insurance news after a month

lisa42

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

Oh my goodness!!
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

Wow
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

Lisa
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

So sorry for the news
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

that just sucks
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

Horrid treatment
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

Mary's right - This just
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

Shared this at SPUR tonight
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

So Sorry Lisa!
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

Good for you
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

suggestion
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

AnneCan

Lisa,I am so sorry you are
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

AnneCan said:

Lisa,I am so sorry you are
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.

Lisa
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

Lisa...
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.

msccolon

imagineit2010 said:

suggestion
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

Patient Advocate Foundation
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

Aud

Lisa
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

Unknown

Aud said:

Lisa
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

This comment has been removed by the Moderator

lisa42

thanks, everyone
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

lisa42

msccolon said:

Patient Advocate Foundation
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

Patient Advocate Foundation
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

lcarper2

lisa42 said:

thanks, everyone
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

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