Science & Medicine

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" (219)

  1. dolores reed said:

    Unless you have Myelofibrosis, or know someone that does. You can’t imagine how vital this medication is to so many…It restores a quality of life that they would not have …For once but aside a huge financial gain, do the right thing in having this medication affordable for all…

  2. Andrea Wernsing said:

    Please decrease the cost of Jakafi. I am currently on it and may no longer be able to because of the price increase. Dealing with cancer already stinks and makes a person’s life miserable. With the aid of Jakafi, at least symptoms are minimized.

  3. Judy Cousineau said:

    I have been on Jakafi for a year and it has given me a life that I did not think I would have.Going from the fear of the unknown to almost normal life which I attribute to Jakafi.I sincerely hope that you can bring the price down to give all MF sufferers a chance at a pain free life,without driving us into a pain free life. Deep thanks for your reconsideration .

  4. Alison Caldwell said:

    Considerable Profit before people????

  5. Lyn Arundel said:

    I live in the U.K and have been refused Jakafi on grounds of cost.It is so wrong that lives can be lost or adversely affected because of the greed of pharmaceutical companies in chasing large profits before considering human life.

  6. Tammy Kowalski said:

    These life saving medicines need to be made affordable to patients!

  7. Maryanne Reuss Lipken said:

    I agree. From Stockton, California.

  8. Marion Gallau said:

    Agree!!

  9. erintelford said:

    I applaude the neutral tone and the restraint shown in this email. I am a niece to my dear aunt who desperately need this medication to make her quality of life more bearable. It is appalling to me that in spite of huge profits, Jackafi continues to be priced at double the average annual salary of a U.S. citizen. It’s both greedy and cruel to dangle a solution in front of a very ill person that they can never afford. Who wins here? Very few. Dropping the price would make this drug available to the many who need which should keep profits level. That is assuming that this is all about the money since it certainly doesn’t feel like this has anything to do with patient care. Please consider lowering the cost of Jackafi so more of our loved ones can receive this valuable lifeline.

  10. Sheree Cross said:

    I am fortunate that my insurance pays for Jakifi. I’m also grateful to Incyte for paying half of my $50.oo copay. However, my private insurance just increased my monthly payments and sent me a letter asking me if I want to opt out, with a new carrier because of Obama Care. I’m sure they would love for me to opt out, with the high cost of Jakifi and SCT possibly in the near future. I’m scared to DEATH! Please find it in your heart to bring down the price.

  11. Lara Chapman said:

    Congratulations on producing Jakafi. Please adjust your pricing, so that those patients who it was made for, can access it. You deserve financial reward. However, healthcare should be about caring for the health of patients.

  12. The ability to live should not relate to ones’ financial status. Feel good about yourself and your company and give life through supporting/approving JAKAFFI for MF sufferers! Even if you means test the cost ~ those who have money will surely pay to live!

  13. Jamie Strause said:

    Dear Dr Friedman:

    I commented earlier but feel compelled to comment again. I have been a practicing Nurse Practitioner for decades. I first worked in a university hospital and coordinated many clinical trials. I now work in a Private Neurology Practice. Of course, our office is visited frequently by pharmaceutical representatives, so I am all too familiar with the pharmaceutical industry.

    As I was working today, I was reminded of a “good” example of a patient assistance program. Multiple Sclerosis patients benefit from a specific drug that is very expensive. Biogen Idec has a patient assistance program that makes the drug affordable for EVERYONE.

    Here is an example of their program:

    •Offering co-pay assistance for eligible patients, so you pay $10 a month, regardless of income*
    •Providing therapy free of charge with no time limit to those who are truly in need
    •Working with your insurance company to help you find the most affordable way to receive treatment, including helping with prior authorizations and denied claims
    •Helping you find coverage if you need it, such as Medigap, COBRA, and Medicaid
    •Guiding you to take advantage of the new benefits of healthcare reform laws
    •Finding assistance with premiums, copays, and other needs

    •Researching your insurance coverage
    •Coordinating coverage for TYSABRI with your insurance company
    •Helping you with insurance prior-authorization requirements, as well as information and assistance regarding denied claims
    •Providing options for additional insurance coverage

    Maybe you and Incyte can learn from this example of a beneficial patient assistance program. These patients PAY ONLY 10 DOLLARS A MONTH, REGARDLESS OF THEIR INCOME.

    I would implore you to become an example in your industry.

    Goodwill and fair play has its own immeasurable rewards.

  14. Cyndy Morreale, Denver, Colorado said:

    Dr Friedman,

    My husband was only able to be on Jakafi three weeks before he passed in 2011 as it had just hit the market. Thankfully, were able to get the drug through your assistance program, at a significant savings, however he was too far along for any benefit. Unfortunate timing in his disease … Your trials were too far along for him to participate earlier and later, his symtoms were. Even though we were unable to benefit from Jakafi in time, many others are living quality lives that your wonderful drug is responsible for.

    Thank you for the research that made this possible and any efforts to make the drug affordable for those who desparately need it. Almost noone can afford $84,000 for a prescription and to serve the patient is why the drug was created in the first place. T

  15. Laree Williams treece said:

    Please help

  16. Bill Erickson said:

    I was on Jakafi for 3 months be for my transplant. My insurance God bless pick up the full cost of Jakafi!!!! I found out that I was the exception not the norm. Please make it affordable for every body!!!!

  17. Dianne St Clair said:

    I believe every company is entitled to a profit but the cost are ridiculous.

  18. I have MF and have participated in a clinical trial. I’m also a believer in the free market. I agree with the open letter’s statement that those who take huge risks are entitled to huge profits. I recognize that you’ve likely spent huge sums on failed efforts and when finally you “hit” with a big win, you’re entitled to make a profit not only on money invested in the current “winning” drug, but also to make up for all the money invested in efforts that failed. So, I don’t begrudge your company making large profits. You’re entitled to them, but I also believe that there should be a balance. You’re entitled to a profit; those suffering from the ravages of MF and who can or might be benefited from your drug, literally deserve a life. I can’t believe that you’d be comfortable knowing that you have the keys to reducing suffering for so many, but would refuse a program that would allow those who truly can’t afford it, to continue to suffer. Please make your marvelous medication broadly available by making it affordable for those who truly cannot afford it.

    Thank you for your wonderful work. Thank you for your compassion.

  19. I agree with this letter. The exceptionally high cost of Jakafi makes this drug unavailable to so many people.

  20. Sallie Boiteux-Buchanan said:

    Surely the Hippocratic Oath is relevant here ? Reducing the price need not mean no profit for a company who have invested in this medicine. The price is quite simply too much for those of us dependent on the NHS, and possibly insurance companies.

  21. Barry Baker said:

    Understanding that you need to be reimbursed for your research and development, please consider taking less profit on this very useful drug for the sake of those who it helps.

  22. Tina Cooper said:

    Please lower cost, so the average Joe can have a life!

  23. Maryellen Moorehead said:

    What good is a drug that so many cannot afford? Please reduce the cost of this drug that increases quality of life simply because It is the right thing to do!
    Maryellen Moorehead

  24. AMY GULLIA-DEGREGORIO said:

    New to Jakafi, makes me feel almost normal.

  25. Jill Goodwin said:

    I am one of the fortunate ones who took a chance on Jakafi and won, My myelofibrosis is “on hold” for as long as Incyte chooses to keep me in the long-term study. But I live in very real fear that the study will end and I will return to a “waiting-to-die” status. My husband is a Medicaid patient who is a nursing home resident. As a result I live on a strictly limited income. Even with help from Medicare Part D (If Jakafi is on the formulary, of course) I will not be able to afford to take this life-restoring medication.

  26. Linda Baker said:

    Linda Baker: Please consider the needy patients that cannot afford such a wonderful blessing.

  27. Nancy Meyers said:

    Please consider this issue. Thanks to the doctors and patients who started this letter.

  28. sam cricht said:

    It is unconscionable that jakafi drugs are priced so outrageously high. I am yet another MF patient who has participated in multiple clinical trials and with the exception of the drugs themselves, incurred the cost of participating in these trials including flights, hotels, food, lab tests etc. I understand the need for pharmaceutical companies to make a profit but profits should not come at the expense of peoples lives. Be reasonable, be ethical, be human and lower the price.

  29. Yolande and Donald Farris said:

    Cancer fighting drugs should be available to all patients. My husband and I agree with the letter.

  30. Christine Heather Clinch said:

    I have MF. I was diagnosed eight years ago. At the moment I am at an expectable level. I don’t know for how much longer. Any drug that will help mf patients should be available on the National Health. Why should some cancer patients get treated and some not? We all pay our taxes and national insurance. Any drug that could improve the quality of life should be available to all patients.

  31. Joyce Brown, Antelope CA said:

    Please help reduce the cost.

  32. David G. Dickover said:

    Your consideration to adjust pricing for Jakafi would help many of us. As a patient I have had great results with Jakafi and feel the best I have in over five years.

    Thank you for your companies’ contribution to my inproved life.

  33. Ron Russell said:

    I participated for over a year in a clinical study for a drug that recently was approved by the FDA and is now on market. The irony is that although I was one of the first participants in the study I cannot afford to purchase the drug, which greatly relieved my symptoms for 17 months. Now that I am off the drug the disease has progressed and I am doing worse than every, yet there is no hope of purchasing the drug, which is priced absurdly. Illness for profit is a loathsome policy for healthcare.

  34. Andrea Wernsing said:

    Jakafi has helped me to live a better quality of life by alleviating many of my MF symptoms. Currently, I have a grant and insurance to cover the drug cost until the end of the year. After that point, I will hopefully find another grant to help with the payment. If I do not find a grant, I will be unable to continue Jakafi. I never want to live a life like prior to Jakafi ever again! Please, make Jakafi a reasonable price so all MF patients will not suffer anymore. Allow them to live the few years they do have left without being in constant misery.

  35. I agree with this letter. Fortunately insurance is helping with my cost for Jakafi. I cannot imagine being one of those patients who needs this drug and is unable to get it to improve their quality and perhaps length of life!!! Please be one of the few companies in this nation that really considers the patient and the good that can be done, rather than the “almighty dollar”!!

  36. Nancy morabito said:

    Jakafi has made a hudge difference in my quality of life, and i am fortunate to have a great insurance co. So please give others the opportunity to change thrir quality of life as well,by reducing its cost. Thank you

  37. Viktoriya Protas said:

    I agree with the letter

  38. My MF has accelerated over recent months and I now have a massively enlarged spleen. It is severely impacting on my day-to-day existence. I live in The Republic of Ireland, where there have been some trials of Jakafi with Panobinosdat. One was conducted at my local hospital in GAlway. My only hope of improved quality of life, is Jakafi. The drug, as it is currently priced, distributed here by Novartis, is way outside the reach of the health board on which I’m dependent as a retired person of limited income.
    Please consider making this drug more universally available by marketing it at an affordable price. DH

  39. George Baber said:

    Unfortunately, the high cost of Jakafi to the consumer forces too many into the untenable choice of symptomatic relief versus food, housing costs, or some other necessities. Not good or pleasant alternatives for our family members and friends.

  40. I shudder to anticipate an inability to afford this medicine if/when my MPN moves to another stage.

  41. Fritz Messere said:

    I concur with the letter. It is certainly appropriate for you to make a substantive profit on your research and work, but patients must be able to afford the medication they need. MF is not a disease with many treatment options. Your work here will likely spawn future discoveries. This research can be seen as an investment in future opportunities.

  42. Karen Rinaldi said:

    Please lower the price of this drug so that it can reach more people in need. It has been incredible for me and I want more to appreciate it!

  43. I am currently on Jakafi. Each month my insurances balk at the cost. Without my insurance, I would never be able to afford this drug. After 2 short months on Jakafi, I feel better than I have in years. Please consider lowering the price so we can all have a shot of quality of life.

  44. Ken Telford said:

    My sister is suffering from MF and is on a fixed income which prevents her from accessing this ridiculously costly drug. I understand the cost of bringing a drug to market but please show some compassion and make this drug available at a reasonable cost so those who are suffering can have a quality of life which you as the manufacturer know is possible.

  45. Please make this drug affordable so those who need it may receive it.
    Thank you.

  46. Janna Moss, Texas said:

    I believe MPN medicines should be available to everyone, worldwide, at a low cost. Money should no be a priority over lives!

  47. Sharon Telford said:

    Patients quality of life should not be held hostage by exorbitant costs of medications. We are all aware of the costs of bringing a drug to market but why develop a drug that is out of reach for the majority. It is time that drug companies consider the well being of patients and not just profits. PLEASE make Jakafi affordable to all those who need it.

  48. Giselle Garcia said:

    All pacientes in all countries should be able to receive the beat treatment possible because MF is a very grave and cruel disease that disable the person in all the aspects of his life.

  49. Barbara Renzi said:

    All drugs should be available to those that need them!

  50. Jeanie Fuelberg said:

    I concur with the letter.

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