International MPN News, Science & Opinion

Trouble getting Jakafi?

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Jakafi cost too much?

It might not be an issue for you right now, but do please pass it along if you know someone working through the problem.

As part of a petition drive to help bring Jakafi prices down to cost-effective levels, we’re collecting stories of patients who were unable to get prescribed Jakafi due to insurance or other issues.  If you were turned down or otherwise denied Jakafi please contact me: zhenyasenyak@gmail.com

100+ hematologists are in this with us. Together we can do something about it.

   Thanks,

   Zhen

Comments on: "Trouble getting Jakafi?" (11)

  1. Kathy L Board said:

    Yes Zhenya I too am having difficulty in getting Jakafi.. I am in moderate phase 2 of Myelofibrosis. .I was DX in Jan 2016.My Hematologist recommended I be place on Jakafi 5 mg twice a day.Took 2 months for me to recieve the med. I was denied by my insurance saying lacked enough evidence that I had the diease. Really ?? Moderate phase 2..The same insurance company has already approved me for BMT. Finally after appeal. I recieved the Medication. 2 Months supply.My oncologist did not believe my spleen was shrinking enough to his liking.He changed the doseage from 5 mg twice aday to 10 mg twice a day..Now once again I am having problems getting the Jakafi. They will not give me the 5 mg.(because of the new script.)And I have yet to get the 10mg. Has to go thru the pre approveal process all over again!! Here is the scary frustrated part..I ran out 2 days ago !! Waiting on all this red tape..I do not believe this is a medication you can just take at your leisure !! My oncologist office gave me 18 more samples to get me through till hopefully it works out. This is crazy..I can only hope they have to walk in my shoes just 2 days. Only then will they understand the fear anxiety frustation angry stress they cause to already very ill patient!! Should never ever be this difficult !!! Thank you..

  2. Joyce A. Brown said:

    Joyce A. Brown
    Antelope,CA 95843

  3. Richard T. Silver, MD said:

    Z. I have such a patient. Call my. Nurse Ruth at212 746 4682 best RTS

    Sent from my iPhone

    • Thank you Dr. Silver. Got the message too late to reach Ruth but I left word. There is a hot line number at Incyte to get help: 1-855.4-jakafi
      If your patient cannot get prescribed Jakafi please have him or her contact me tomorrow morning or have the details (without ID) sent to me. I will take it up with Incyte.

  4. Ginger Shirley said:

    Hi Zhen,

    I am very fortunate my insurance is paying for my Jakafi at this time. I called the lab when the price was increased by 10% and complained. The cost was already extremely expensive.  I was unable to reach anybody connected with pricing. I have concerns about the taxpayers cost for me at my age but when I think of going back to my quality of life before this medication it is hard to become a hero. There has to be a less expensive price in the near future or it will be dropped by all insurance plans eventually and most including myself will lose the advantages it offers. When I look at what my Doctors receive for compensation for my care and compare it to the cost of the medication it is hard to make sense out of pricing in today’s world.

    Virginia Shirley

    ________________________________

    • Virginia, the pricing of Jakafi is separate from your need to access the medicine. And separate from the pain this pricing inflict on our medical care system. While the impact of the high cost-ineffective price means insurance companies deny coverage or make us jump through hurdles, we and our physicians need to focus on getting us the meds we need. Incyte itself has an impressive program run by people determined to make Jakafi available to all who need it regardless of means. If you have any difficulties getting Jakafi head to http://www.jakafi.com/consumer/incytecares and let them know. And if you can’t succeed after that please get in touch with me and I’ll personally call everyone I know at the company to find out why and get back to you. Good luck.

  5. Bonnie Kaye Evans said:

    Joe and I are for the petition to get the costs down. Everyone should have access to it.

    Bonnie Evans Traveling along roads least traveled Sent from my iPhone

  6. DAVID MACDONALD said:

    Dear Zhenya,   I am from Toronto, Ontario,  Canada. I have had MF for three years and have at least three risk factors.   My spleen is about 23 cm. long is is now causing me pain .. it is now time for me to receive medication to reduce my spleen size. Some private insurance companies in Ontario cover Ruxolitinib ( I have talked to fellow patients) but unfortunately my insurance company with my wife’s employer, Green Shield does not cover Ruxolitinib nor does the government of Ontario. Therefore it will be extremely difficult for me to access this drug as of now.  When you think of it , Myelofibrosis is such a rare illness and in  Ontario occurs very infrequently,  my guess is that Greenshield Ins. would have to cover  hardly any patients. ( the other few patients will be spread out over the Insurance companies that cover it… so even though an expensive drug not a big outlay of money for the drug companies for Ruxolitinib.   thanks for your support,  David J. Macdonald

    ________________________________

    • Has your physicians weighed in on this, David? how about appealing the denial of coverage, accompanied by a strongly worded letter from your doctor? We have published strong supporting documentation of Jakafi’s efficacy you’re welcome to include. And do go to http://www.jakafi.com/consumer/incytecares to see if you can get some help. If neither public or private insurance covers you and Incyte doesn’t find a means to provide Jakafi to you, please let me know: zhenyasenyak@gmail.com. Good luck!

  7. Ann Zielinski said:

    Let’s worry about getting Pegasys. I can get it but only if I stay in the state in which I currently reside. If I move out of state at retirement the one plan open to me does not cover it unless I “fail” HU. Would like the Hematologists to work on getting Pegasys into the compendium so insurance companies will start to consider it. I don’t want to have to make an appeal yearly.

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