Re: Insurance Company Does Not Want to approve TYKERB
 

As I understand Genentech's program for those without insurance or underinsured they just replace the Herceptin supply of the oncologist who supplies it to you, so wouldn't the easiest solution be to get the prescriptions for the tykerb and xeloda, get your oncologist to get Genentech to replace the herceptin you use and just find the diarrhea or hand and foot symptoms from the xeloda intolerable???

Would only require help from Genentech since GSK is slow in getting back to you.

Re: Insurance Company Does Not Want to approve TYKERB
 

Sheila,
I see some suggestions to go on the Tykerb/Xeloda while you push for that dumb insurance co to approve the Herceptin. You know that Herceptin has a long half life (21 days I think), so you would almost be starting the combo you seek. The Xeloda might even work in conjunction with Tykerb even though it finally pooped out with Herceptin.

I don't remember how long you've been off the Xeloda, but remember it worked really well for you, and if you've had a long enough holiday from it, who knows.

Don't give up on the T/H.

Re: Insurance Company Does Not Want to approve TYKERB
 

Sheila,

Please find more people to advocate for you. Call the American Cancer Society, Susan B Komen, your US Senator, and US Congressperson. You can also try your state Insurance Commissioner. I would even call my local and state newspaper. This is OCTOBER after all.

I know what it is to fight these companies. I have done it and have given up. They say no until you say "uncle".

I hope you get successful results.

Marilyn

Re: Insurance Company Does Not Want to approve TYKERB
 

Sheila,

I love the picture of your granddaughter, what a sweetheart.

I am so sorry that you keep running into all of these roadblocks. I hope some of the suggestions being made will be a temporary solution, until you get your insurance company to get their head out of "you know where"!

I am thinking of you, as always!

Love,

Alice

Re: Insurance Company Does Not Want to approve TYKERB
 

Second appeal denied. I have made lots of calls, and so I wait.
Thank you all for all your suggestions, i have looked into most, still with no help. My patience is wearing thin. Hoping tomorrow is a new day.

Re: Insurance Company Does Not Want to approve TYKERB
 

Sheila

I am so sorry to hear what you are going through. I can completely understand, as fighting all of this red tape is something I have had to undergo lately with trials.

Since I was kicked off of the DMI trial due to my bilirubin (and my latest blood work showed it is now down to normal, I am beginning Herceptin long with Tykerb and my insurance company did not give me any trouble just with the tykerb. I did not know that it has to be in combination with Xeloda.??

I wish you all of the luck in getting it. Like the others have said, have your onc. check on it for you.

I am so angry myself Sheila. I did so well on the DMI and since I have been off, I now have 6 tumors back in my liver. I understand Genetech's position, but give me a break. I found something that shrunk 16 tumors (never happened to me before ) and now look. My nerves are so frazzled that I am on the verge of tears always , so I know what you are going through.

Take care my friend - there will be a resolve for you.

Re: Insurance Company Does Not Want to approve TYKERB
 

Under these absurd circumstances recommend you take the rx for both, take the one you want and give the other to someone else here that needs help. I don't doubt they are here.

Anyone heard of the underground network that tries to pass on unused drugs to those in need?

Re: Insurance Company Does Not Want to approve TYKERB
 

have you told them that Medicare pays for it?

Re: Insurance Company Does Not Want to approve TYKERB
 

I think you should get very vocal and contact some news media outlets. Now is a very sensitive time for them to be denying treatment. I'd take full advantage of that.

Re: Insurance Company Does Not Want to approve TYKERB
 

Excellent idea Brenda!!

The squeaky wheel is always the one that gets the grease . . . and in this case, hopefully the Tykerb!

Re: Insurance Company Does Not Want to approve TYKERB
 

Sheila,
I agree, rattle as many cages as you can. In the meantime, could you pull it off financially paying for either the Tykerb/Xeloda or the Herceptin (since BCBSIL's issue seems to be paying for the combo) while you're working it. You know the insurance co is not paying what they are billed for the Herceptin - you might be able to work a deal with patient services to get a reduced rate.

It totally sucks - you do everything right: HAVE insurance all those years, bust your ass surviving as long as you have and now they poop on you. Your job is to fight - the disease, not your insurer! Theirs is to support that by paying for FDA approved therapies.

Sheila, a door will open - keep jiggling the handles.

Re: Insurance Company Does Not Want to approve TYKERB
 

Update on this continuing saga. I have gone through Tykerb Cares, Gsk, appeals etc and the insurance won't budge. Seems I dont qualify for the Tykerb program as I have insurance. Since the Onc. based her whole appeal on my Xeloda failure in previous use (14 mos.) , they will NOT give it to me. I called my husbands company, which is the Electrical utility here in Illinois to see if they can override the insurance snafu....
At one point yesterday, I actually asked CVS/Caremark, our Prescription plan how much the drug would cost me out of pocket. She replied the PPO Reduced wholesale price is around 7000.00 a month....I of course told her that if it wasnt for them denying me Abraxane and me getting Taxol instead, resulting in missing eyebrows, short gray hair and extra weight gain I got from the steroids etc, I might of been able to raise that much prostituting myself for cancer drugs....there was pure silence. So as I wait for the Electric Company to make a decision, I have a choice of either going on Doxil, which will take me off herceptin or trying to get into a T-DM1 trial in Detroit if I can....

Brenda, They do know that medicare pays and they dont care.
Not going down wiithout a fight~~~

Re: Insurance Company Does Not Want to approve TYKERB
 

Sheila,

Oh.... I am sooo MAD. This is wrong in so many ways. Please continue to hang tough.... (easy for me to say). You will get what you need and I am so sorry that you must go through this.

Love, Hope, Peace, Carolyn

Re: Insurance Company Does Not Want to approve TYKERB
 

Sheila, what can we do to help you?

Re: Insurance Company Does Not Want to approve TYKERB
 

Sheila,

Is there still a possibility of getting BOTH drugs (of the pair they approve) but only taking the one?

Then getting the Herceptin from Genetech as Lani suggested...

TRS

Re: Insurance Company Does Not Want to approve TYKERB
 

SHEESH! Where is a knight in shining armour when you need one??? Lets hope the electric company can shock the insurance into cooperating!

I was wondering, as Teri just posted, if your onc can backtrack and ask for the Tykerb with Xeloda combo even though she first prescribed without the Xeloda?

Any word on the Decater T-DM1 trial opening?? I am sure you have been bugging them.

Sending big cyberhugs and positive energy to help you get through this quagmire ...

Re: Insurance Company Does Not Want to approve TYKERB
 

The insurance company will not pay for the Xeloda now either, due to the fact that both appeals from my onc. were totally based on Xeloda failure as I was on it for 14 months. I have called 2 clinical trials today...still waiting.

Re: Insurance Company Does Not Want to approve TYKERB
 

Dang it Sheila.......I'm so sorry. How frustrating and sad that others feel that can dictate or play with our lives.

Praying and hopeful...

Mary Jo

Re: Insurance Company Does Not Want to approve TYKERB
 

Sheila, wish I could offer advice or suggestions, but thinking of you and hoping for a result!

Re: Insurance Company Does Not Want to approve TYKERB
 

This is crap. A few chioce words race through my head as I read your posts about the insensitivity of the insurance company. You gave CVS/Caremark a little shock treatment with your prositution suggestion... This attitude serves you well. Stay strong, never give up.

Who or what will influence these insurance companies???

My idea, Sheila--draft letter explaining the denial. You (or Joe) will be able to explain it more concisely. Send us the address of your insurance company (name names). We can cut and paste your letter to our own letterhead and mail it individually demanding a resolution. It's worth a shot.

Stay strong.

Love you,
Dana

Re: Insurance Company Does Not Want to approve TYKERB
 

haha Dana. Great idea.

Re: Insurance Company Does Not Want to approve TYKERB
 

Sheila - I admire your fight with this issue - as someone suggested if we bombard someone with letters of protest let us know. I also like the idea of contacting the media & getting your dilemna public attention as a great example of how the insurance company dictates our treatment not our doctor's best recommendations. I really really admire your sense of humor as well as your perseverence. I'm in your cheerleading section. Pam

Re: Insurance Company Does Not Want to approve TYKERB
 

Dana, thank you for the offer...I may need it. Last night after getting a no from my husbands company, I decided to write my own appeal to the insurance and Caremark/CVC. I faxed 14 pages, much of the info I got from all of you in this post...I know it will probably do no good, but I felt by doing this, I was getting the last word with them....I will start calling as soon as they open this morning.....I am hoping they will be so sick of me they will give me the damn Tykerb to shut me up!

Re: Insurance Company Does Not Want to approve TYKERB
 

I love the plan of action!
Still believin' ma

Re: Insurance Company Does Not Want to approve TYKERB
 

My letter will be up front.

AND I will write to them that I am sending my letter to every major newspaper in the country. We should all do likewise. Maybe a threat of bad publicity will get them moving.

What WILL they approve at this point? Are they admitting to approving nothing at all?

(I guess they still pay for Herceptin at this point?)

Re: Insurance Company Does Not Want to approve TYKERB
 

If someone will E-mail me the address of the insurance company Ill write them too. I am a pharmacist in his sixties who can remember the pre-insurance, third party days when people paid for their meds like you buy food. the prices of the drugs were 1-2% of what they cost today. Tykerb might cost a faily 200 dollars for a months supply not 7000. What family could afford 7000-8000 a month for one drug? I smile when I work at Rite aide and somebody pais a 45 dollar copay for a drug only partly covered by insurance. Invariably they will ask something like "What would it cost me without insurance?" The answer: 275 dollars. The response : WHEEEEEEEW Thank GOD I have insurance. What the people dont realize is that the copay they are paying is twice as much as they would have paid in the cash days of 20plus years ago. If you want me to write send me the address of the Insurance company. My e-mail address is Donocco5w4@AOL.com

Paul

Re: Insurance Company Does Not Want to approve TYKERB
 

Ditto for me (though I do not have the pharmaceutical background :-) ). My email is gdc_j@megagate.com Strength in numbers. Maybe we can even come up with a format of a letter to write so we all can flood the insurance company. Take advantage of this internet and get it posted beyond the borders of this site.

Re: Insurance Company Does Not Want to approve TYKERB
 

my email is timmfam@ligtel.com

I have no problem making my voices heard. I just want to have the facts straight before I write a letter.

Re: Insurance Company Does Not Want to approve TYKERB
 

Dear Sheila -
We will ALL be glad to help you keep that wheel squeaking good and loud.

Remember how the 'activists' handcuffed themselves to their steering wheels and blew the horns in front of Genentech to protest not getting Herceptin for compassionate use?

Dressed in our fishnet stockings, short skirts and red heels ...

Re: Insurance Company Does Not Want to approve TYKERB
 

Sheila, ready to join the fight WHERE SHOULD WE WRITE? Michka

Re: Insurance Company Does Not Want to approve TYKERB
 

hmmm...when our cabin was flooded by a broken pipe fixture (during Ruth's chemo to boot) and insurance was really balking I finally wrote to the state insurance board. That got Travelers moving in a hurry. It was a good "learning" for me as they had me believing their claims that they were not resonsible for x , y and z. (they were) I called the TX State Insurance Board as a last resort. Traveler's did an abrupt about face, and it was clear that they were just out to try to fleece us if they could.

Is there something like this for health insurance?? (maybe even the same entity?)

Re: Insurance Company Does Not Want to approve TYKERB
 

Sheila - hang in there - wow - sounds like a bunch of stupid people at the insurance company!
I have to thank god, again, that I live in Italy with free health care and my oncologist dictates what I get --- very cool!

Hang in there - something will give-
Joe's on it now!

;-)
Karen

Re: Insurance Company Does Not Want to approve TYKERB
 

Sheila,

Just wanted to lend you some 'moral support'. I recalled the story my Mother had told us many times. It was during my Oldest Sister's hospitalization. She (14 years my senior) was having pneumonia and needed an antibiotic shot that was very expensive at the time because it was a new, imported drug. The hospital staff told my Mother that the shot would not be administered until our family paid a 'garrantor' downpayment on the drug. My Mother, a small town mayor, 'pounded' on the desk in the office and 'told' them to give my Sister the 'shot' - "Right now!"

Oldest Sis got the needed medicine and recovered soon. Whenever I was in a similar situation, I thought about my Mother and held my ground [very much against my personality as I am the 'baby' in the family. Just did it with my family doctor on demanding an MRI. Now he's giving me a referral to the neurologist after getting the MRI report.]

Re: Insurance Company Does Not Want to approve TYKERB
 

Great news with support from the group! WOW! Very cool! And, Jackie - love the pounding the fist --- I think I'll try that too - I want an MRI to baseline to make sure there is nothing going on (bad) in my head! :-) HEE HEE. I'm the baby too - and forceful -but hate having to get the fist out.

Great advise all!
K

Re: Insurance Company Does Not Want to approve TYKERB
 

Hi Sheila,

I hope that you are getting somewhere with this fight.

Please forgive me if you have already gone into this but can you please explain why they can prevent your doctor from prescribing Tykerb alone?

You said, "OK, today is day 9 since Tykerb was ordered, the insurance company, BCBSIL and CVS/Caremark is not wanting to approve because it was not ordered with Xeloda.....

I know this is happening all over the place (because it happened to a friend of mine) but what is the justification for saying no if Medicare approves? Is it because it is an oral drug. My heart breaks for you in this fight (it is SO WRONG) and I am not sure if others realize what a big problem this is becoming for us. Understanding more may help us be better advocates.

Love, Hope, Peace, Carolyn

Re: Insurance Company Does Not Want to approve TYKERB
 

Apparently rules is rules... so the key is really listening to what they say they need in order to fill it. If they require it with Xeloda, then get it written with Xeloda, and don't take the Xeloda. Sounds wasteful, but these kinds of stories of waste and inefficiency happen all over the spectrum. Better than being in the UK though, where NICE just turned down access to Tykerb again this week... sad.

Re: Insurance Company Does Not Want to approve TYKERB
 

Hi Sheila

I am so sorry for what you are having to go through with all of this. --

I am a little confused as to the refusal.

Do you have Blue Cross Blue Shield as your insurance?

I also have Blue Cross (blue options plan) with my company. My onc called RX -to - Go and placed the order, they inturn ok'd if covered by Blue Cross who said yes and I received immediately. I don't really think that the onc or the pharmacy has the call to refuse- it has to be the insurance company. I do not understand how the Pharmacy co. can refuse if your insurance approves.

I know this all can be so fustrating, but just wanted to clarify that point for myself since I am so frustrated for you.

Good luck my friend

Re: Insurance Company Does Not Want to approve TYKERB
 

I think Sheila said in an earlier message that now they will not approve the Xeloda/Tykerb combo due to the fact that the doctor stated that Xeloda in the appeals for Tykerb/Herceptin had failed for Sheila. And they did not and still do not approve Tykerb by itself, perhaps because the studies were done in combination with Xeloda?

@#$%^&* greedy, uncaring, insensitive asses looking for any excuse to say no imho.

TRS

Re: Insurance Company Does Not Want to approve TYKERB
 

All I know is this is a bunch of bull sh$% & it really ticks me off. Like we don't go thru enough fighting this misrable disease. Shelia...if there is ANYTHING we here as a group can do for you just let us know. I am sure everyone would be more then happy to help in anyway possible. Write letters, make calls...you name it! Every minute of every day for you should not be eaten up trying to get the insurance company to ok Tykerb. This is beyond ridiculous which I don't have to tell you. It makes me so angry that you have to deal with this.

Have you heard back from them since you last FAXED them the 14 pages you sent? I hope something positive has happened by now? If not...I'm serious...lets figure this out and get you that Tykerb...there has got to be a way!

Chelee

Re: Insurance Company Does Not Want to approve TYKERB
 

I think the denials from CVS/Caremark said that they can only fill it if written with Xeloda regardless what the doctor described about her history with Xeloda... which means that they don't really care that you have had previous failure with Xeloda, that is what you need to do for them to fill it. They gave the answer, it's just a matter of latching on to it and doing it their way, even if it is a stupid way.

Luckily in her most recent post, she has gotten spectacular results by sticking to her guns and writing her own appeal, so hallelujah!