MPNforum Magazine

 Incyte answers the Open Letter

The real measure of caring 

– Zhenya Senyak

The idea of course was ridiculous… A drug company actually caring about the health and well-being of its customers versus its own bottom line. But the skillful marketing program launched by Incyte in support of Jakafi had many of us fooled.

Now that nearly 200 of us signed an open letter to Dr. Paul Friedman, CEO of Incyte expressing our concerns over Jakafi’s costs, we can read his response and know how much Incyte cares.  Incyte’s forthright response to our urgent and courteous pleas to address the astronomical price of Jakafi tells us more about the corporation’s attitude toward patients than all their plastic bracelets and pumped-up hero programs combined.

In addition to the open letter, both Dr. Friedman and his marketing staff people were sent personal copies of the letter two weeks ago and a follow-up request for an open discussion about drug pricing. 

Their response to both letters details the precise level of their concern for MPN patients.

Zero.

Pleas from 200 MPN patients were greeted with stonewall silence.

(An Incyte marketing exec did send us a fresh copy of the two paragaraph corporate boilerplate we already published in our original story.) Not a word from Chairman Friedman.  Not a personal note from any Incyte exec. Why should they bother?)

So let’s set the record straight and look at our options.

In 2009, Incyte pursued fast-track approval of ruxolitinib, now known as Jakafi. Fast-track is an FDA  designation for a drug designed to address unmet, critical medical needs

Jakafi is one of the JAK2 inhibitors resulting from lab discoveries made independently of Incyte and its partner, Novartis.   FDA granted Incyte’s request based on the need for the drug by medium and high-risk myelofibrosis patients.  Jakafi rapidly came to market after extensive testing. Incyte has an obligation to fill that need.

CEO Paul Friedman openly acknowledged MF – that’s us — was simply a convenient target market for Incyte on its way to bigger things in more important diseases.  Letting us know out front that we’re just stepping stones should have been our first clue.

The $7,000+ monthly price tag should have been our second clue that maybe Incyte doesn’t actually care about us all that much. We were soothed however by the simultaneous introduction of an Incyte initiative, Incyte Cares, designed to help us get Jakafi despite our inability to pay.  Many of us won’t qualify or can’t handle the co-pay or live in jurisdictions that won’t approve the drug at that price.

Incyte Cares is indeed a vital connection for MF patients…and equally essential for Incyte. It should be our first stop after insurance turns us down or we just can’t afford the drug for any reason.

Incyte Cares is part of the corporation’s marketing and sales process, analogous to the car salesman helping a customer get financing. “Yeah, I can put you in a 2014 Jakafi…”  It wouldn’t do Incyte’s bottom line any good to have your doc write you a Jakafi Rx you couldn’t fill because of cost. 

There are programs to help cover that cost for most of us. But we have to jump through a few hoops…and in the end someone has to pay for Jakafi …while only Incyte pockets the cash.

So granting Incyte has the legal right to exploit its current monopoly on a life-changing drug, what can we do? 

While Incyte may be immune to patient pressure, governments and regulators are not.  The price of this drug is grossly inflated by any reasonable standard. The fact that whole nations have rejected ruxolitinib pricing is proof enough the drug is not fairly priced.

We can’t go on strike and refuse to take Jakafi. We have MF and its symptoms need to be addressed. But we also need not quake in our boots, like one MPN sage suggested, for fear Incyte will cut off Incyte Cares.   What would they do with all those automobilies piling up in the showroom? How would they explain the drop in revenues to shareholders?

We must protest pricing blood cancer drugs out of common reach…only now we have to shift targets.  Incyte management has already turned a cold shoulder to any discussion.  We can take our appeal for cost-effective pricing of blood cancer drugs to a more receptive audience, our Congressional representatives, healthcare regulators, insurers and emerging federal, state and local managers of healthcare costs.

In this, we are not alone. We can affiliate with hematologists organized on behalf of the same cause and with organizations like NORD and the Leukemia & Lymphoma Society that has carried its appeal to Washington in support of HR 460, The Patients’ Access to Treatments Act of 2013.  (See TSR for details and petition access.)

While we’re organizing for a united patient appeal, you can act individually. Contact your Congressional representative, — you can get the names and contact information you need right here — maybe send a letter to your local editor. Alert your on-line social network to shake out ideas and contacts. And share your thoughts with all of us in this struggle.

Another thing we can do — something we will do —  is remember.

There will come a time when Incyte’s monopoly ends, when we have other options.  We can influence the JAK2 Inhibitor choice of our hematologist.  

Let’s not forget how Incyte exploited its singular advantage to our disadvantage.

Let’s remember what Incyte has always truly cared about.

Take me back to the Contents

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