What’s Incyte doing picking MPN Heroes?
MPN Heroes…without spin
Opinion, by Jenny and Zhen
Incyte is not evil. At least not noticeably more evil than the medical-drug-insurance complex of which it is a part. The medical-drug-insurance complex is swollen with greed and feeding — in the United States — parasitic support industries that profit from ever higher prices. Each price increase results in higher mark-ups and profits down the line.
But Incyte is our own Wicked Witch of the West, the drug company descended on the MPN community determined to have its way with us. Its message? Incyte cares. It played for awhile but it would be hard to fool us now. The benevolent mask worn by Incyte slipped badly when its September 23rd 2013 hefty price hike went into effect without comment. That was just weeks after patients and physicians pleaded with CEO Paul Friedman to help bring down the bloated price of Jakafi.
The MPN Hero Promotion. Now, the full court press of Incyte PR in advance of on-coming competition has stepped over the foul line. They are no longer crowing over profits on Wall Street…or handing out trinkets. They’re anointing MPN Heroes. In its aggressive push to win MPN friends and influence sales, the drug company is sponsoring an MPN Heroes program, presumably aimed at getting cash donations into the hands of MPN non-profits. (The only non-profit focused 100% on MPN research is the MPN Research Foundation. So if Incyte was serious about furthering MPN research they could just hand over the cash without all the hoopla…unless the hoopla is the point of the exercise.)
Our friends, true heroes, have sickened and died with myelofibrosis. Through it all they have supported each other despite pain and suffering, on Facebook pages, in support lists, in person, in articles and e-mails. Incyte has no right to exploit these efforts for its own commercial ends. There are thousands of quietly heroic figures in our community. Exploitation of their pain and sacrifice is not the basis for a PR effort by a drug company that is profiting mightily by its sale of an overpriced drug to MF patients.
Pleonexia is a Greek word used often by Plato and Aristotle. It means disproportion, wanting more than your fair share, lack of restraint. It’s the disease of greed.
Trying to sort out Incyte’s MPN Heroes stunt in simple terms, I turned to Jenny, my closest buddy, who can usually figure things out by the way they smell.
I was talking to Jenny about Heroes as part of her reality training since she gets confused. She tends to believe everything humans tell her.
“MPN Hero,” I had to remind her, “is a term coined by MPNforum two years ago. Remember that high-priced drug company, Incyte. They’re determined to let you know they really care about us. Now it looks like they care so much they’re even trademarking our phrase.”
She looked at me, troubled.
“You know Incyte, Jenny, they’re the folks infiltrating every MPN media outlet they can find, pumping cash into patient support meetings, patient symposia and MPN commercial sites. Well now they’re kicking off an MPN HERO program. What do you think? Could they be plundering our ideas as well as emptying our bank accounts?”
“Right. Take a look at this. It’s the logo for the Incyte MPN Hero program. Look carefully or you might miss the latest wrinkle in Incyte’s attempt to appear to be a warm fuzzy friend to MPN patients.”
She looked and sniffed at the page a bit but I knew she missed it. She never was much on reading.
“Incyte Corporation is calling for MPN patients to Recognize the champions among us.” Us?
“You see, Jenny, we never realized Incyte was one of us. If the drug corporation is truly suffering from itching, a swollen spleen, weight loss, severe fatigue and all the rest, then we should apologize. This whole time we suspected Incyte was just pretending to join the company of MPN patients and caregivers as a PR and advertising tactic to support its price hiking, opinion manipulating, profiteering habits.”
Jenny stood up, stretched and gave a good long shake which I took to mean: “Well, if Incyte is one of us, maybe we could ask them to lower the price of Jakafi.”
I had to remind her over 200 of us already did ask, politely, reasonably just a few weeks before they raised the price again without a word of explanation. She seemed puzzled, her ears drooped, so I went on.
Buying the company line
““They seem to think because we’re willing to wear their cheap Jakafi colored plastic bracelets and read their propaganda, they can get away with anything. Remember,we never did buy their Made-in-Incyte MF Awareness Day and didn’t turn out for MPN Awareness Day parades or that bell-ringing on Wall Street celebrating their Jakafi profits.”
She scratched. It could have been fleas, it could have been boredom. I scratched her back and continued:
“You see, Jenny, before any competition arrives on the scene, Incyte seems determined to occupy our MPN World. The only alternatives we have are surrender or resist. And resistance is hard when so many of us need Jakafi… a drug based on discoveries made by other scientists.
“It’s even harder to resist when we’re expected to be grateful that Incyte cares enough about us to help us get a $9,000/mo drug for a lousy $50 co-pay…while they pocket the rest of the $8000 or so each month… courtesy of U.S. taxpayers and insurers.”
Pocket, like subterfuge, is not a word Jenny readily understands so I decided to wrap up this session. By this time I’m talking to myself anyhow. I reached for two of her heroes for my final point.
“It takes a real hero like Rin Tin Tin or Lassie to resist Incyte’s crude grasp for popularity and profit at our expense. But real heroes do exist, right in our midst. It might help to look at the opening of the original MPN Heroes article just to remind our friends that not everything is spun and twisted by corporate advertising. Right?”
She asked for a cookie..
SOMEWHERE BETWEEN GODS AND THE REST OF US IS THE REALM OF HEROES.
Heroes aren’t perfect….just heroic. Our own MPN heroes rise above their own circumstances to lead, inspire, and encourage us in our common battle against a deadly enemy.
They help us define our path and in the end, their actions and their stories are essential to our survival. Heroes broaden our options, lift our hearts and return us to life with new hope and strength..
Since our launch five months ago our MPNforum heroes have included patients and caregivers, physicians, clinical investigators, scientists — Karl, Bonnie and Joe, Cyndy and Sam, Jeremy, Harvey, Chris, Barbara, Harriet…the list just goes on.
And then there are the heroes who simply stay by their post day after day, caring physicians and list owners managing on-line patient support groups, answering questions, offering hope, experience and camaraderie.
© MPNforum.com, 2013. Unauthorized use and/or duplication of this material without express and written permission is prohibited. Excerpts and links may be used, provided that full and clear credit is given to MPNforum.com with appropriate and specific direction to the original content.