Part D Prescription Coverage for Tykerb?

I have been on Tykerb for nearly 3 years and have been fortunate enough to pay just a $15 co-pay each month. Because I've been on SSDI for two years on December 1st, I now have to have Medicare A & B instead of our private insurance that includes prescriptions. It seems that all the Part D prescription plans have the $4500 donut hole and even after I pay the $4500, it will cost me thousands more each year (notice how optimistic I am that I will be around for YEARS!) to pay for Tykerb. Does anyone else on Tykerb have a Part D plan? If so, are there any plans that make Tykerb affordable? Thanks.

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When we went on Medicare part D, we found that the Cytoxin we were copaying for on insurance was now covered under part B of Medicare, but it had to come from the special pharmacy the Medicare people set it up with. It came each month by UPS at no cost to us. See if your oncology office has a person skilled in the ways of Medicare and insurance, Our oncology office set it all up for us. Mike

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Thanks, Mike. I'll talk to the patient advocate at my oncology practice and will post what I learn.

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I am on Xeloda and Herceptin, not Tykerb. But, when I had to go on medicare, my zero copay for Xeloda went up to almost $400 every two weeks. I was on the phone with medicare and my supplemental Excellus plan. They simply told me that that was the copay..... PERIOD. They patronized me with, "I know how hard this might be for you to afford." I cried on the phone, and I cried at the pharmacy. I was told to start writing the pharmaceutical company for help. Honestly, when we feel at our worse we have to start begging for money to stay alive?????
I finally went to my old employer and talked to them and they put me on a different insurance policy that now covers the copay. But, I think all the time about everyone else out there who is still struggling with these outrageous copays.....and our only choices are to spend the limited time we have on this earth writing letters to ask for help, or simply to give up on life. I have seen others struggling like this. And they finally gave up. It was too much of a battle to fight every day when they were so very ill. And, they are no longer "with us". It is a shame that we are in this situation in THIS country.

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Hi KPretzel,
I am on Tykerb, Xeloda, Hercdeptin, and Zometa. Herceptin and Zometa are infused, so I think Part B will cover them. I have read that Xeloda is also part of Part B. Your message makes me think otherwise. I am going to check that out. My supplemental insurance is probably going to be Blue Cross Bronze. Don't know if they will pay the share of Xeloda that Part B doesn't pay. Sounds like I have a lot of work to do. I so agree with you that it seems like those of us with MBC who can no longer work have to use much of our limted energy to look for ways to pay for our treatment. I will pray for strength for all of us to keep going, to get the treatment we need. Thanks for your message.

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Kpretzel,

What is your current supplemental insurance carrier now?
Do they cover those additional costs, that Excellus wasnt covering?

I have been under the impression that what ever Medicare doesnt cover, then your supplemental coverage should pick up the un-paid balance? I obviously have much to learn about this. Can we just opt out of being on Medicare, and keep our private insurance policy? I like knowing that I have 100% coverage, and the last thing I want is two different coverage plans (medicare + supplement).

I would like to add that anyone who is financially straped, shouldnt ever have to give up treatments. If you are getting Chemo from a private practice, most likely they do not offer financial assistance. Who does then, the Hospitals, particulary the bigger ones. You can switch over to the hospital directly and get your Chemo treatments directly thru them, with Financial Assistance. I am not 100% certain on this, but believe this is how it works. I continually get notices from my hospital, reminders that if Im in hardship, to contact them. They state 'no one is ever denied treatment, no one is ever turned away'. I believe most hospitals have these policies available, you just have to seek these services out.

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FYI ladies. If you have a medicare supplemental plan, they have to pay the 20% of the medicare approved amount. If medicare approves it, they pay 80% and the supplemental plan pays 20%. (Medicare Part B) I know there are some chemo drugs that are taken orally that are covered under the medicare part D prescriptions plan, but some are covered under the medicare part B, like Xeloda. I would be great if all chemo drugs get shifted to Medicare Part B. That would benefit the most people.

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frannyv -
I agree with you that it would be so much simpler if all cancer drugs, whether technically "chemo" or some other type of cancer drug, such as hormone therapy or a biologic, were covered under Part B. I have spoken to the patient advocate at the oncology practice I go to. She said she will work with one of the insurance company prescription plans to help me with the $4500 donut I will hit after just one month of Tykerb once I lose my private health insurance. I don't know yet what form this aid will take. She told me to get through the holidays and that we will work on this in January. It's hard not to worry about it. My metastatic diagnosis was more than 4 years ago. I have been kept going with a reasonable quality of life in part because my soon-to-end private isurance has allowed me to get whatever diagnostic procedures and treatment I needed. The notion that my life ( or any of our lives) may be shortened because I (we) cannot afford effective treatment is frightening and sad.

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