MDS is a bone marrow failure disorder
MDS is a blood cancer
Learn More >

Welcome to the MDS Patient Message Board Post New Thread

Welcome to the MDS Patient Message Board. We hope that you will find this to be a very valuable resource in your journey. We have recently revised the format of our forum to be much more user friendly and pleasing on the eyes. Let us know if you have any problems, or if you have additional suggestions on how we might further improve our site.

drugs not covered by insurance

Home Demo forums Patient Message Board drugs not covered by insurance

Viewing 6 posts - 1 through 6 (of 6 total)
  • Author
  • #53176

    I was diagnosed with MDS 6 years ago and have had very little change in my blood counts but I want to be prepared for the future. Now is the time to enroll in the Part D plans and I am finding most of the drugs suggested to treat are not covered. Example, Vidaza, azacytidine, Dacogen, Decitabine and Inqovi. Is this what generally happens or am I looking at the wrong plans. When I type the names of these drugs in the medicare site it does not recognize any of them. Thanks for any help you can give.

    Rita Knopick

    I believe that most of the mentioned drugs require prior authorization so they won’t list as approved. My husband was on Dacogen for almost 3 years and it was covered at 100%. When his MDS transitioned to AML he tried a new drug called Venclexta. This drug was very expensive but our insurance covered 80% and we received a grant for the remaining 20%. He also was on Medicare Part D. I hope this helps.


    If you are low risk, with ringed sideroblasts confirmed by biopsy, and are being considered for treatment with Reblozyl, Calgene has a Patient Support site. If you are less than 8 times the poverty level, they will probably approve you for free drug, so worth a submission – requires your doc requesting prior approval to treat you with it, and submission of all your finances.


    I would not be eligible for any help so I just hope it does not progress. Diagnosis is low risk with ringed siderblasts. Thanks to all that responded. I am surprised that when you type the drugs into the medicare site that it does not even recognize them.

    Dr. Lin

    If your physician believes that you will benefit from drug they will get it to you. Trust me, all oncologist offices are well prepared to help patients like you!

    Pat Lawson

    Azacytidine (Vidaza) & Decitibine (Dacogen) are given to you by IV or by shots in a Hospital or Outpatient/Infusion Center so it is covered under Medicare part A or B. Medicare part D is for prescription drugs that you would take at home so that is why you can’t find it there. The FDA has just recently approved oral Decitibine so you might have trouble getting that covered unless you doctor fights with them about it or the drug company has some kind of patient assist program. Hope this helps.

Viewing 6 posts - 1 through 6 (of 6 total)

Register for an account, or login to post to our message boards. Click here.

  • You must be logged in to reply to this topic.



Search Forums

Review answers to commonly asked questions or get answers to your questions from an MDS expert