International MPN News, Science & Opinion

MPN Super Hero or Sell Out?

Advance Report from ASH- San Francisco 

Against all odds Incyte and Cure named Zhen an MPN Hero at this year’s ASH-associated event in San Francisco.

Even stranger, he accepted the award.

By Zhenya Senyak

Incyte could not have selected a patient more publicly opposed to its corporate policies. From the very beginning I have loudly objected to Incyte’s predatory pricing of Jakafinow over $10,000/month.

Zhenya Senyak

Zhenya Senyak

http://www.curetoday.com/articles/Patient-Advocates-Honored-as-MPN-Heroes

I have written about Incyte’s aggressive marketing tactics, published an open letter to the corporation’s CEO requesting price reductions, and denied the drug company’s right to sponsor awards for an MPN patient community it targeted as its primary market.

So what is Incyte doing offering me the award along with the cash and perks that go along with it? And what am I doing stepping up on stage to accept it ?

I can’t speak to Incyte’s motivations. The nomination was made by a member of the MPN community, the selection committee is independent of both Incyte and Cure Magazine, co-sponsors of the event. But the $25,000 check divided in my heroic name and paid to the MPN Research Foundation and the Richard T. Silver Center, was signed by Incyte. So the organizers surely knew whom they were honoring.

I can speak to my own motivations in accepting. Money itself was a factor, of course. We have run fundraisers for the Foundation. I believe in the people and their crucial work in finding and funding MPN research. I believe in the vision of the Silver Center, newly launched this year, and have faith in the people guiding it. A chance to contribute to their vital work could not be lightly passed up.

And there’s another financial consideration. The MPNforum community of patients and caregivers contributed small donations to fund our coverage of ASH, hematology’s most important scientific meeting of the year. MPNforum paid for my trip to San Francisco. The MPN Hero program offered to reimburse those direct costs to MPNforum. The chance to help fund the Foundation and shore up MPNforum’s resources was definitely a factor.

But money alone wouldn’t be enough to cross over to the dark side.

Truth is, accepting this award doesn’t feel at all like going to bed with the devil. Incyte had the vision, guts and talent to field the first FDA-approved JAK inhibitor at a time there was little reason to believe it would work or that the myelofibrosis market was big enough to support the effort. I respect and like the Incyte people I know. The company was a small, smart and innovative risk-taker. That was before the sticker price of Jakafi was announced.

Drug pricing drove a wedge between patients and Incyte. This is more of a public healthcare issue — cancer drug pricing bankrupting governments, institutions and patients alike — than denying patients a potentially lifesaving drug. Incyte’s efforts to assure most patients’ access to Jakafi have been largely successful outside of the Medicare Part D world. But the reality of pricing a life-sustaining drug beyond reasonable, affordable limits is now part of the Incyte corporate identification.

No mistake about it. The price of cancer drugs is hideously inflated beyond any relationship to costs or return on investment. Even after Incyte recovered its development costs and moved on to new ruxolitinib applications, my own Medicare co-pay for Jakafi, a Tier 4 drug, would be $3000/month.

The positive thrust of the MPN Hero program should not be blunted by the all too common Big Pharma pricing practices.

This overblown little MPN Hero program achieved something beyond its promotional origins. SAMSUNG I was able to see the effect for myself at its launch at New Orleans ASH, last year. A well designed, richly human multi-media exhibit celebrated the contribution of people — healthcare providers, patients and family members — to our common welfare. And at ASH, in the hematological world’s center stage, the Incyte MPN Hero exhibit drew attention to our myeloproliferative neoplasms, among the most lightly populated hematological disorders of them all.

Without false modesty, I know what I have done to support this community. It has been a choiceless, dedicated and rewarding effort but I am not any kind of hero nor am I a traitor. My loyalties are firmly with the MPN patient world.

I accept the award in honor of those patients and caregivers in our community who are truly inspiring: Harvey Gould and Ian Sweet, for Kathy Dubin Flynn and Marina Peed, for Chris Harper, Barbara Van Husen, Robert, Genny, Dolf, Karl, Kelley, Mary, Ann, Antje, Ellen, Sam, Joyce, Diane, Jason, Rochelle, Barbara, Bonnie, Arch, Jeremy, David and hosts of others – some gone, some standing beside us today.

MPN Heroes show us the way to survive despite the unequal struggle we face.

In celebration of all those, known and unnamed, who sacrifice their time and energy to uplift, encourage, and support fellow MPN patients suffering from this mysterious, often deadly, disease, I accepted this award.

And despite the commercial overtones of their efforts, I sincerely thank Incyte and Cure Magazine for shining a bright light on our orphan disease and underscoring the need for us to work together selflessly to help each other overcome its ravages.

 

 

 

Comments on: "MPN Super Hero or Sell Out?" (18)

  1. Karen Ulshafer said:

    You are a humble hero, Zhen. I have learned so much from your well written articles since I joined the MPN community. You, your website, the articles from the experts have enlighten me on much that is going on in the medical/hematological field of MF, the good, the bad and the hopeful…
    Thank you and Congratulations…your voice (representing us) is heard.

  2. I am so grateful for all of your good work, Zhen.

  3. I am an MPN patient and am currently taking Jakafi. My current insurance policy has covered that vast majority of my Jakafi costs after I’ve met my yearly “out of pocket” amount. You mentioned in your letter above that your copay for Jakafi under Medicare Part D would be $3000 per month. I am curious to know (because I am looking toward retirement and being eligible for Medicare) whether you also your private health insurance helps with the $3000 cost?

    • Hi, Fran… I have no private health insurance, Medicare Part D only. I believe Incyte would help defray part of that cost by referring me to one of the nonprofits in the Cancer Care area..but Incyte itself doesn’t, I believe, participate in Part D programs.

    • Thank you, Zhen….for your reply. Thank you also for all that you have done and continue to do to help MF patients!!

  4. Well written as is the norm from you. Let me add my thanks Zhen, for all that you do.

  5. Richard T. Silver, MD said:

    Great Zhen and many thanks for all you did and do. Best,dick Sent from my iPhone

  6. This is good news. I am glad that you were chosen. You deserve it.

  7. Well done Zhen, article is true to your word of commitment to us, the patients.
    The money awarded will be well used for research of mpn and info from you to us.
    Right decision.

  8. marilyn oslander said:

    God Bless your tireless efforts for us all!!
    Anything I can do to get the word out-Marketing, SHARE WITH US ALL.
    Very grateful to you Superman

  9. Patrick Hensley said:

    Congratulations on this well deserved award and on a very good acceptance article. May the work continue. All the Best, Pat

  10. David Denny said:

    Excellent article addressing thoughts that I also had. They treated us all well in San Francisco, while charging us outrageous prices for ruxolitinib. There was some irony in that. But I hope i think the people in charge of this program are sincere in their desire to get the word out about MPNs. And this heroes program was right on target in selecting you along with the others, for that purpose. Keep on going, Zhen!

  11. Jamie Strause said:

    Great stuff Zhen. Well deserved and congrats!

  12. Barbara Kurtz said:

    The cape looks good on you. You wear it well.

  13. susan fogelson said:

    Bravo, Zhen!Susan Fogelson

  14. M. Bianchi said:

    Congratulations, Zhen! For all you do, you are a hero!

  15. Zhen, Thank you for accepting the award and recognition!
    What you describe is the “Yes, And” world in which we live. It needn’t be “either/or” as that is the least productive and healthy way of being. I am VERY glad that your diligent work over time is recognized well beyond your readers; especially from those with financial resources to make the work easier.

    We all know that the award money doesn’t have nearly enough commas to quiet your voice as a patient advocate. :)

    Creating more awareness among the ASH community and others is very important. And large companies have far more resources to make it happen. Consider this a win-win!

    And THANK YOU for all you do for us!

    Marina

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: