The Santa Syndrome or the Pharma in the Dell
. I’m naturally cynical. I never believed in Santa Claus and it still shocks me to discover how many of my contemporaries do.
Not so much the fat guy in a red suit and big white beard, but belief in finding a gift under the tree if you’ve been good. A gift placed there by an intruder sliding down the chimney while you’re fast asleep..
Of course, since this is MPNforum, we’re talking about myeloproliferative neoplasms. And thinking about the great mass of MPN patients who have been good about following medical advice, good about taking their meds and entering clinical trials. Patients who swallow experimental drugs expecting the gift of a cure.
We’re talking about the Food Chain that runs from the Pharma in the Dell taking a wife down to the Rat taking the Cheese.
And Santa? Think the jolly “Incyte Cares” Santa distributing free drugs to patients and free dinners, lodging, honoraria and consulting fees to physicians. Ho-Ho-Ho, On Donner, on Blitzen… Somehow, many of us take this fairy tale generosity seriously. Many of us still actually believe Big Pharma cares about us, believe clinical trials are staged for our benefit.
Even though we have seen the true face of Big Pharma as we got booted out of the Sanofi Fedratinib high flying trial without a parachute or a fare thee well we still believe. Even though we got stuck with a $10,000+/month tab for Jakafi after suffering years of clinical trial; Even though we saw the defective trial that got Jakafi approved for PV; and watched the FDA force revelations of Jakafi’s nasty side effects, we still believe.
We still hold on to our belief in Santa Claus even though we watched the sickening corporate merry go round as one failing JAK inhibitor after another changes hands and a new set of stockholders roll the dice for another try with the same molecule, another effort to transfer transfer cash from our pockets to theirs, another clinical trial recruitment campaign.
And then there’s our belief in Santa’s elves doing well while doing good. Researchers, physicians, media…white hats mixed in with black hats and who can tell who’s who without a program? Care of MPN patients is an equal opportunity affair. There are good guys and there are bad guys. Everyone wearing a white lab coat with a stethoscope tossed over a shoulder or a press pass hung from a ribbon around a neck is not a saint.
MPN patient care, research, and clinical trials are a multi-billion dollar industry. But for all the investment, the advertising, publicity, false flag web sites, annual meetings, conferences, grants, studies, papers and all the rest, at the end of the day there’s still just a lump of coal in our stocking. Why?
One good reason: Santa has a turf to protect, patents and products to parlay into another billion dollars. So the more he can extend his market into new MPN applications, the more he can recruit physicians and researchers to jump on his sled and patients to sign up for his clinical trials or get institutional help in paying for his drugs, the sooner he can return to his North Pole counting house and divvy up the profits.
And us? We do have a choice.
We can wise up and get educated, follow the science, get critical about the medical options on offer. We can get organized to demand transparency and a seat at the table, Or we can continue to make up Lists of our hopes and prayers for next year and promise not to be naughty but nice. Meantime, Santa is laughing all the way to the bank and the rat takes the cheese while — Hi-Ho the Derry-O — the cheese stands alone.
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