Tell me what to say, please...

Mary Anne in TX · 05-20-2008, 08:25 AM

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 · 05-20-2008, 09:49 AM

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 · 05-20-2008, 11:07 AM

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 · 05-20-2008, 11:22 AM

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 · 05-20-2008, 11:29 AM

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 · 05-20-2008, 12:32 PM

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 · 05-20-2008, 12:54 PM

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 · 05-20-2008, 01:00 PM

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 · 05-20-2008, 01:33 PM

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 · 05-20-2008, 01:35 PM

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 · 05-20-2008, 01:54 PM

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 · 05-20-2008, 02:45 PM

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 · 05-20-2008, 03:00 PM

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 · 05-20-2008, 06:16 PM

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 · 05-20-2008, 06:32 PM

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 · 05-20-2008, 06:42 PM

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 · 05-20-2008, 07:04 PM

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 · 05-20-2008, 09:14 PM

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 · 05-21-2008, 01:26 AM

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 · 05-21-2008, 07:01 AM

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