Medicare says NO

BonnieR

Hi Everybody,

On Thursday when I saw the doc we thought we had a plan. He said he was pretty sure medicare would approve oxaliplatin and scheduled me for chemo this next Thursday. My platelets had come up to 83 and he said that was high enough. Anyway I got a call yesterday saying medicare will not approve it. I asked about an appeal and was told medicare will not approve any drug that is not FDA approved for ovarian cancer. I can only imagine how many people are in the same place as I am that are on medicare as primary insurance.

We are going to file for compassionate use from the drug company but sounds very unlikely we will get that either because our income is a little too high. Middle class doesn't get any help. Needless to say, I have cried alot, it is almost harder than being told you have 6months left, as there are treatments obtions out there but cost way too much to get and if I don't do them the cancer will spread and grow and I will get to the 6month deadline before I know it. The cost is over 12,000 per treatment and I don't want to run randy into the hole trying to see if they work. Lose the house, his wife and everything would not be good.

Anyway I have pulled all the documents together to see if we could qualify for compassionate use, if not I told the clinic to cancel treatment. Not sure what to do, maybe ask to try one of the drugs I have in the past to see if it would possibly work this time. Just think of all the people who are where I am at because of having medicare as their primary insurance.

Wish my update had better news in it. :-( The good news is my platelets are coming up, my hemoglobin is at 9, wbc at 2.8, rbc 2.6 so my counts are holding or coming up a little. They also gave me antibiotics for the crud I've had for 2 weeks, said it is now an infection in my bronchials and sinus so that should be leaving the body soon.

I am so glad I have this place to share my feelings, you have all been so supportive during this journey. Hugs ♥ Prayers Bonnie

floridajo

Bonnie
Well that just sucks...especially since it is needed for us. I too have medicare insurance with a Humana policy as well. I'm surprised that they don't cover this chemo...I didn't think the chemo you are asking for was a new drug or not approved. Hang in there..there are still many chemos out there. I'll keep you in prayer and hope those blood counts get alittle higher and that you can get the compassionate care from the manufacturer. (((hugz)))~~~Joanne

saundra

Hurray for the platelets!
Well, the blood sounds good and answered prayer. I will now focus on medicare in my prayers for you, Bonnie. But the whole government ruins every program they mess with. If we had total socialized medicine we would probable have to wait a long time before we could get on the list to try one that is not especially for ovarian. Who knows? Have you tried the anti estrogen route? I have no idea how that is going to work on me. The cancer center gave me samples for the first month so I don't know how much they cost either. If they are really for breast cancer, I guess medicare won't pay for them either.
One other question....since ovarian spreads to colon etc....if the chemo is approved for that, could you be rediagnosed with that? Worth a try... Phil. 4:6 Do not be anxious about anything, but in everything by prayer and petition, with thanksgiving present your request to God. (Hugs and Prayers)) Saundra

kayandok

Dearest Bonnie!
Dearest Bonnie,

Thank you for keeping us up to date and for your faithful support of everyone on this board. First, very good news on the blood coming back! But you don't deserve a NO! from medicare on the chemo. You are a fighter and I know there must be a way for you to get the chemo you need.

I don't know anything about the US system/or medicare (I live in Japan) but I do know that a couple things I needed in my treatment this last year, was not approved in Japan for OVCA and my doctor some how fudged the dx or paper work, or just ordered it for me. What cancer is your chemo approved for? Is it possible for your doc to change your dx or fudge some paper work? I am very naive to this process and you are a veteran so I'm sure you have already thought of all these angels. Just wanted to throw in my thoughts and support!!

Praying for calm and wisdom in the midst of this storm for you. You are a treasure to the OVCA sisterhood, and we need you here for another good long time!

God bless you and send a miracle your way soon,

Kathleen;)
in Japan

ladyjogger31

Bonnie
Hi Bonnie, glad to hear your platelets are up. I too have Medicare as my primary and Atena as my secondary.I'm crying just reading your post.It is horrible what they put us through.I'm so sorry that this has happened to you.I'm lifting you up in my prayers as I know everyone on this board will to.
Hugs and Prayers,
Terry

BonnieR

ladyjogger31 said:

Bonnie
Hi Bonnie, glad to hear your platelets are up. I too have Medicare as my primary and Atena as my secondary.I'm crying just reading your post.It is horrible what they put us through.I'm so sorry that this has happened to you.I'm lifting you up in my prayers as I know everyone on this board will to.
Hugs and Prayers,
Terry

thank you all
Goodmorning, thank you all for messages, but most of all the support. :-) I have all my paperwork together to file for compassionate use. I will fax it on Monday to the gal at the U and will know within 24 hours if we qualify or not. AND if we don't I have a list of drugs that NCCN lists for ovarian cancer. It has 2 boxes one says preferred agents and the second box says other potentially active agents. In the second box it lists Oxaliplatin and also lists etoposide. I know in the past when Medicare was my secondary insurance they would have paid towards the Etoposide so I would think they would pay towards oxaliplatin. Also my understanding was they were going to use the NCCN list for lists of drugs used for types of cancers. If I don't get approved for compassionate use I will explore this further. I am not ready to give up yet. HUGS N PRAYERS Bonnie

Getting my Ducks in a row and then we'll see what sinks and what swims. :-) Love Ya

kris43

BonnieR said:

thank you all
Goodmorning, thank you all for messages, but most of all the support. :-) I have all my paperwork together to file for compassionate use. I will fax it on Monday to the gal at the U and will know within 24 hours if we qualify or not. AND if we don't I have a list of drugs that NCCN lists for ovarian cancer. It has 2 boxes one says preferred agents and the second box says other potentially active agents. In the second box it lists Oxaliplatin and also lists etoposide. I know in the past when Medicare was my secondary insurance they would have paid towards the Etoposide so I would think they would pay towards oxaliplatin. Also my understanding was they were going to use the NCCN list for lists of drugs used for types of cancers. If I don't get approved for compassionate use I will explore this further. I am not ready to give up yet. HUGS N PRAYERS Bonnie

Getting my Ducks in a row and then we'll see what sinks and what swims. :-) Love Ya

Ever the warrior
You never cease to amaze Miss Bonnie.........really. You show me how to take the punches, cry a little bit and just plunge ahead on to what needs to be done.

My cousin Heidi had Multiple Myeloma and the drug that was not FDA approved when she lost her battle in September of 2006 is now the drug they use first in treatment. Heidi's cancer was too advanced by the end to even try the compassionate care route - but a woman at work was also diagnosed with MM about 2.5 years ago and she is considered to be close to remission even though she will take a chemo pill every day for the rest of her life to keep it that way. It just blows my mind.

You keep doing your investigating and if there is ANYTHING that we could do - like write letters of support or protest - let us know and we'll get started on that. It's ridiculous that insurance gets to basically say who gets treatment and who doesn't - especially after you've fought so hard and long to get to where you are - all the while remaining positive.

I'm sending hugs and keeping you close in my thoughts. Looking forward to hearing what you find out. Take care.

Kris

ColleenN

Bonnie
Hi Bonnie,

That's great news on your counts, hopefully they will continue to rise. That's rotten of Medicare though. You'd think with this disease a treatment would be a treatment, no matter what it is, if there is even a potential of it helping. They keep finding out that drugs to treat one thing help another all of the time. It's also just not fair to work hard and then have them say "you have too much for help". Cancer doesn't care who it picks. Why should insurance get to?

Take care and good luck. Your strength, concern and advice mean so much to all of us. {{{{{hugs}}}}}

Colleen