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insurance news after a month

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

After much effort and waiting, I was given the news from my Health Net insurance rep that they sent a fax to my dr's office a whole week ago denying the drug Gemzar for treatment for me. I was almost expecting a denial at this point, but what even made me more upset was the way they were playing games. The day they supposedly sent this denial fax letter to my onc's office (which my onc's office NEVER received), they also requested a copy of all my records to "take it before the review board". Health Net then acknowledged they received all my info, but said "it doesn't matter- this drug isn't FDA approved for colon cancer, so we can't authorize it." So, why in the world did they request the info and why did they say they were taking it before the review board? After exploding and then trying not to cry on the phone, I then spent the next 40 min. on the phone w/ the Health Net rep going over all my history and current situation, then giving info to file an appeal. I gave lots of info, including the references and documentation from three different oncologists (including Dr. Lenz at USC/Norris) about how two clinical trials on this drug showed up to 50% of the advanced colorectal patients had a good response. What more do they need to see? The issue really isn't even money because oxaliplatin and irinotecan are just as expensive or more, and insurance would approve them. Anyhow, after the rep was done taking down all my info, she said that she was submitting this appeal under an urgent status, and that the maximum turnaround time for an urgent appeal is 48-72 hours. Then she said, "I must tell you, though, that they can look at the request and decide that it isn't considered urgent after all, then it could take much longer- I've seen that happen a few times." Before I hung up, I said to the rep to please make a notation on my appeal that I am not a statistic- I am an otherwise healthy 43 yr old mother of three young children & that if I start to decline in health following their denial, that my blood will be on their hands. Would they deny the med. if it was their mother, husband, or kids who needed it?

The lousy kicker is that the onc's nurse was telling me that if I start on oxi or irinotecan instead (just to get started on something, even if they didn't work that well before), that that could really kill my case with Health Net in trying to get the Gemzar approved. They'd think "oh, she does have something on the approved list she can take, so we're not going to approve this other drug." She said it will get to the point where we hae to do something, though. (I thought I was already to that point!) She did say that I could go ahead on it now if I wanted because it's something they do keep on hand & I could pay cash and try to get reimbursed after the fact. I was told that it will cost me close to $4,000 for each three week cycle.
I finally let the nurse know that I still had some leftover Xeloda pills from a year ago & that I had started taking them on Wednesday. I had enough leftover for 2-1/2 weeks at 2500 mg/day. I thought about doing this earlier, but didn't want it to mess up or interfere with the new treatment. I don't know that the Xeloda will do a whole lot, but at least it's something! The nurse said she'd probably have done the same. My oncologist is "off on vacation" AGAIN this week, so I have no way to talk to him, not that he'd even call me if he was there.

In the meantime in addition to now taking the Xeloda, I am juicing, started two weeks ago to avoid sugar, red meat, and milk, am now drinking alkaline water, and taking resveratrol supplements, tumeric supplements, and I just bought some cimetidine (Tagamet) over the counter at Wal Mart. The OTC version is 200 mg a pill. I read on the online study of it a few yrs ago that the rec. dosage is 800 mg/day. I will double check on that. I believe that's also what Dr. Cantrell had said he would put me on (right about the time I stopped his treatment since it wasn't working).
Don't know if all this is nonsense or if there's something to it, but there just may be something to it, so I'm going to try it! It doesn't sound like it could hurt, and I've heard of a few on this board who had mentioned it to their oncs & got prescriptions for it (even though their onc was skeptical, but said it was harmless to take).

So, sorry I have bad news to report- it's been a frustrating month of waiting and dealing with idiots! Onward and forward... I'm now about to go get dinner for my now 17 yr old son's birthday! (and I will drop this topic and slap a smile on my face- lol!)

Lisa

Jaylo969
Posts: 827
Joined: Jan 2010

Lisa, my heart goes out to you. I know all this must be making you so stressed out and I think it has been proven that stress does NOT rock...is bad for your health both mental & physical.It's such a shame to be at the mercy of insurance companies who have $$ signs in their eyes & hearts of stone, & doctors who aren't there, and meanwhile you are fighting for your health & life.I'm sorry you are having to deal with all of this.

I will keep my fingers crossed that their hearts will become softened for you & your need and approve the medicine for you ASAP!

I hope you will be able to relax but I know how I would be....tense and scared.

-Pat

christinecarl's picture
christinecarl
Posts: 545
Joined: Sep 2009

I am sorry for all you have gone through with insurance. I applaud you for sticking up for yourself, fighting back the tears, and telling them how you feel. Insurance companies are souless bastards. Good luck to you, I hope everything works out. {{hugs}}

geotina's picture
geotina
Posts: 2123
Joined: Oct 2009

I was thinking about you today at work and wondering what was going on. I'm sorry, it seems to me the right hand does not know what the left hand is doing. Your onc's office doesn't seem like they are on top of things. This is nothing routine. You have an urgent need and it should just not take this long. I'm so sorry you are going through this. Any attorneys you know that could put in a word for you both with your oncologist and insurance company. Sometimes a letter from them gets things moving in the right direction if you run into a stone wall. Too much time is going by and it makes me angry, there just is no need for this. I'm sorry. Tina and George

Lovekitties's picture
Lovekitties
Posts: 3372
Joined: Jan 2010

I just hate it that you are getting the run around not only from the insurance company but also your doctors.

I would suggest that you request a copy of the denial for your own records, especially since the doctor's office said they never got it.

I sure hope that insurance company will change their minds and pay for your requested treatment.

Take care and keep up the good fight...you are an inspiration to us all.

Marie

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

No other way to put it! I can't believe your insurance company is so callous! You were right to ask how they would feel if it was their relative faced with this decision. It might not change the company policy, but perhaps there's a bit of conscience in the person you were speaking with and it made them think. Something needs to be done and yesterday! I am so sorry you are going through this, you have endured so much. Keep strong and I pray things will turn around for you and soon.
mary

ganders2's picture
ganders2
Posts: 13
Joined: May 2008

Hi Lisa,
If your state has a Bureau of Insurance, I would urge you to call them and make a formal complaint about the treatment you are getting from this company. I used to work in health insurance, and I know that these companies don't respond to a complaint from a member, but they really jump if the state contacts them.
I hope this helps you! Good luck and I am so sorry this is happening to you!

Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

Mary's right - This just sucks. I really love it that you are acting - doing what you can to fight the bastards, and doing what you can to take care of yourself. I'm on a chemo break and I'm feeling strong and fierce. I wish I could bash some f&*#*#@ heads in for you at your "insurance" company. We're with you. Keep juicing. Drink up the happiness.
Roger

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

Lisa, I told some prayer warrior adults and youth at SPUR tonight about this and asked them to pray for you, too.

I wish I'd been able to think of something to say since we 'spoke' on Facebook earlier but my heart is heavy for you right now and I can only offer prayers and love,

Diane

robinvan's picture
robinvan
Posts: 1014
Joined: May 2007

How frustrating!!

Have you considered approaching your church for some financial help to get the treatment you need? I understand that churches and other faith communities are one of the largest sources of non-insurance funds for chemo and other treatments.

Perhaps if the church even took the leadership and friends and family could help out by contributing. A fellow in our community just had $75,000 raised by community groups and teams and is now NED after an expensive round of Erbitux.

It would be nice to get this started!

You are not alone Lisa. We're all with you.

Rob; in Vancouver

tootsie1's picture
tootsie1
Posts: 5065
Joined: Feb 2008

Lisa,

I'm so amazed at your strength and courage. You really stood up for yourself! I'm proud of you, and I'm praying that something really good will happen for you soon.

*hugs*

Gail

imagineit2010's picture
imagineit2010
Posts: 153
Joined: Jan 2010

Lisa, your situation is really unfair. Insurance companies can be monsters sometimes. I fought for a month to get a EUS approved that was needed to stage my cancer. It was denied and the appeal was denied then the urgent second appeal was in the process when I found out it was supposed to be approved in the first place. I just had to ask the right questions as they don't "offer" any information voluntarily. If you haven't already, you should really contact the Patient Advocate Foundation. You can call them @1-800-532-5274. Their services are FREE and they will get you a case manager who can help with you insurance issues. They even have programs to assist with your exact scenario. I'm surprised more people on here don't talk about them since they have many assistance programs. They sent me a wealth of information and they seem to help alot of people. Hope you get this resolved quickly. I enjoy reading your posts (when they're good news) and you truly are inspiring with you courage.
Chris

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

Thank you for mentioning it, I completely forgot about them! They helped me back in 2006 when I was having problems getting my insurance reinstated after a divorce! I was in the hospital the night before my surgery still trying to resolve the last of the issues and my Patient Advocate couldn't have been more helpful!
mary

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Chris,

Thank you for mentioning this Patient Advocate Foundation- I will most definitely look them up on the web and see if I can contact them for help.
Mary, glad to know they were helpful to you.

Hugs to all- thanks for the support and encouragement! :)
Lisa

AnneCan
Posts: 3692
Joined: Oct 2009

Lisa,

I am so sorry you are getting the run-around! I hope you get the answers you need soon. Good luck! You have done a fantastic job of advocating for yourself, researching options etc.

lcarper2
Posts: 638
Joined: Dec 2009

Check out this drug you are wanting to get online in mexico or canada if you can get the scrip you can buy it there.

HollyID's picture
HollyID
Posts: 951
Joined: Dec 2009

So sorry that things kinda went south.
How frustrating that your onc and your ins. wants to balk. Good for you for taking the supplements you are. I also think about taking tagamet. I do remember reading the daily dose is 800mg.
I love your perseverance. You're still one hell of an inspiration to me.

Aud's picture
Aud
Posts: 480
Joined: Oct 2009

I am so sorry that you're having to deal with all the BS from the insurance company. It is so frustrating. Why can't they just give you the care you need?! It's so #$%- ridiculous how these clods in the insurance company make these decisions for us!
"good luck" sounds lame. We all (society) need to do something more.
Aud

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lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi again,

Thank you to all who commented and/or made suggestions! I will let you know again what ends up happening with this. I don't know how long I should wait on this- I do have a couple of people trying to help out, so we'll see what happens.

Take care all of you-
Lisa :)

lcarper2
Posts: 638
Joined: Dec 2009

Take care and it's hard to wait when everyone is draging their feet.

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Knowing they were going to deny the drug and making you submit info for a "review board" that was already going to deny it, is so infurating, Lisa!

Many of us don't have the time to waste jumping through imaginary hoops. Your frustration, hurt and anger over this past month has been alot for you to have to contend with. With what you are facing, it would be nice if the agencies in questions could at least not waste your time, if they cannot offer you anything.

You've done everything right and are continuing to do - I echo everyone else's sentiments and you know how I feel about you.

I just don't know what to say right now. It's so difficult to see one hurting and not be able to fix the need.

Your story inspires so many people!

-Craig

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Craig,

Thanks for your kind and supportive words. :)
I just wrote down the phone # for the Patient Advocate Foundation that Chris gave above. I'm hoping that they'll be able to give me advice or intervene on my behalf. Someone I think even mentioned something about the state insurance commision. I will look into that too if I don't get something going in a couple of days.

I'm doing well "other" than all this major garbage. Trying to still keep in perspective what's important in life. I'm taking my youngest daughter out to lunch today, as she's been having a hard time with being at school lately. She'll appreciate me doing that, i know.

Well, hope you are doing well & that you have a good week (or what's left of it) :)

Lisa

just4Brooks's picture
just4Brooks
Posts: 988
Joined: Jun 2009

They sure are fast to collect when we owe them money... But when it comes to paying for something they sure hate it. I think the best idea is the Patient Advocate Foundation that Chris gave above. The bigger the boots the more results you might get and I dont think they want the Patient Advocate Foundation on there backs for long. Keep up the fight and remember if you ever want to go to lunch or anything let me know.

Brooks

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Thank you so much, Chris, for the # of the Patient Advocate Foundation. I am going to call them today & will let you know what they say and how that comes out.
Everyone on this board is always so helpful!!
Have a good day!

Lisa

Mary5777
Posts: 19
Joined: Dec 2008

Lisa, Sorry for all the problems you are going through, and then with insurance problems too. I am not really good at figuring out insurance forms, altho i go through them throughly every time. To see what they approved ,how much, and what i owe. Anyway, when i started my chemo 3 years ago, we had different insurance and i had a $5000 deductible.. The financial woman came to see me..You could fill out paper work and if qualified, paid nothing. We would have qualified but they took into consideration my hushands retirement plan. Anyway, so they now keep a running tab, and i pay $25. a month, with no interest....I pay more when i can...But they were really nice. Do you have any program like that...or will they not allowed you the medicine? I thought maybe you could start on such a program, till they approve it...I believe if you fight hard enough sometimes good things happen.
Have a good day with your daughter....And keep fighting and smiling....Mary

imagineit2010's picture
imagineit2010
Posts: 153
Joined: Jan 2010

Lisa, you have been a great help to many people on here so I hope what comes around goes around. I am a firm believer in the idea that everything happens for a reason. I have had far too many coincidences in my life to not feel this way. If I can help just one person with a problem in their life and the reason I was able to help that person was due to my getting cancer then it makes my hardship that much easier to accept. My getting cancer may not result in finding a cure but it can certainly result in finding a possible solution to even the smallest of problems and that matters. The possibilities of "something positive always comes from something negative" can get anyone through their darkest hour. If the end result of my simple suggestion (god willing) happened to get you medication that can save your life then I could explain to my kids that my (negative) disease put me in a place to help save someone's life. Perhaps they, as well as myself, could better accept whatever happens to me. Your awfull situation led others to reach out with compasion which gave you new hope of a solution which in turn gave others a sense of worth in their own self by giving comfort to someone in need. It's one big circle and you are a big part of it. I pray it works out for you.
Chris

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Brooks,

Yeah, they sure are quick to collect, aren't they? The same day I got my denial (yesterday), I also got their monthly bill in the mail... a whopping $1,491 for a month of family insurance coverage- all so I can also start paying cash in addition to that for the drug they've denied me!
I just sent an email to Dr. Lenz- he replied literally within minutes of me sending the email. He is going to have his assistant write up a letter and fax it to the appeals dept at Health Net today citing the more specific study data on Gemzar (since one of the studies for Gemzar w/ advanced colorectal patients took place there at USC in 2006). I will be on the phone pretty quick here to the Patient Advocate Foundation.

Hope your day is going well, Brooks!
Lisa

cowman
Posts: 61
Joined: Jun 2009

Lisa,

Have been looking for news from you and this sure wasn't what we were all looking for. I think there is enough collective energy on this board to 'stomp down the doors' of the insurance company and give them a piece of our minds!

You have received several good replies and I pray that something will work out. I wish you could just jump in there and start on the Gemzar and see what happens. Surely it will work out and you don't want to wait and worry. My prayers and positive thought are with you.

Keep up the juicin'!

Diane

SandyL
Posts: 220
Joined: Feb 2009

I am now wondering if it would help if a bunch of us sent letters to the insurance commission or other agency. If safety is in numbers, perhaps a few letters directed to the right folks would help. We certainly have numbers here! And I for one would be glad to send a letter on your behalf without getting too much in depth to your personal information. It just really bothers me that when we need that insurance is when we get the biggest fight. Whether it be car, house or health insurance. Totally stinks. Rotten!
Sandy

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