International MPN News, Science & Opinion

Real Heroes

What’s Incyte doing picking MPN Heroes?

MPN Heroes…without spin

jenny and me crop

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 agoRemember 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?”

Jenny growled.

“Right. Take a look at this.MPN Heroes logo 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?

She nodded.

“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..

MPN HEROES
Joyce cropped head

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.

(From MPNforum)


© 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.

 

Comments on: "Real Heroes" (13)

  1. Gerry Williams said:

    The epidemic of greed has no moral limits. Thank you for speaking up about their amoral practices. We need to do more than just lament. We need to take an action which will hurt their bottom line and redden their faces due to their own wrongdoing.

    Perhaps if this type of information could be advertised in the broader media including television (perhaps something like 60 Minutes or the like) real pressure can be brought to bear.

    Thank you Zhen for stepping up and speaking the truth. Hopefully, more items like this one will expose marketing to be what it is — and is not! It is NOT science and it is NOT realtiy!

  2. Thanks for that picture of Joyce too. I miss her, her comments, and spending time with her at the Mayo conferences.

  3. Bonnie Handel said:

    Great article! What else can we do besides write letters? That didn’t seem to affect Incyte at all! Thank you for writing this eloquent and enjoyable piece. Wag of the tail to Jenny.

    • First, we need to raise awareness. Then we have to organize. Washington is a mess right now but in coming months you’ll see a call to action against these terribly unjust practices. For now, all we need do to spread the word.

  4. OK Zhen, you are the coolest person. Thank you for putting things in perspective and for voicing our frustration……and you have made me feel much better about talking things through with my dog.

  5. John Owen said:

    Absolutely brilliant. The mega person, the fictional entity called a corporation, has evolved into the most favored status of person-hood in our society. But remember, it was real people, unnamed heroes within this super-entity that actually did the creative work to develop the treatment regimen that is now affecting lives. The corporate financial model has complexity and legally limited accountability that places it virtually out of reach. Open source, information schemes that pass below their radar, and political change are the only tools we have. Perhaps we have been “incyted” to action! Love the dog. John

  6. Amanda Ginos said:

    If only the U.S. would take a que from other countries and put a limit on drug pricing. This is why U.S. patients are picking up the bill. Is anyone really surprised that as long as Incyte can get away with it they will? It’s no different than the insurance companies that were driving up peoples premiums while it was still legal before the Affordable Care Act going into effect. This is one area that the ACA let us down. There should be limitation on what a company can charge for a medication. Unfortunately it seems a lot of Americans are very blind about our heath care in comparison to other countries and that we get massively screwed in the U.S. Lets give a big thank you to the lobbyist that pay big bucks to our elected officials to not listen to what the American people need. It’s all about somebodies bottom line, and until we demand our government to change, it always will be.

  7. Zhen, I don’t disagree with you. I have been producing educational programs for patients since 1984 and been a cancer patient since 1996 (leukemia), MF since 2011. I have seen PR campaigns come and go and I agree, transparency and dialogue are always best. You know my goal is to pry money out of these guys and others to do the right thing. But it is not to give them reasons to raise prices or not talk about lowering prices. I am certain this debate about pricing will accelerate. On the other hand, I am ever thankful there is a medicine to is helping me feel well. Let’s hope the availability of others will drive prices down so everyone has the access they need and deserve while companies feel incented enough to do the research in the first place.

  8. Ron Russell said:

    Even as a child, I was easily stung by any example of injustice, whether it was witnessing bullying at school, or racism, or watching the endlessly deplorable news on TV. This situation really wounds me to the heart because I know cancer patients in this situation, including myself, are a helpless group of powerless people. That we reside in a nation that considers health care a privilege, not a right, and advocates and condones disease for profit is deplorable, and as depressing as the cancer I face. Case in point, 27 states have chosen to obstruct the Affordable Health Care law by not implementing it in their states. The irony is that in most of these states, the life expectancy is in the 60s, while in New York or California the life expectancy is in the eighties, yet these deluded souls think they don’t need health insurance.

  9. BONNIE EVANS said:

    MPN FORUM has alerted me to the long fingers of INCYTE. It took awhile for it to sink in but I was able to see what the fuss is all about. The price of INCYTE needs to be reduced substantially. The citizens of the USA are carrying the burden of the costs while other countries pay substantially less. I resent being used as a tool even though there appears to an an ounce of good there. I have no issues with INCYTE making a profit and recouping their costs of research and approval but once pass that point, the price needs to be reasonable and it is far from that right now.

  10. Janice Creed said:

    Hmmmm! Jenny and I comprehend on the same level, I think.

  11. Cyndy Morreale, Denver, Colorado said:

    A canine muse, how perfect … hope the message helps to take a “bite” out of the price of this drug . hellllooooo Incyte … are you listening !?

  12. I think what you are doing is heroic,… brave. Its tough to bend the people who play the game at big pharma to the will of the afflicted on just plain human decency. But…then again there are dogs to fill that gap, and Jenny does so admirably. What a face!

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