human behavior.  Don't worry, this isn't going to be some drawn out post on social psychology. Wikipedia is great for that.

I want to talk about bubbles.  Information bubbles, that is. And how each one of us lives in one to some extent, no matter how educated or enlightened we see ourselves to be. And even if we know we live in said bubble, it takes being shown information that directly conflicts with how you think things are, or should be, and the result is you feel kinda ew - the technical term for "ew" being cognitive dissonance.

I live in a bubble.

In my bubble is the world of academic medicine, academic health psychology, and a circle of psychologists dedicated to people living with chronic digestive illness.  I live in Chicago, a major me…

Everyone Can Fall Down the Rabbit Hole

A few months ago my 3 year old son uttered the words, "I hate you, mommy."  It was after I yelled at him for doing something wrong, which I've long forgotten what exactly the source of our exchange was. But I certainly can remember those words. I can hear them in my head if my brain decides, at random moments, to replay them.

My intellectual, clinical psychologist brain can explain this for days. He's 3, he doesn't know what he's saying, he learned the word hate somewhere else, presumably at preschool, as I discourage its free use in our house. He's using it to express his anger not his true feelings toward me because once he self-regulates (psychobabble for calms the F down) he tells me he loves me.  Blah blah blah.

Regardless of all that knowledge and shit I have from too much education, those words destroy me emotionally.  Maybe they hit me harder because of my profession because my head goes to all the subsequent pathology he'll surely go on to de…