Insurance Company Does Not Want to approve TYKERB

[Sheila]

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.....gee, I was on Xeloda and failed, I just cant understand why the pharmacy at Caremark is dictating my treatment regimen instead of my Oncologist. In the meantime, the lump in my neck continues to grow...after 4 phone calls today and getting no where, I finally lost it and broke down in tears....now maybe they can give me something for stress while they decide whether or not to approve something to help me fight this damn cancer.
Hoping tomorrow is a better day.

[Mary Anne in TX]

Are they completely NUTS?????
Sometimes I think those "guys" live on another planet!
Will your doctor call them? That's what it took a couple of times
for me to continue my treatment!
I'm praying for quick action and someone getting appropriately angry!
Luv ya, ma

[Shobha]

This is really the limit!! I pray that they will approve it right away and you get some peace. This is so cruel.

Love,
shobha

[AlaskaAngel]

Sheila,

While you get your doc to deal with the insurance company, try to see if the drug company, under the circumstances, will consider providing it to you.

Wishing every bit of good comes your way,

A.A.

[tricia keegan]

Sheila, a friend of mine recently had a similar problem when she tried to get avastin approved without xeloda, she lives in Florida.
In the end she had to take the xeloda with it which was ridiculous as she had spent eleven years on chemo and needed a break.
I can't offer any advise on insurance companies to you, but hope your onc can take it up with them on your behalf??
Why not have him order the xeloda and just not take it but use the tykerb??
I'm sorry you're upset and realize the last thing you need right now is to stress about this!

[StephN]

Dear Sheila,
I am sorry the "powers that be" are being such BUTTS! This is the last thing you need to worry about.

There is something called "Tykerb Cares" that should help you. Your doc's nurse may have to get into the act, but I have heard of results from that sector. More phone calling is not what you need, but I know YOU are expert at working these things out.

Has the FDA approved Tykerb ONLY when taken with Xeloda?? What about the gals getting Tykerb with Herceptin, etc?? Puzzling.

[schoolteacher]

Shelia,

Hope you get the medicine soon. Maybe the people Stephanie is talking about will help.

Amelia

[michka]

Sheila, I am so mad. How can they deny you half a treatment when they are ready to pay for Tykerb AND Xeloda?? Well, if that's what they want, have your Doctor prescribe Tykerb and Xeloda and only take Tykerb. You don't need this kind of stupidity on top of worrying about the treatment. I send you hugs and hope they will realize how ridiculous this is. Michka

[Carolyns]

Sheila,

This is SO wrong! Just another way to get around paying for treatment. I wish I had a bottle to send you.

My doctor shared with me how much harder it is getting every day to get what she needs for her patients via the insurance companies. She said she can spend half of her day explaining why she needs to get authorization for her patients. It is like the doctors have to adovcate and prove that we need what we need. I wonder how many doctors just run out of time to fight the insurance company.

I hope this gets resolved soon. It is so wrong.

Love, Hope, Peace, Carolyn

[hutchibk]

It is considered pharmaceutical... so your "medical plan" under insurance that pays for infusion chemo will not pay for it.

Quite simply and disgustingly, this is because MEDICARE doesn't pay for it either. Insurance companies are allowed to, and do (to a lesser degree I promise), follow Medicare guidelines and restrictions and denials. I can't blame them... Medicare has been established as the "coverage model" for the whole system, including private.

Medicare doesn't pay for it under part B "medical plan" (the outpatient part of the Medicare plan).

If you have Part D with Medicare, it pays for it up to the donut hole, which is only about 3/4 of a month's worth, then you carry the responsibility through the donut hole ($3500 I think) until it is covered again.

When this happened to me when I was still on BCBS, my pharmaceutical nurse advocate at my cancer clinic helped me fill out the paperwork to gain access to it through GSK Access to Care, and she finessed the process for me.

Find your pharma nurse advocate and get them to help you.

Welcome to the shape of things to come.

[Sheila]

Well, the insurance called this afternoon with their "denial reasoning". Seems they will not pay for the Tykerb as it is only approved with Xeloda....if I get the Xeloda, they won't pay for the Herceptin...its a catch 22. Seems that the Oncologists should be dictating our care and not the Pharmacys or the insurance companies! Enough tears for today, tomorrow is another day, and the fight will continue. Keep me in your prayers!

[Bill]

Sheila, all I can do is reiterate what everyone else has already said. Have your doctor call, and you keep calling, contact the pharmaceutical company, and maybe check with your chemo. nurses and "others". Sometimes they may receive donations of medications that patients no longer need. You hang in there, girl!

[chrisy]

You're right - your doctor should be making the decision! Assuming she has a rationale for this combo (which I know she does), can she help with providing this, along with whatever data there is supporting this.

maybe Flori or some of the others on this combo can give you some additional ammo as well.

To start, could you get the Tykerb with Xeloda while you're pushing for the Herceptin as well? Even though Tykerb/Herceptin failed you, you may still get some synergy with Xeloda. Think of it as swapping out the Herceptin piece?

Keep pushing for the combo, but you shouldn't be naked. Here's a couple of links that may help support your case.

http://professional.cancerconsultants.com/conference_main.aspx?id=42119

http://kinasecentral.wordpress.com/2008/05/16/tykerb-plus-herceptin-increase-pfs/

[hutchibk]

Sheila, please read my post. It has the solution I used when I was in your shoes, and it explains that if the Government doesn't cover it, neither will private in many cases.

I do now get it through Medicare, but under Part D, with the donut hole. And I get it with Herceptin, without Xeloda. Tell BCBS that Medicare Prescrip Part D approves it by itself with Herceptin... that may get their attention. I asked my Onc how we were able to get me on Ty/Herc and he said that since they are each FDA approved, it doesn't matter that the combo is not FDA approved...

Also, send them an appeal letter discussing that Medicare covers it under Part D without Xeloda... cc: your state board of insurance and follow through with a copy to the state board of insurance. That is a pretty effective way to get their attention.

Find out if there is a pharmaceutical advocate at your clinic... mine is a US Oncology affiliated clinic, and my nurse advocate was my lifesaver in helping me gain access to Tykerb. http://www.usoncology.com/portal/page/portal/PubWeb/A_Audience/A_Patients

Just to clarify, BCBS is denying it through your prescription benefit, right? It's not through your medical benefit?

You can probably get it through GSK Access to Care. Email Joe... there may be a compassionate use angle for you in combo with Herceptin.

Also, they are preparing to enroll for a trial of Tykerb/Herceptin for mets patients... do you qualify?
http://clinicaltrials.gov/ct2/show/NCT00968968

[Joe]

Brenda and All,

We are working on this.

Rgards
Joe

[hutchibk]

wonderful... Joe rocks.

[Laurel]

Sheila,

I think the log jam will break with such amazing warriors as Joe and Brenda behind you! Good luck!

[WomanofSteel]

As if it isn't bad enough that we have this crappy disease to begin with, we have to have the stress of battling it out with insurance companies just to fight it. I hope that the doctor is able to help you. If not, the ladies had some good advice. Good luck!

[Joan M]

Sheila,

You don't deserve this. I would involve your onc to help in getting the recommended treatment without any strings attached.

Joan

[RhondaH]

Sheila,

Stinks that you have to fight cancer AND the insurance company, but have the doc write letters, make phone calls, do as Steph says and call for compassionate use. I hope this gets resolved quickly and that you will be able to use that time to play with those wonderful grandchildren of yours. HUGGLES!!!! Take care.

[Pam P]

Sheila - Sorry I have no advice just want to say I hope you and your onc. can get this through the insurance snafu in a hurry. I have a few tykerb left I could send you - call me if it would help. Brenda and others have great suggestions for ways to get this resolved. Sorry you have to deal with this - isn't dealing with cancer enough! Pam

[Joe]

To be presented at the San Antonio Meeting:

9:30-11:15 GENER AL SESSION 5– Exhibit Hall D

9:30
61. Updated Survival Analysis of a Randomized Study of Lapatinib Alone or

in Combination with Trastuzumab in Women with HER 2-Positive Metastatic
Breast Cancer Progressing on Trastuzumab Therapy
Blackwell KL, Burstein HJ, Sledge GW, Stein S, Ellis C, Casey M, Baselga J,
O’Shaughnessy J. Duke University Medical Center, Durham, NC; Dana-Farber
Cancer Institute, Boston, MA; Indiana University Cancer Center, Indianapolis, IN;
GlaxoSmithKline, Collegeville, PA; Vall d’Hebron University Hospital, Barcelona,


Spain; Baylor Sammons Cancer Center, Texas Oncology, PA, US Oncology, Dallas, TX

[Patb]

Sheila
I know of one person on the combo and her
insurance pays, it just isn't fair why you can't
be. Keep trying and we will keep you in our
prayers that this will work out and fast. You
have a great team....
patb

[Jackie07]

Really hope something's done soon about this health care mess. Pam's offer is so heartening. I remember reading similar things before. I'm so proud to be a member of this very caring group full of compassionate people.

Sheila, things will work out. Stay with your 'sisters' and know that we are all behind you.

[TSund]

That is so crazy. Do you have a lawyer friend that can call them? It is absurd that it takes that, but sometimes that's all corporate America will listen to.

TRS

[hutchibk]

Lawyers can do nothing in this circumstance. You have to go through the channels...

[Sheila]

Again, thanks t everyone for all the thoughts, suggestions and help. I was on the phone again yesterday 4 times with my Oncologist as she does the appeal process. My day started with a phonecall from Caremark/CVS telling me I WAS officially denied and a letter would be forthcoming. Of course I responded by telling them maybe i can just go to CVS for all my cancer treatments and bypass the oncologist since Caremark/CVS seems to be calling the shots. I asked if they had an infusion room and qualified nurses for accessing my port....dont think they were happy with me at 8am.. Went to hear a speaker last night who is a 3 time breast cancer survivor...she said everything happens for a reason...I am still trying to figure this reason out, but today is a new day....and the fight continues.

[Carolyns]

Hi Sheila,

My thoughts and prayers are with you. I hope you get your meds soon.

Love, Hope, Peace, Carolyn

[julierene]

I got Tykerb and Gemzar approved by BCBSTX... Have you had the chance to try Gemzar yet?

[Chelee]

Shelia, I wish I had the answer for you but unfortunetly I don't. Just reading what your dealing with has blood shooting out of both eyes! This is unbelievable. I loved your comment about going to CVS for your cancer treatments. Ha! Since their obviously in charge seems like a fair question to me. What time to you show up at their infusion room.

I sure hope you can get this resolved soon...what a nightmare. This is far too much stress on you and there is no excuse for it...none of it makes any sense. I just want you to know you are in my thoughts and prayers. I'm hoping today brings an end to this and you get what you need! Sending lots of positive energy your way.

Chelee

[Jackie07]

Sheila,

I hope things are improving. Your situation reminded me the frustration I had to get a special contract from my insurance company almost 20 years ago.

My neurologist told me he would only recommend a certain neurosurgeon in town (affiliated with a hospital not covered by my insurance company) to do my brain surgery (ended up to be a 23-hour operation.)

I called my insurance company about the situation - I cried, I threatened, I pleaded, to no avail (couldn't even pass the operator) I was very fortunate to have a library director back then who had had quite some legal experience and got me a lawyer who had just won the Texas Young Lawyer of the Year award.

I remember the sleepless nights. The neurosurgeon, who happened to be of my same ethnic background and had been introduced to me (but I was already dating my husband)when he first moved to town, checked on me right away the day of my diagnosis (he took my call while he's in the operation room when I had told his secretary that it's an emergency - and we waited 3 hours before he finished that surgery and was able to see me.)

Later, while we were struggling with getting hold of the insurance company, he told us that 'they should pay' (I asked him if we should go the 'fundraising' route) and told us to go to the ER if certain signs appear.

Things will work out, now I believe - just a matter of time and stategy [we did not have to sue for the special contract - my boss was able to talk to the VP of the insurance company and persuaded him to OK our request. And to this day she still thinks that I should have sued my family doctors.] I hope (and believe) your situation will be taken care of soon. (It's a good sign that your oncologist is working on the appeal.)

[chicagoetc]

Sheila,

Is your oncologist advocating for you (i.e. talking to the insurance company)? Or does that not work?

Melanie

[SoCalGal]

I get herceptin and avastin thru genentech patient assistant programs. I have no idea why or how blue cross pays for tykerb. They turn down everything else. I would call Tykerb cares and ask about assistance programs. There are many who take only (4) pills not (5) so if you can find four or five of these sisters to send you their extra pills you'd be in business. It is so disheartening to be turned down for treatment options. My turn down letters now include phrases like, "salvage treatments have not been shown...". Salvage! Like I'm a junk yard. Sigh...

[Lani]

fresh off the press article--perhaps will help your oncologist with your appeal. Next to last sentence shows those who have previously received capecitabine had shorter DFS and OS when given the lapatinib/capecitabine combo than those who had not.


Ann Oncol. 2009 Oct 8. [Epub ahead of print]

An open-label expanded access study of lapatinib and capecitabine in patients with HER2-overexpressing locally advanced or metastatic breast cancer.

Capri G, Chang J, Chen SC, Conte P, Cwiertka K, Jerusalem G, Jiang Z, Johnston S, Kaufman B, Link J, Ro J, Schütte J, Oliva C,Parikh R, Preston A, Rosenlund J, Selzer M, Zembryki D, De Placido S.
Department of Medical Oncology, Fondazione IRCCS Istituto Tumori, Milano, Italy.
BACKGROUND: The Lapatinib Expanded Access Program (LEAP) was designed to provide access to lapatinib plus capecitabine for HER2-positive metastatic breast cancer patients who previously received an anthracycline, a taxane, and a trastuzumab and had no other treatment options. PATIENTS AND METHODS: LEAP opened globally and enrollment continued until lapatinib received regulatory approval in each participating country. Patients were assessed for progression-free survival (PFS) and overall survival (OS) and monitored for serious adverse events (SAEs). RESULTS: As of 30 September 2008, 4283 patients from 45 countries enrolled in LEAP. The median treatment duration was 24.7 weeks. The most common drug-related SAEs were diarrhea (9.7%), vomiting (4.3%), and nausea (2.4%) and were mainly grade 3 or higher. The incidences of special interest SAEs were decreased left ventricle ejection fraction (0.5%), interstitial lung disease/pneumonitis (0.2%), and serious hepatobiliary events (0.4%). This safety profile is consistent with the overall lapatinib program. The median PFS and OS were 21.1 [95% confidence interval (CI) = 20.1-22.3] and 39.6 (95% CI = 37.7-40.7) weeks, respectively (n = 4006). Subgroup analysis showed longer PFS and OS in patients who had not received prior capecitabine. CONCLUSIONS: These results demonstrate the safety and efficacy of lapatinib in a broader patient population compared with a clinical trial.PMID: 19815649

[TSund]

Is there a neratinib trial for stage 4 persons?


TRS

[Rich66]

Sounds like there are ways to get H/T alone. But I also wonder if there might be synergy between Tykerb and Xeloda that wasn't exploited in previous use. And it seems to be more and more established that cancers continuously evolve..meaning Xeloda might work again now. But..I think you were trying to stay with T/H so you would be positioned for upcoming TDM1?

[Sheila]

Appeal denied. Joe, I dont qualify for the trial in Chicago at Univ of Chicago...more than 2 prior chemos. My onc. was working on the appeal until late Friday, then today, denied again. I contacted Cancer Legal Resource Center, they are looking into it. Called Tykerb cares and still no response, so back to square one, and now 1 month since any Rx except Herceptin. It wouldn't bother me so much but the lump in the side of my neck truly is growing by the day, and it pulls and hurts to turn my head.
On the bright side, my little Grandaughter Jasmine, who many of you may remember, is going to Disney World in 6 days as her wish from Make a Wish Foundation.... she will be 13 in 2 weeks...so funny that she is very tiny and wears a size 4-5 in childrens, but her head is very small and we had to get a newborn winter hat to fit her tiny head (cranial synastosis)...and it had to be one that looked like something a teenager would wear! When she was nominated for Make A Wish by her Dr., they asked her if she could go on a vacation anywhere in the world, where would she want to go...her answer was to Grandma Cocoa's house..( that is what she calls me)..needless to say, that made my day, my year, my life! She is truly proof that miracles do happen!

[Mary Anne in TX]

Ok, I decided! You take the bestest pictures with grandkids on the planet! She's wonderful and oh, so lucky to have her grandma cocoa!
Surely do hope someone kicks your OK for Tykerb in high gear for ya! ma

[Unregistered]

What an awful experience! Until you get the insurance issue ironed out, why not just have your doctor presecribe Xeloda and Tykerb, if that would satisfy the bean counters? You don't even need to take the Xeloda, if he does not think it is advisable. At least you would be treating the cancer instead of waiting. This seems like an easy, temporary fix.

Jill

[Darlene Denise]

Shelia: Would it be worth dropping the Herceptin, for now, going with the Xeloda & Tykerb to see if you get a result? Some gals get remarkable results on just the Tykerb Xeloda, you may be one of them. Continue the battle in the meantime and hopefully get what you want. If Tykerb Xeloda doesn't do the trick alone then maybe that could be additional info to support another appeal. Remember biological agents usually work better with a cytoxic agent which is probably why they don't want to approve the Herceptin Tykerb only combo.

As I understand it, you can always go back to Herceptin and it will work as well as when you left it.

Just some thoughts, any other chemos you are willing to try with Herceptin instead? Perhaps reserving Tykerb for use in case of brain mets? (I have them and I highly unrecommend them. ) Hope you never do. I think even in the next few months data will begin emerging supporting more widespread use of Tykerb and you may have an easier go of the approval then.

Hopefully TDM-1, Super Herceptin is around corner for all of us!

I am on Tykerb Xeloda and Herceptin for brain and liver since June. It's been a tough combo for me with many side effects and dosing modifications. My modest dosing is helping the brain but the liver is still an issue. Seems the Xeloda is what is needed to shrink the liver lesions so I just upped the dose this week.

Don't let this frustration rob you of good Grandma time and there seems to be other options, maybe this door isn't opening for a reason? Like you, I always still want to know the damn reason!


I'll be hoping you get what treatment you really want and are most comfortable with.

Wishing you well...Darlene

[Lani]

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.

[chrisy]

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.

[Unregistered]

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

[alicem]

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

[Sheila]

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.

[IRENE FROM TAMPA]

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.

[Unregistered]

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?

[hutchibk]

have you told them that Medicare pays for it?

[Brenda_D]

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.

[alicem]

Excellent idea Brenda!!

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

[chrisy]

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.

[Sheila]

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~~~

[Carolyns]

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

[Brenda_D]

Sheila, what can we do to help you?

[TSund]

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

[StephN]

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 ...

[Sheila]

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.

[Mary Jo]

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

[tricia keegan]

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

[DanaRT]

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

[hutchibk]

haha Dana. Great idea.

[Pam P]

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

[Sheila]

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!

[Mary Anne in TX]

I love the plan of action!
Still believin' ma

[TSund]

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?)

[Unregistered]

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

[whatz]

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.

[DanaRT]

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.

[StephN]

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 ...

[michka]

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

[TSund]

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?)

[Karen Wheel]

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

[Jackie07]

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.]

[Karen Wheel]

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

[Carolyns]

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

[hutchibk]

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.

[IRENE FROM TAMPA]

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

[TSund]

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

[Chelee]

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

[hutchibk]

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!

[StephN]

Dear Sheila -
How goes the saga today??

Hope things are falling even better into place now that you got over the main hurdle.

Big cyberhug!

[Sheila]

Steph
I have my appt. for next week to see about the T-DM1, they already have my records...I am excited.
On a sad note, by Uncle who lives in Shelton,WA that I used to go see, passed away at madigan Army Hospital, funeral tomorrow...so sad, this is my Moms younger brother and she is too sick to go.

[Mary Anne in TX]

So sorry about your uncle, Sheila!

[DanaRT]

Much relief...doors are FINALLY opening~ you may even have choices!!! I am happy to read your latest post.

Very sorry to read your uncle passed. Good-byes are sad.

My favorite line from Hope Floats--"Beginnings are scary, Good-byes are sad. It's the middle that counts the most."

Much Love,
Dana