Newbee-Father just diagnosed with MDS

[davidws]

Hello Everyone

My father was just (about three months ago) diagnosed with MDS and since I’m new to the site so I wanted to say hi to everyone. The doctor says he has had it for a couple of years.

The problem we are having is MediCare does not want to pay for the doctor prescribed treatment of Thalomid that cost 7000 dollars a month. Now the the doctor is trying to get a less effective drug approved that will cost 9000 dollars a month. MY dad has paid taxes since he was a kid and into MediCare all his life and now they (MC) are refusing doctor recommended treatment that has proven effective.They are giving him the run around and in the mean time he is getting worse. It is like they are saying to themselves,”If we wait long enough he will die and we will be able to keep all the money that he has put in all his life and keep it for ourselves.”

Help! How can I get the treatment my father needs?

David

[Neil]

Hi David,
A possible solution.
Medicare Part B will pay the Medicare approved amount for drugs that are administered in a docs office/clinic. If a patient has a supplement, it will pay the rest less any deductibles and or copays.
If the drug is a pill that is taken at home Medicare Part D will pay IF the drug is on the formularly of his part D carrier. The amount paid varies depending upon the coverage the patient selected. The currently FDA approved drugs for MDS are Revlimid, Vidaza and Dacogen. They are not on any formulary I am familiar with.
At the moment Medicare will cover Procrit, Epogen, Aranesp, Neupogen and Neulasta. The FDA black boxed Procrit, Epogen and Aranesp as the result of an obscure, flawed study done on cancer patients who had chemo and were overdosed with erythropoietin. The future for these drugs is still up in the air. Should have a decision before the end of 2007.
His docs office should have someone on staff that can address Medicare and supplement coverage. Suggest you ask his doc if you can speak to that person. If they decline ask you dad to approve you to recieve confidential info pertaining to his condition. Privacy laws tend to get in the way at times, but there are ways around them.

[chuckk333]

David,

It is sometimes helpful to people on the forum if you tell your dad’s age and diagnosis. you can do this in the “My profile” at the top of the window. Note the profile shown below on my replay and Neil’s

Chuck

[lynette]

Hi David,
My Mother was on Revlimid for a few cycles last year. She only had Medicare, parts B and D. Since Revlimid is FDA approved, and “on the market”, it would not be given in the Oncologist’s office. Medicare D would pay only after she met an initial deductible. the cost would be decreased considerably, but still expensive to a Senior on a fixed income. The Oncologist’s office manager was in contact with the manufacturer of Revlimid. They dealt directly w/ medicare.
Good luck, it took my Mother over 3 weeks between the time the drug was ordered to the time she took her first pill! It was very frustrating!
Lynette

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