International MPN News, Science & Opinion

An Open Letter to Paul Friedman, MD and CEO, Incyte

A patient appeal to make Jakafi affordable.

Zhenya Senyak

Dear Dr. Friedman…

Recently the pressure to reduce the price of Jakafi and other blood cancer drugs has been building. You’re familiar with the plea for such reduction that appeared this Spring in an appeal signed by 100+ hematologists from 15 countries. Dr. Richard Silver added his voice in a videotape on the same subject and MPNforum’s lead story this month details the lack of cost-effective pricing for Jakafi and its impact on patient populations.

Two years ago MPNforum had the pleasure of interviewing you as ruxolitinib was wrapping up its Phase III trials.  The MPN community then had great hopes that you and your team would succeed in developing and testing a drug to treat the worst symptoms of myelofibrosis.

Incyte took the multimillion dollar do-or-die risk of betting on ruxolitinib. As did several hundred MF patients. Over several years through international trials ruxo made its way through the approval process. It was never a sure thing that, in the end, an effective med would finally emerge, approved by FDA, to provide symptomatic relief to MF patients. You succeeded.

Jakafi has been an unquestioned blessing for MF patients.  Many MF patients suddenly had the option to regain a reasonable quality of life, to find relief from pain, to recover from weakness. There have been some issues,  but Jakafi is an option where before there was none.

There are many measures of success. For the full year, Incyte is now expecting sales of a quarter billion dollars plus royalities from Novartis on Jakavi sales. And sits on a product pipeline swollen with promising offshoots of Jakafi.

We rejoice in your profit. Your success means our relief. But we are astonished at the continued astronomical price levels of Jakafi — $84,000 – $90,000 + annually  – even after Incyte has amply recovered its Investment costs, enriched its partner, Novartis, registered strong profits and saw its stock price more than double in value.

The great disparity between the rewards Incyte is getting from marketing Jakafi and the lack of affordable drug pricing for patients whose pain and clinical trial helped acquire those rewards has to be addressed.  Despite Incyte’s very significant efforts to make Jakafi available to patients who otherwise could not afford the drug, there are still very sick myelofibrosis patients who are unable to acquire Jakafi due to its high cost. Moreover,  the heavy impact of these costs on the medical support system, insurers and Medicare, drains scarce funds from already stressed budgets.

Since hundreds of us participated in the Phase I/II and COMFORT trials, we have a stake in this drug.  There is no path from the bench to bedside that doesn’t go through the clinical trial.

The downside of Jakafi:  Jakafi may have nearly miraculous short-term results for many but it is not curative.  Jakafi offered many of us an alternative to splenomegaly or risky stem cell transplant. However, there’s is a dark side to this option since Jakafi doesn’t affect the natural course of the disease but may control the worst of MF symptom  The downside of masking symptoms is an early MF patient can easily slip into high-risk MF or progress to AML or grow too anemic or thrombocytopenic for an SCT during the course of the therapy.

And an even more fundamental consequence affecting all MPN patients: The very public financial success of Jakafi in the marketplace has drawn research investment dollars into the JAK inhibitor pool, funding lookalike compounds instead of encouraging researchers to invest in projects designed to uncover the source and cure of MPNs.

Shortly, there will likely be at least three companies offering protein kinase inhibitors** for the MPN market.  A significant reduction by Incyte in the price of Jakafi – forcing competitors to meet a lower price point and thus reduce profit projections —  could encourage research and development investment to flow out of this clogged channel into new and more productive research channels.

In these unsettled economic times, with medical insurance and access to medical care undergoing radical revision, fielding a life-saving drug at a price that is demonstrably not cost effective is a strategy clearly in need of review.

Severely stretched national budgets and the reluctance of insurance companies routinely to cover Jakafi suggests some adjustment is in order.  Pricing based on what the market will bear is never a moral choice for a life-and-death drug but in this case has become an unacceptable economic and social choice as well.

Reducing the price of Jakafi to cost-effective levels is simply the right thing to do. Incyte took the risks and is entitled to the rewards. But Jakafi is not the product of a single team in a single company but includes, independent MF and genomic researchers, taxpayers funding the Human Genome Project, and mostly MF patients, some of whom are frozen out of the benefits of Jakafi by its price.

We urge you as a physician and CEO to consider an immediate and significant reduction in the price of Jakafi to cost-effective levels.

Respectfully,

For MPN patients, caregivers, and healthcare providers

 *(Note to patients/caregivers/healthcare providers: Scroll to very bottom to add your name and location as signature — or your extended remarks — in the COMMENT box right below the yellow LEAVE  A REPLY ribbon.)

** (Correction: original had tyrosine kinase inhibitor) 

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Comments on: "An Open Letter to Paul Friedman, MD and CEO, Incyte" (216)

  1. Joan Fincher said:

    My son Clif Fincher, passed away April 27, 20015 after the long struggle with Mylofibrosis.
    It seems to me we went through the very same requests for Jakafi pricing changes when his
    need was great. It is a CRIME ! A response by the manufacture was they needed to pay
    back their investors…..!

  2. Muhammad Masood said:

    I m recently diagnosed with PV , & Prescribed with Jakavi. I saw the prices and even being a prof. engineer , this is not affordable to me. I think & request that JAKAVI should be available to everyone,who needs it, at a low cost.

  3. Lindy Sutton said:

    It is so sad to me that greed exits in the realm of necessary life saving drugs Please end this extreme cost to ill patients who struggle getting through a day let alone wonder how they can ever afford life saving medications.

    Lindy Sutton.
    California

  4. Mariann mahoney said:

    The cost of jakafi is unconscionable. With more people having to take the drug costs MUST come down. Greed is a one way ticket to hell

  5. Please, my mom needs it but it is too expensive

    • I can understand your concern but don’t panic. Her hematologist should be able to put her or you in touch with organizations devoted to help us through the financial challenges of getting these expensive meds. The first step is to get in touch with Incyte Cares.https://www.incytecares.com/ Their whole purpose in life to to get patients on to Jakafi. They are well staffed and experienced. There’s also MPNsupport.com, a patient based support site run by Marina Sampanes Peed. There’s a link there yo help with insurance, co-pays etc. https://mpnsupport.com/financial-insurance-co-pay-assistance-for-cancer-patients//

      If you need further help, please let us know.

      Good luck,

      Zhen

  6. CHRISTY SWANSON said:

    My husband’s quality of life has been greatly improved since taking Jakafi. If the cost of this medicine is increased he will have to stop taking it and will again be in pain and bedridden.

  7. We never know when a family loved one or friend will get this disease. Also, as human beings we should have compassion for each other and forget the almighty dollar. We need to do the right thing instead of worrying about the corporate profits. God help us if we don’t.

  8. As human beings, we should all have the right to have a good quality life and have compassion for our other brothers and sisters . Please make Jafaki more affordable. God bless.

  9. Denise Chambers said:

    In total agreement with this letter.

  10. Marty Jones MF sufferer on Jakafi said:

    When I retire in January 2014 I will no longer be able to afford Jakafi. Please consider ten needs of myself and other MF patients.
    Thank you.

  11. Sarie.Jenkins said:

    I agree with the letter

  12. I beg you to keep this drug affordable. Imagine if one of your own children needed it? It may not be curative, but for now, it’s our best shot at a normal life. For the love of life, don’t put dollars before your heart!

  13. Joanne Gaines said:

    Please may all concerned work together on providing vital medications available to all who need them.

  14. Charlie Nielsen said:

    I just was informed by my pharmacy that my refill was refused by the insurance because the price just increased to more than $10,000 for a one month supply. It was $7500.

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