Amount of time needed for first doxil infusion? and "thoughts" about my insurance company

Kgirl · March 2010

Hi all,

Had an allergic reaction to carbo, so am going on to a new chemo. I had already planned an out-of-town trip with my daughter, but need to fit this 1st chemo in somehow. I'm sure that one of you experts knows how long this will take.

I also just found how awful of an insurance company I have! I was wanting to start oral cytoxin and Avastin, but the insurance company denied it on the grounds it was "experimental". Evidently (at least according to the representative I talked to today), anything that is not FDA approved is grounds for denial. My hospital is "self-insured" and is only covered under Federal regs, not state. I did talk to someone in the state dept that regulates insurance in Oregon. She suggested that I call the Dept of Labor in Seattle which oversees "self-insuring" entities. I will try that tommorrow but I suspect that they can not do much for me. I did complain to the HR person in charge of benefits but that did not sound promising either. I guess when I'm down to no options thats when I call the CEO and start picketing the hospital and call the newspaper and TV stations. I'm not going down without a fight. I'm also going to talk to one of the staff members in the lab, as she is on some sort of insurance committee. Do I sound mad and upset enough to you? I guess I just got a dose of what some of you go through constantly.

Kathy

azgrandma · March 2010

So sad
I am sorry to hear this

BonnieR · March 2010

compassionate use
Hi Kathy, don't give up on trying this combo, as compassionate use is out there for you. I have had 3 different drugs through compassionate use. I am surprised that this is still considered experimental as I was told Medicare now covers it and they are the worst. I would appeal the decision to your insurance company and then if still denied have the people that do the finance part for medical team help you get compassionate use, or call acs to get help.

Hugs ♥ Prayers Bonnie

PS Doxil worked for me and even gave me a chemo break, but the avastin/cytoxan worked too.

nancy591 · March 2010

UGH!
So sorry you have to go through this. It really stinks. Complaining to the HR person probably won't solve anything. SHe is the HR person and doesn't write the policy. Picket, protest, do what you have to do! Sheesh, dont' they realize your life is on the line?

Do you have a major cancer center in your area? Maybe you can get into a clinical trial with avastin. My oncologist told me there is good results with avastin. Avastin results will be a topic at the upcoming gyn cancer convention.

Oh, the Doxil, takes about an hour or so to infuse. No counting any premeds.

GOOD LUCK!!!!!!

NCEllen · March 2010

BonnieR said:
compassionate use
Hi Kathy, don't give up on trying this combo, as compassionate use is out there for you. I have had 3 different drugs through compassionate use. I am surprised that this is still considered experimental as I was told Medicare now covers it and they are the worst. I would appeal the decision to your insurance company and then if still denied have the people that do the finance part for medical team help you get compassionate use, or call acs to get help.

Hugs ♥ Prayers Bonnie

PS Doxil worked for me and even gave me a chemo break, but the avastin/cytoxan worked too.

Appeal!
Hi - Ins. can make you jump through hoops that don't even exist..I worked for several big name companies and know a few loop holes to try: First make sure you have a copy of your whole heatlh benefit booklet that describes ALL of your benefits and exclusions, not just a summary of benefits. Sometimes these are called the Employee Benefit Booklet and your HR should be able to give you a copy- it's usually a pretty big booklet. For experimental drugs, it's true that most are denied, but if the drug in question is at least in a phase III clinical trial- it may be covered, that is why you need the 'big' benefit book to read the fine print.

Also, most self insured companies write thier own 'contracts' with the insurane company that insures the employees and can have quite a pull when a service is denied. The ins. company may make an exception if the big boss of the company gets involved.

If offered, go through both appeal levels (I and II), then contact the CEO of your company to see if they will help you with a 'carve out' to cover the drug. If all that fails, go straight to the insurance board of the state. Most ins. companies do not like the state regulators messing around in thier business. You still have time before the 'new' govt. regs take effect. Good luck and prayers to you, Ellen

Kgirl · March 2010

Good news!
I talked today to my insurance company about getting a copy of the physician review and determination for the denial of my chemotherapy. The rep looked and looked and couldn't find any denial. She even made a few phone calls to find out what was going on. She suggested I talk to the nurse care manager for my case. I e-mailed her, and to my great surprise, she said the chemo had been approved. The faxed approval that went to the oncology office only included avastin because the oral cytoxan was considered a pharmacy benefit. The case manager immediately called my oncology office and set the record straight. I have really learned that you have to be careful who you talk to at the insurance company. Yesterday another rep said they don't cover any regimen that is not FDA approved. The nurse manager said that is not entirely true - there is also the concept of "standard of care".

So I start cytoxan and avastin on Monday -Yipee!

I also want to thank everyone for their support and their excellent advice in dealing with insurance companies. I'm printing it out for the day I do need this info. I'm also very glad that I wasn't rude to anyone or else I would be eating humble pie right now!

Kathy

msfanciful · March 2010

Kgirl said:
Good news!
I talked today to my insurance company about getting a copy of the physician review and determination for the denial of my chemotherapy. The rep looked and looked and couldn't find any denial. She even made a few phone calls to find out what was going on. She suggested I talk to the nurse care manager for my case. I e-mailed her, and to my great surprise, she said the chemo had been approved. The faxed approval that went to the oncology office only included avastin because the oral cytoxan was considered a pharmacy benefit. The case manager immediately called my oncology office and set the record straight. I have really learned that you have to be careful who you talk to at the insurance company. Yesterday another rep said they don't cover any regimen that is not FDA approved. The nurse manager said that is not entirely true - there is also the concept of "standard of care".

So I start cytoxan and avastin on Monday -Yipee!

I also want to thank everyone for their support and their excellent advice in dealing with insurance companies. I'm printing it out for the day I do need this info. I'm also very glad that I wasn't rude to anyone or else I would be eating humble pie right now!

Kathy

Yes, Yes,
This is great new
Yes, Yes,

This is great new Kathy.

I was about to say also that having been on Doxil, I knew it was not experimental.

So it sounds like everything is looking up and working out for you.

Seems like these companies would think of us having fight for our lives let alone fight them too.

I'm happy for you and this is good news to end the day.

Take care,

Sharon

Hissy_Fitz · March 2010

Kgirl said:
Good news!
I talked today to my insurance company about getting a copy of the physician review and determination for the denial of my chemotherapy. The rep looked and looked and couldn't find any denial. She even made a few phone calls to find out what was going on. She suggested I talk to the nurse care manager for my case. I e-mailed her, and to my great surprise, she said the chemo had been approved. The faxed approval that went to the oncology office only included avastin because the oral cytoxan was considered a pharmacy benefit. The case manager immediately called my oncology office and set the record straight. I have really learned that you have to be careful who you talk to at the insurance company. Yesterday another rep said they don't cover any regimen that is not FDA approved. The nurse manager said that is not entirely true - there is also the concept of "standard of care".

So I start cytoxan and avastin on Monday -Yipee!

I also want to thank everyone for their support and their excellent advice in dealing with insurance companies. I'm printing it out for the day I do need this info. I'm also very glad that I wasn't rude to anyone or else I would be eating humble pie right now!

Kathy

Late last night...
It occurred to me that they might have turned it down as a "pharmacy benefit". I had similar issues with IV Boniva. I could not take the pills, so my physician prescribed IV Boniva, administered once every six months, and obviously administered in the doctor's office (since I'm not an experienced, mainlining junkie and lack the necessary paraphernalia, and unlike Michael Jackson, I cannot afford a personal, 24 hour on-call physician to come live in my house and hook up an IV drip in the comfort of my bedroom). My insurance company wanted to charge me a $400 co-pay and have me pick it up at the pharmacy, as opposed to just making an appointment with the doctor (or his PA) and having the infusion done there, where I would pay only my regular, per office call co-pay.

Don't get me started on insurance companies. They are the Devil's minions. And only hire people who are dumber than a box of rocks.

Carlene

Amount of time needed for first doxil infusion? and "thoughts" about my insurance company

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