Tell me what to say, please...

[Mary Anne in TX]

Hi all!
I am once again in the position to have to try to convince the insurance company to allow my herceptin treatments to continue. My doctor called them last time and they agreed to honor his request until June 28. But after that, they refuse.
When I saw my onc last week, he asked me to call them and work with them on extending my time due to the pathology report and our belief that it is the herceptin that has kept me from having mets so far.
I'm so afraid that I will say something crazy and mess up the whole thing. I don't want to get mad at them, but it's my life and I say crazy things when I'm mad or nervous.
Would surely appreciate any and all suggestions for approach and whys, etc. Bottom line....I need help.
ma

[Colleens_Husband]

Mary Anne:

If you realize that you have a tendency to get mad, emotional, over excited when dealing with the insurance dunderheads, then you may want to consider getting an advocate to speak on your behalf.

If you come off as being frantic then the person you need to convince about spending the insurance company's money is going to dismiss you as a head case.

You may consider hiring an attorney, someone who has worked in the medical insurance business, or a medical consultant to help you out. There will be a small fee involved, but if you get the Herceptin, then it will be one of the best investments you could possibly make.

There are some arguments which will have a positive affect on the insurance companies, and there are some arguments which will hurt your case. Sometimes a third party who isn't emotionally involved will be able to better tell the difference.

If you decide to speak for yourself, then you need to understand where the insurance company is coming from. They are a business and they are motivated by profit. They look at medical problems based on actuary predictions. As an example, if you don't get Herceptin, your chance of getting mets is X percent. X percent multiplied by the cost of care for treating stage IV cancer should cost more than the cost of the Herceptin or they will deny treatment. There isn't a whole lot of room for emotion in the mathematical formula, so your arguments are going to have to reflect the potential cost savings the insurance company is going to have if they give you the Herceptin.

Mary Anne, I hope I am not being negative here, I just want you to have the best outcome, and that outcome will require some homework on your part.

Please know that we are on your side and we will be praying for your success.

Lee

[Mary Anne in TX]

Lee, I knew that it would save them money in the long run to keep me NED than to pay for the meds I'd have to take if Stage IV, but I don't know the statistics, etc to argue with.
I don't lose my cool with them, I just don't represent myself well sometimes when I'm mad or being dismissed. The crazy things I would say or more solicitous (sp) to them and not representing my real views well.
Two of the nurses and two of the insurance girls at the clinic had tried to get them to ok continuing last time. They still said no until Dr. K called them and talked to the pres. of the co. The letter I got sounded very final. Dr. K says he will call again, but he wants me to call them also. I just don't want to make matters worse. I'm really good with people except when it benefits ME!
Thank you for your suggestions. They are great ones. ma

[Faith in Him]

Ma,

I'm sorry I don't have any experience or advise to give to you. I'm sure some of the great people here will come along to give suggestions.

I know this is a big issue and I will keep you in my prayers.

A big hug to you,
Tonya

[Mary Anne in TX]

Thank you Tonya, I'll take those prayers. I know in my heart that it will turn out just as it is supposed to do. I do have a peace about it. I just want to do my part. This seems like a turning point to me somehow. ma

[schoolteacher]

Mary Anne,

I will be praying for you. I am afraid I will be in the same situation after February when I finish my year of Herceptin.

God Bless You.

Amelia

[Lani]

I don't see a profile for you so we could know when you were diagnosed, whether you have inflammatory bc or regular her2+ bc, what stage you are, how many lymph nodes were positive, how long you have been on herceptin already, what you scans, tumor markers or serum her2 ECD results have been.

Insurance companies usually want your treatment to follow recommendations of national panels of oncologists or the "standard of care" agreed to by oncologists at national meetings and usage of the medication in question in line with the indications for which it met FDA approval.

If there are any treatments not given as part of a clinical trial and not meeting the usual "standard of care" they usuallly want a letter from your treating doctor as to why your case is different and they usually send it to a panel of doctors who may or may not be expert in the area and who don't know your particular case as well as you do. If you and your doctor can summarize your particulars and give good reasons why the continued treatment is "medically necessary" they may or may not agree, but it is worth a try.

If you are Stage IV I am happy to try to provide you with citations of articles as to why you should remain on herceptin indefinitely although NED, just adding other drugs to it.

Hope some of this helped.

[Sheila]

MaryAnn
I understand your frustration...I have lost the battle to get Abraxane rather than Taxol....I really don't think it is fair that the insurance companies and their expert panels who don't know us, decide out fate and treatment.....this is such an injustice.

[StephN]

Hi MA -
Not an enviable position - to have to argue for a drug that is FDA approved for your type of case.

What I have had to do in the past is prepare an outline.
Put in the key points you wish to make and stick to this "script" unless they throw you a curve ball, then repoprt that to your doc and let him handle that one.

This way you keep better focused and hopefully less emotional. Not always easy to separate, but if you organize your thoughts ahead and practice, that should help.

And just realize going in that these people on the other end of the line ALSO have a script and just ask to go up the ladder to get to the key people. Don't wast your time and energy talking to people who can't make decisions.

All best wishes for success on this one.

[karen z]

Mary Anne,
I don't understand why your doctor (or someone in his office) can not call for you- why you have to call first. I realize that your doc has called before but I believe that it is your doctor (or his rep) that can best speak to the necessity. I would not stop pushing the doctor on this.
karen z

[CLTann]

Using an attorney is a good idea. They often are better speakers and can organize their arguments eloquently.

If you decide to call youself, be sure to write the planned phone call down as a speech. Go over the text many times, not only for checking your essay but also to memorize it so that your presentation will be less emotional and more to the point. Be sure to cover all the points of argument, including the health outlook, monetary impact, family situation, doctor's viewpoint and the standard accepted treatment protocol.

Be calm. Do not allow their interruption. Tell the whole story without emotional outbreak.

Good luck.

[dhealey]

I had to threaten my insurance company with me getting a lawyer before they finally paid for my herceptin treatments. Also your doctor is the one who should call and request additional time as he prescribed

[ElaineM]

Hi,
How upsetting !! Can you find an avocate to help you?
Can your doc write a letter? Is there an organization that might be willing to sponsor you or part of your treatment? Is there a clinical trial for the drugs you need? Is it possible for you to pay for some of the drugs yourself or do you qualify for some kind of aid like Medicaid?
One additional idea------------sometimes drug companies give scholarships to patients. The information should be on the drug companies website or the website for the actual drugs you need. I think you might be able to find the actual applications or an address or phone number where you can get an application. I don't know if any of these ideas help, but
they might be worth checking into.

[Becky]

Dear Maryanne

I think the main point is to discuss with your onc all the points that make you different than other Stage 3 women. For example, I noticed that your chemo regimes are very different than most women receive (or received at that time (as things have changed dramatically over the last 3- 4 yrs)). The cancer center you go to has to help you with this. You (or someone you hire) has to formulate a plan and rationale on why the Herceptin is giving you the benefits you have (even if it was the chemo you got years ago).

Can your doctor give examples on how other women he has treated with "standard of care" are faring worse - even if they were staged less than you? They need to help you out here, especially if your onc really wants you to stay on Herceptin.

I was not in your shoes even though I also received more Herceptin (than one yr) but for some unknown reason, my insurance company gave me an open authorization for Herceptin for life (maybe poor doctor's writing where Stage II looked like Stage IV?) But certainly if your onc is really on your side, with your help, he could formulate this better than you.

I will be thinking about you and hope it comes together. You have about 6 weeks to get it through.

[Bill]

Ma, I've heard alot of good ideas here, in my opinion. I thought of the advocate idea, but I think it may be more effective if you speak for yourself, using the "outline". Try to speak with the person highest in the chain of command. Practice that phone call and anticipate questions with a close friend, so that you can prepare, that will help alleviate nervousness. As you speak to that person, try to make a personal connection. "where do you live, etc." Most of the time if you can make a personal connection with a person on the phone, it does make a difference. Try to get a chuckle or two out of them, if you can. Try to "intuit", or even ask them, whether or not they have children, grandchildren. At some point, when appropriate, ask them something like, (the exact wording is up to you MA, practice different scenarios until you feel comfortable) "If I were your daughter (Mother, sister, wife, granddaughter, etc.) what would you do?" I hope we have helped. Love ya! Bill

[Mary Anne in TX]

All the suggestions and ideas are so helpful. I agree that it would be better if the doctor did the requesting.
Becky, I think my treatment was different also. He asked me before we started if we could be very agressive with treatment and I agreed. I believed from the beginning that it would take a very agressive treatment to work.
Lani, I don't know why my signature isn't showing my diagnosis, treatment, etc for you. But I have had 2 years of herceptin and want to continue. My doctor, nurses, and I all believe that it is necessary for me.
Thanks so very much for your responses and well wishes. I don't want to mess this up because I didn't get help. I'll call the office and ask the person that helps me with this for advice and then decide what step to take next.
I love you guys, ma

[Mary Jo]

Hi Maryanne,

The first thing that came to my mind when you asked for advice was for you to speak from your heart. Let them feel your passion for your life.

Possibly I'm a bit naive, but my feeling was that when they hear your "heart" and your desire to live they will feel your passion and grant your request.

All that being said, my prayers go with you that all will work out for you. You know on top of all you have to go through, it just seems so unfair that battling insurance companies has to be something else you have to go through.

Love to you sweet sister...

Mary Jo

[sassy]

Mary Anne,

Who is your insurance company and what type of coverage do you have? Do you have an advocate at your cancer center?

I'm in the same boat as Becky, I received Herceptin for 18 months, until the breast cancer department of my oncology center determined that they would not continue treatment after 12 months for early stage, non-metistatic bc, based on current treatment recommendations. My insurance had no problem continuing treatment.

I also was IIIA, 5 of 14 positive nodes.

[hutchibk]

Maryanne, call the Texas Dept of Insurance, consumer affairs division, and get their address. After you call the insurance co., follow it up with a strong letter to them that reiterates all of your points. At the bottom of that letter indicate that you are cc:-ing the State Dept of Ins... and then send a copy of the same letter to the State. I promise you this will get their attention and you will get a letter from the state within a couple of weeks telling you that they will investigate your appeal. This is one pretty effective way to get the insurance company to listen to you. It worked for me the one time that I had a squabble with my ins co.

[Mary Anne in TX]

Sassy, thanks for your input. I think I am working to continue because I am E/P negitive and because the herceptin is working. With known vascular invasion, and 7 positive nodes, I think it makes sense. But who knows what is best. Sometimes I wake in the night and think about what it would be like to not ache and to have some energy back! I'm so driven by the fact that I have an 8 year old granddaughter to rear.
Brenda, your advise about writing the state will probably have an impact on them. I just have to gather up my fighting spirit and prepare for the fight!
When I think about the stress of all this, I realize that we don't know whether I'm fighting for what I need or what I think I need. But someday we will know!
I couldn't even think of taking on this fight without all of you! What a terrific family you are! ma

[Colleens_Husband]

I'm not sure how relevant this is, but I find it amusing so here it goes.

When I had Guillain-Barre' Syndrome (pronounced geeyun baray, it's important, really) I was receiving a medicine called IVIG which is just awfully expensive. After putting $25,000 dollars worth of IVIG into my veins, the insurance dunderheads phoned the doctor and asked them to stop IVIG treatments and use an alternate treatment called plasma pherises. Plasma pherises removes all blood plasma from your bady and replaces it with someone else's plasma. This would remove the $25,000 of IVIG that was already in my system and working superbly against the Guillain-Barre' Syndrome. The doctor phoned and tried to get the insurance ninny to change their mind and got nowhere.

I phoned the insurance company and started to talk to their "expert" on the subject. The person on the phone looked up my records and said, "I see you have Gillian Bar Syndrome'.

I asked, "Are you familiar with the syndrome?" And she answered, "I am the company expert on the syndrome."

I said "Now that is scary!"

"Why is that?" she asked?

"Because it's pronounced 'Geeyun Baray' you mountebank!"

(A short parenthetical note, I have no idea what a mountebank is, I saw it in a Tin Tin cartoon book and it sounded real bad and I'm not above using a little bit of bluster when it come to matters of my health. Get the medicine first and repent later.)

Anyways, after that, the insurance company just gave up and paid everything my doctors, physical therapists, or I asked of them.

So what does this mean? Well it could mean that the panel of experts could consist of the mountebank, a janitor, and an accountant named 'Bob' who works in the basement, uses a pocket protector, and hasn't had a date since 1982 when he asked his cousin to the prom.

You just need to convince one person to get the Herceptin.

Lee

[Mary Anne in TX]

Oh, Lee, I love that plan of action. If nothing else, it's so charming! I would have loved to see her shake in her chair! But I do get the message. They decide on something they know so little about!!! that goes well with Bill's notion of writing it down and being very detailed. More ammunition to add to my arsenal! I feel the fire burning brighter! Thanks, ma

[Bill]

Ma, you just keep gathering ammo. for the fight. You will get that Vitamin H! Forgot to mention earlier, some one said that sometimes the pharm. companies will provide meds. for free as a goodwill gesture and a PR thing. That's true. Nicola was denied Xeloda by our insurance company many times, so with the assistance of an awesome reasearch NP, we contacted Roche (I think) and while we were appealing the "turn-downs" by the ins. company, we submitted documents, phone-called, etc. and the pharm. company was going to provide the Xeloda to Nikki for free. It was awesome. The people we dealt with were wonderful. Then the insurance company finally approved the Xeloda (We'd been buying it out-of-pocket for Nikki at 120 bucks a day for almost a week-scary numbers) and when we contacted the pharm. co. they really, really wanted to make sure that the ins. co. was going to cover it, before they halted the "donation" process. Ma, maybe you can contact the comp. that makes herceptin and try to work a similar deal at the same time you are fighting your ins. company. Stay strong, Ma! We love ya!

[StephN]

"MOUNTEBANK" is the perfect word for this case!

Colleen's husband got it right!

From Wikipedia (keep reading - you will see how it all ties together):

For other uses, see Charlatan (disambiguation) (http://en.wikipedia.org/wiki/Charlatan_%28disambiguation%29).
"Mountebanks" redirects here. For the comic opera, see The Mountebanks (http://en.wikipedia.org/wiki/The_Mountebanks).
"Swindler" redirects here. For other uses, see Swindler (disambiguation) (http://en.wikipedia.org/wiki/Swindler_%28disambiguation%29).
http://upload.wikimedia.org/wikipedia/commons/thumb/b/b4/Wiktionary-logo-en.png/50px-Wiktionary-logo-en.png (http://en.wikipedia.org/wiki/Image:Wiktionary-logo-en.png)

Look up charlatan (http://en.wiktionary.org/wiki/charlatan), shyster (http://en.wiktionary.org/wiki/shyster) in Wiktionary (http://en.wikipedia.org/wiki/Wiktionary), the free dictionary.

http://upload.wikimedia.org/wikipedia/commons/thumb/c/c0/Pietro_Longhi_015.jpg/180px-Pietro_Longhi_015.jpg (http://en.wikipedia.org/wiki/Image:Pietro_Longhi_015.jpg) http://en.wikipedia.org/skins-1.5/common/images/magnify-clip.png (http://en.wikipedia.org/wiki/Image:Pietro_Longhi_015.jpg)
Pietro Longhi (http://en.wikipedia.org/wiki/Pietro_Longhi): The Charlatan, 1757


A charlatan (also called swindler) is a person practising quackery (http://en.wikipedia.org/wiki/Quackery) or some similar confidence trick (http://en.wikipedia.org/wiki/Confidence_trick) in order to obtain money or advantage via some form of pretence (http://en.wikipedia.org/wiki/False_pretenses) or deception (http://en.wikipedia.org/wiki/Deception).
The word comes from French (http://en.wikipedia.org/wiki/French_language) charlatan, a seller of medicines who might advertise his presence with music and an outdoor stage show. The most well known of the Parisian charlatans was Tabarin (http://en.wikipedia.org/wiki/Tabarin) who set up a stage in the Place Dauphin, Paris in 1618, and whose commedia dell'arte (http://en.wikipedia.org/wiki/Commedia_dell%27arte) inspired skits and whose farces inspired Molière (http://en.wikipedia.org/wiki/Moli%C3%A8re). Ultimately, etymologists trace "charlatan" from either the Italian (http://en.wikipedia.org/wiki/Italian_language) ciarlare, to prattle; or from Cerretano, a resident of Cerreto (http://en.wikipedia.org/wiki/Cerreto_di_Spoleto), a village in Umbria (http://en.wikipedia.org/wiki/Umbria), known for its quacks.[1] (http://en.wikipedia.org/wiki/Charlatan#cite_note-0)
In usage, a subtle difference is drawn between the charlatan and other kinds of confidence people. The charlatan is usually a salesperson (http://en.wikipedia.org/wiki/Sales). He does not try to create a personal relationship with his marks, or set up an elaborate hoax (http://en.wikipedia.org/wiki/Hoax) using roleplaying. Rather, the person called a charlatan is being accused of resorting to quackery, pseudoscience (http://en.wikipedia.org/wiki/Pseudoscience), or some knowingly employed bogus means of impressing people in order to swindle (http://en.wikipedia.org/wiki/Swindle) his victims by selling them worthless nostrums (http://en.wikipedia.org/wiki/Patent_medicine) and similar goods or services that will not deliver on the promises made for them. The word calls forth the image of an old-time medicine show (http://en.wikipedia.org/wiki/Medicine_show) operator, who has long left town by the time the people who bought his snake oil (http://en.wikipedia.org/wiki/Snake_oil) tonic (http://en.wikipedia.org/wiki/Tonic) realize that it does not perform as advertised (http://en.wikipedia.org/wiki/Advertising).
In reported spiritual communications, a charlatan is a person who fakes evidence that a spirit is "making contact" with the medium and seekers. This has been challenged successfully by skeptics who wrote passwords and gave them to people of trust, containing a password that should be spoken by the person if he ever tried to make contact, to validate the truth of the claim. No such claim has been verified. For example, Brazilian writer Monteiro Lobato (http://en.wikipedia.org/wiki/Monteiro_Lobato) and magician Houdini (http://en.wikipedia.org/wiki/Houdini).
Synonyms (http://en.wikipedia.org/wiki/Synonym) for "charlatan" include "mountebank", "shyster", and "quack (http://en.wikipedia.org/wiki/Quackery)". "Mountebank (http://en.wikipedia.org/wiki/Montambanco)" comes from the Italian (http://en.wikipedia.org/wiki/Italian_%28language%29) montambanco or montimbanco based on the phrase monta in banco - literally referring to the action of a seller of dubious medicines getting up on a bench to address his audience of potential customers.[2] (http://en.wikipedia.org/wiki/Charlatan#cite_note-1)
"Quack" is a reference to "quackery (http://en.wikipedia.org/wiki/Quackery)" or the practice of dubious medicine.

Famous charlatans

Famous American charlatans include John R. Brinkley (http://en.wikipedia.org/wiki/John_R._Brinkley), the "goat-gland doctor" who implanted goat glands as a means of curing male impotence, helped pioneer both American and Mexican radio broadcasting, and twice ran unsuccessfully for governor of Kansas. Another famous charlatan was Albert Abrams (http://en.wikipedia.org/wiki/Albert_Abrams), the advocate of radionics (http://en.wikipedia.org/wiki/Radionics) and other similar electrical quackery (http://en.wikipedia.org/wiki/Electrical_quackery) who was active in the early twentieth century.[3] (http://en.wikipedia.org/wiki/Charlatan#cite_note-2)
Another famous charlatan is the Italian Alessandro Cagliostro (http://en.wikipedia.org/wiki/Alessandro_Cagliostro) (real name Giuseppe Balsamo) who claimed to be a Count (http://en.wikipedia.org/wiki/Count).

[Jean]

Ma,
When reading your remark about wondering if you need the herceptin or you think you need the herceptin.

Follow your gut - intincts - don't allow the stress of the fight (shame you have to fight) get you down. Remember your dr. thinks you should remain on the herceptin.

Sending you all good wishes.
Jean

[Mary Anne in TX]

The fight is so much easier with the humor added in. And Jean, your message that I just read, came at the perfect time. Oh, how our minds fool us into thinking we might as well give in, give out, give up! I really am a big time fighter 90% of the time. Done it all my life! But I let my plate get too full and my energy too low and my "fight" paid the price! Thank you for the reminder of my reality! I'll keep fighting! And believing! Lots of love to all for a wonderful day, ma

[Chelee]

Mary Anne, I'm stage IIIA, with 5 of 16 positive nodes. I really wanted to continue on herceptin to complete at least two years. My onc was *not* behind me on this issue which ticked me off because my insurance company had no problems paying for it if she would of went the distance for me. Then she left it up to my 2nd opinon onc at a larger cancer center to decide. That one said no too.

I stressed to both onc's I felt for me it was very important since I was stage III with 5 positive node and wasn't able to have radiation due to lung damage it would cause me. So I felt that was a "good" argument for me to continue on herceptin. Plus all my ECHO's had been great. I was shocked getting told no by both onc's. I feel it was all about saving money in my case. JMHO

All that being said I just wanted to tell you give it your ALL Mary Anne. Looking back I wished I would of pushed alot harder then I did. I gave up to easy and I still kick myself over it. If I would of pushed a little harder I know now I could of gotten it. I can totally understand why you want to stay on it and your onc is behind you and that's half the battle. You got alot of good suggestions here and I have a pretty good feeling you will get to continue. Don't let up...I wish I had fought a little harder. I know how draining it can be to fight for everything...but if in your gut you know this is what you want...go after it with everything you have. Wish I did. Let us know when you get the ok. :) (Thinking positive here.)

Chelee

[Mary Anne in TX]

StephN, your response is exactly what my mom would have sent me. When I was in college, she would send my letters back to be corrected!!!!! I learned so much from her. Her little brains oozed out of her head! That's a goofy way of saying "You're 1 smart, fun to be around, cookie"!!!! Thanks
Chelee, I needed to hear your thoughts and feelings. I so appreciate your honesty. Thank you! ma