A month ago, I lost a niece to cancer. She had been diagnosed with acute lymphocytic leukemia (ALL). She died less than four weeks after our family was informed of the diagnosis.
I still haven’t recovered from the shock of that event. But it wasn’t because she died from cancer — we all know cancer kills.
What I couldn’t swallow was how helplessly she died. Didn’t have a fighting chance.
You see, she never received any real treatment: no chemo, no targeted therapy, no nothing.
You know what she got? Barley.
Chalk up another victim of cancer disinformation. The perpetrators are out there, trumpeting their messages of false hope, strewing the bodies of their faithful behind them.
Who’s stopping them in their tracks? Who’s holding the line?
Who cares about chemotherapy?
Let me continue my niece’s story.
You know why she did not receive chemotherapy? It’s because her doctors mentioned to her caregivers that her heart was too weak for her to receive the full initial regimen.
So instead of three drugs, she would start with only two.
But nobody ever explained to the caregivers the consequences of the patient receiving only two drugs — or, more importantly, the consequences of receiving no drugs at all.
So the caregivers made the best judgment they could, with their nonexistent medical backgrounds: they decided that if three drugs were the standard, two drugs would be pointless.
With that, they took the child home, never returned to the hospital, and searched for help elsewhere.
Conveniently, they found — or were found by — a doctor who proposed a barley product.
No, he was not an oncologist. But he was a licensed physician. So they believed him.
The lies we love to hear
It’s terribly easy to believe anything and anybody when they are telling you what you wanted to hear in the first place. “You can eradicate cancer with some fruit or herb that you can pick from some garden and add to your daily salad.” What desperate patient or caregiver doesn’t want to hear that?
That’s what makes these messages so popular — and so deadly.
So it is important for us in the healthcare industry to impeach these messages strategically and aggressively in every platform by which they are spread: in the hospital vicinities, in direct marketing websites, in the homes of cancer patients.
Because as industries concerned with saving lives by fighting sickness, we need to remember that the battle is not only in the patient’s body.
The decisive battle, the one that spells the difference between treatment adherence and nonadherence, is the battle between medical information and disinformation. This occurs in the patients’ and caregivers’ minds.
The power of the caregiver
Now here’s a question we should have asked earlier in this article: why didn’t my niece’s caregivers receive the information they needed from the doctors managing the child’s care?
That lack of information left a gaping hole that disinformation was happy to fill. Why did that hole exist?
At this point, we could form a long list of why some doctors would not sit down an extra 10 minutes to give their patients’ caregivers the nitty-gritty of the recommended treatment regimen and the consequences of not following it.
But suffice it to say that doctors don’t always have the time, energy, inclination, talent, or foresight to give patients and caregivers all the information they need.
In addition, the definition of “all the information they need” varies widely from one doctor to another. In a few (but certainly not all) cases I have seen, the doctors’ definition of “all the information they need” was “because I said so.”
Unfortunately, this approach neglects the fact that caregivers are autonomously capable of overruling a doctor’s prescription.
The moment these caregivers go on Facebook (and they will), they will be bombarded with posts that say chemotherapy drugs are poisonous while this so-and-so natural product holds the secret cancer cure that Big Pharma is trying to suppress.
If that information goes unchallenged, what do you think their next course of action will be?
Your guess is as tragic as mine.
A call to arms
So again, we ask: Who will challenge these dealers of disinformation? Who will fight falsity with facts? Who will hold the line?
It has to be us in the healthcare communications industry, because if it isn’t us, nobody else will.
We who care the most about saving lives through the words we publish have to jump into the fray, strategically and aggressively showing up these falsifiers in every platform by which they spread their lies.
Because we know that the battle to save lives is not only fought in the patient’s body.
The decisive battle — the one that spells the difference between life and death — is between medical information and disinformation.
That battle is fought and won in the patients’ and their caregivers’ minds.