HELP!!!!!! Pertuzumab denied by insurance! iN PANIC MODE AND DON'T KNOW THAT TO DO
 

I've not even posted my bad scan news, but the new plan was to be Herceptin, Taxotere! herceptin. I just got am email from my onco that my insurance has denied the pertuzumab because it was only approved for first line. This has been my biggest fear.

They also tried to deny the Herceptin until it was pointed out I am already getting it!

So I need to do something to appeal this ( the doctor is as well) but regardless, she doesn't know if she will have anything to treat me with on Tursday.

My insurance is Anthem Blue Cross of CA.

I have already stopped breathing, which I know is always my advice to everyone.

Anybody having specific experience in how to appeal this stuff, I'd love to hear it.

Re: HELP!!!!!! Pertuzumab denied by insurance! iN PANIC MODE AND DON'T KNOW THAT TO
 

breathe Chris...please read my post in H2B...lots of prayers....and people behind you

Re: HELP!!!!!! Pertuzumab denied by insurance! iN PANIC MODE AND DON'T KNOW THAT TO
 

Boy, this is rough stuff, Chrisy. My heart goes out to you. I did have to fight a couple crazy insurance denials (much less of a big deal than yours--just a pain to do when they were dening items covered by my plan) with a different Blue Cross/Shield that did work out for them to pay afterall with Dr documentation and an appeal process.

Tomorrow morning first thing how about you or a family member giving Blue Cross a call and get the ball rolling ASAP. You might be assigned a nurse case manager (or acquire one) who can help expidite this. I don't have one but some people find them helpful and I think you can request one when you have cancer. Does your oncologist's office have advice or know next needed step on their part and yours? I wonder if the drug company itself has help for those without insurance coverage?

Sending hugs and prayers your way,

Paula

You are right about the breathing. Maybe a walk in the fresh air will help with that--exercise can help us to think with greater clarity when under stress too.

Re: HELP!!!!!! Pertuzumab denied by insurance! iN PANIC MODE AND DON'T KNOW THAT TO
 

Hey Chris. Yes breathe! Aren't there a few insurance people on this board? Seems like something like this occurred several years ago and someone helped her know the wording to get approval. Maybe my head is wacky. But it seems you need an "inside person" to lead the charge. Could you start a thread that says you need help from an insurance person on the board?
Chris, I'll be praying for ALL things to fall into place as quickly as possible so that you can find some peace of mind. Tons of love and prayers headed your way. ma

Re: HELP!!!!!! Pertuzumab denied by insurance! iN PANIC MODE AND DON'T KNOW THAT TO
 

I'm not sure what this means, but I thought maybe it could possibly help- it's from the Genentech website-

"In addition, Genentech plans to open an Expanded Access Program (EAP) in the United States to provide, under certain circumstances, people with HER2-positive mBC access to trastuzumab emtansine while the company seeks regulatory approval."

http://www.gene.com/gene/news/press-...etail&id=14147

Re: HELP!!!!!! Pertuzumab denied by insurance! iN PANIC MODE AND DON'T KNOW THAT TO
 

First, back away from the ledge! Next, breathe! Breathe some more...Got to have your wits about you if you will be doing battle. We know there is alot of information and experience on this board and people will be stepping up with suggestions and advice. Does your treatment facility have any sort of patient advocate service?
Mostly, keep the faith.

Re: HELP!!!!!! Pertuzumab denied by insurance! iN PANIC MODE AND DON'T KNOW THAT TO
 

Well, crap on a crapstick (thanks for the expression Brenda).

Thought you were having shrinkage last I heard, and now THIS! Brings me up short.

Having already done T-DM1, I know you were looking toward Perjeta/Pertuzamab.

All I can do is pray hard and then pray a little harder that you can ride this bull into the corral.

Adding a measure of calm to your tattered wits, as well.

Re: HELP!!!!!! Pertuzumab denied by insurance! iN PANIC MODE AND DON'T KNOW THAT TO
 

Prayers. Hang in there. Things will turn around.

Re: HELP!!!!!! Pertuzumab denied by insurance! iN PANIC MODE AND DON'T KNOW THAT TO
 

I think Mary Anne's advice is good. Start a thread looking for others' solutions to this (and insurance people). Also, what about reaching out to some of the major docs out there (the ones always at SABCS- you have probably met many) for how they have handled this problem for their patients (or perhaps others on the board can ask their physicians as well). Try hard to breathe and think of all options for getting answers/advice. Sorry to you have to deal with this. I know it is scary and very taxing on one's brain and soul.

Re: HELP!!!!!! Pertuzumab denied by insurance! iN PANIC MODE AND DON'T KNOW THAT TO
 

Chrisy,
Chrisy, Chrisy, Chrisy! You are a good friend to Genentech! Call them RIGHT NOW! We have to find a way to get it to you. What do we have to do? Get on YouTube? Dance naked on the Empire State Building? Ah, election year...that brings up some ideas...Really!
Please PM me.
Love you and hang in there,
Karen

Re: HELP!!!!!! Pertuzumab denied by insurance! iN PANIC MODE AND DON'T KNOW THAT TO
 

Thank you, friends, for the suggestions and prayers! I must have started to breathe sometime during the night because, well, I woke up. Thank God.


Turtle - great idea, wrong drug, but I like the way you think

KarenZ - dr Rugo was the onc who had the unpleasant conversation with the insurance co. I guess I'm the first patient not first line MBC she's tried to get this for, at least w/my insurance co. I know of one other person ( study buddy) she is planning this for, but she has the option of staying on study to wait things out. I don't so I guess I need tonight hard!

KDR - I emailed Sonali last night; she gave me some phone numbers to try at Gene. But I agree, the least they could do is give me some free samples! I will send you a pm

Mostly, I think that whatever I do, and I WILL do everything I can), Miracles, whether right decisions or new medicines come from only One source, so I'm boldly asking for bold prayers to cicle the globe, for me and for my Her2 family

Much love,
Chris

Re: HELP!!!!!! Pertuzumab denied by insurance! iN PANIC MODE AND DON'T KNOW THAT TO
 

Chris,

How infuriating and upsetting! If you get your medical insurance through your job, and your company is a decent size, you might also try having your HR department contact the insurance company. This worked well for me when my insurance company denied an aspect of a surgery I already had. They worked it out without my needing to appeal.

I know others have had this issue with Pertuzumab. There may have been people posting on bcmets.org or breastcancer.org (stage IV thread) with their experiences. A few have succeeded in getting it in the non-first line setting.

Good luck!! With you and Dr. Rugo battling them, the insurance company doesn't have a chance.

I am so sorry about your scans.

JB

Re: HELP!!!!!! Pertuzumab denied by insurance! iN PANIC MODE AND DON'T KNOW THAT TO
 

You WILL get it...you WILL get it...a few posts from now, that's what I expect to hear...
Karen

Re: HELP!!!!!! Pertuzumab denied by insurance! iN PANIC MODE AND DON'T KNOW THAT TO
 

Chris,

There is a thread on breastcancer.org entitled Perjeta/Herceptin/Taxotere on the stage 4 forum.

Maybe the experiences of those ladies can help you.

I sure hope some help finds you.

Caroline

Re: HELP!!!!!! Pertuzumab denied by insurance! iN PANIC MODE AND DON'T KNOW THAT TO
 

miracle needed.....check!
I'm on it! Praying like crazy!

Love and hugs...glad you started breathing again...
Denise

Re: HELP!!!!!! Pertuzumab denied by insurance! iN PANIC MODE AND DON'T KNOW THAT TO
 

Chrisy,

Great suggestions on pushing / pushing for perjeta. The idea of shiny tap shoes came to mind.

Remember, taxotere is a powerful drug combo that you know works well with herceptin. Remember that as you work through this mess, you won't be completely "naked".

As always, blazing trails for us all. Sorry that we can't be of more direct help. Just know that I am sending cross country, full power, positive thoughts.

Re: HELP!!!!!! Pertuzumab denied by insurance! iN PANIC MODE AND DON'T KNOW THAT TO
 

Chrisy,
You have many prayers being said here for you.
Sending you a huge hug.
Jean

Re: HELP!!!!!! Pertuzumab denied by insurance! iN PANIC MODE AND DON'T KNOW THAT TO
 

Hi Christy! On the insurance side you need to call anthems member service. Tell the customer service rep that you want to file for an appeal or grievance. They have to respond to your appeal within a few days maybe a week as the state of ca is very strict on the time frame.I am not sure of the exact time frame. They will ask for proof of medical necessity . Since perjeta is approved for 1st line treatment you can't overrule it unless its medically necessary. I think Sheila got hers as medical necessity. You need to check with your oncologist how to word it. You might also need a lawyer hopefully you don't have to go that route. Meanwhile if you can get sample from Genentech it would be great. Good luck with everything!

Re: HELP!!!!!! Pertuzumab denied by insurance! iN PANIC MODE AND DON'T KNOW THAT TO
 

Chrisy,

I'm so sorry the darned insurance is causing you this grief. They are certainly good at causing us grief and unneeded stress in our lives. This just seems ridiculous. I mean if you're Her2 + and metastatic, and the drug is shown to work, then seems like a no brainer to me.

What about the Perjeta website, http://www.perjeta.com/patient/index
and the link to Perjeta access solutions. Maybe some info there.

Hang in there, someone has got to come to their senses on this one, and do the right thing.

Kim

Re: HELP!!!!!! Pertuzumab denied by insurance! iN PANIC MODE AND DON'T KNOW THAT TO
 

So many of us long term stage IV's find ourselves in limbo once again....

When we were diagnosed back 8 or more years ago, we were early stage, and told we WERE NOT eligible for Herceptin..as it was only given to Stage IV ..the door was shut in our face.....and so we waited....and many of us recurred, and THEN we WERE eligible form Herceptin.

Now, they come out with a new miracle drug, Perjeta, for metastatic breast cancer.....and as our hopes rise , we are again told NO...we are NOT eligible...we are not newly diagnosed metastatic...basically for better words, we are to far down the metastatic road. Again, the door is slammed shut, no room for us who are the most desparate for this drug.

TOO EARLY.....TOO LATE.....WE are NOT asking for Super Bowl tickets, we are NOT asking for hot concert tickets....we are asking for our LIVES!!!! Seems to me we have been getting the short end of the stick from the beginning.....maybe, if we had gotten the Herceptin from the get go, we would not be begging for the Perjeta!

Those of us asking for help in getting this drug, have been your. Est customers for years...can you hear us....can you give us a break????

yes, I miraculously got approved through medical necessity.....basically this or Hospice....and my insurance relented and approved the drug ......but our lives should NOT be dictated by the damn insurance companies.....

many prayers being said that this will be available for all who need it....it's cheaper than Herceptin, if it's approved, it should be available!!! Stay strong Chris....I see Perjeta on your future..

Re: HELP!!!!!! Pertuzumab denied by insurance! iN PANIC MODE AND DON'T KNOW THAT TO
 

I don't have any wise advice about how to get the Perjeeta. I agree with everything Sheila said. Im just sad..sad everything has to be so difficult, sad that you have to fight so hard to get what you need to survive. I know you will get the drug, because I have seen how hard you fight, and I know you and your docs will find a way. I can give you a hug, and I can't give you any meaningful advice, but I give you my prayers and all the positive energy I can muster.

Re: HELP!!!!!! Pertuzumab denied by insurance! iN PANIC MODE AND DON'T KNOW THAT TO
 

Chris I have no advice sadly but I'm horrified you're being denied a drug that may help you,this would'nt happen here in Ireland and I so hope you find a way round this and will see if any of my friends in the U.S can help!

Re: HELP!!!!!! Pertuzumab denied by insurance! iN PANIC MODE AND DON'T KNOW THAT TO
 

Dear Chris

It shouldn't be so hard but you are stronger. You and your oncologist need to appeal - both of you. Over and over again if necessary. I do know one thing, the greasy wheel does get the oil even though it might take awhile. Go through their process and call, call,call - everyday - all the time.

I did this for my daughter and although not life threatening, they relented and gave her treatment (took about 2 months and 2 doctor interventions) but it did work. You have a local onc too who can join the party. The insurance companies just want to know how serious you are (duh - like we aren't if we have cancer). It's alot to ask when you are having chemo (use that sweetly when talking to them - I used "my child can't breathe and I never got angry with the messenger - cry if you want but don't get angry). I know your team will secure it for you. Use every doctor you know

Re: HELP!!!!!! Pertuzumab denied by insurance! iN PANIC MODE AND DON'T KNOW THAT TO
 

Chrisy I have a friend working for the insurance company but not this group but she sent me this message ! work for a major health insurance...a competitor of Anthem. When you say "approved", is it on their Anthem's approved drug list, or just a legal drug? Mine was not on their approved drug list, but a couple of convincing calls later my insurer allowed it. My guess is that it was not on the approved list because it was insanely expensive."

I hope your Onc can help!about a minute ago · Unlike · 1

Re: HELP!!!!!! Pertuzumab denied by insurance! iN PANIC MODE AND DON'T KNOW THAT TO
 

Yes, Chrisy, Breathe. In. Hold. Out. And again and again. Becky is wise. Never lead with anger. Befriend your person on the other end of phone.


I searched for you and came up with Perjeta Access Solutions (below). I do know that when my insur co denies me my husband gets on the phone. We've learned that sometimes, believe it or not, you have to realize you're talking to a person who is a robot or has the IQ of a penny and you just say, Thank you and hang up. Call right back and you can get a real human who becomes hell-bent on helping you.

The insur co will tell you exactly what is required for you to appeal. A letter and/or a call from your doc. Sometimes sev calls from your doc. The squeaky wheel thing is key.

Remain calm. Know that we are sending all the necessary positive energy you will need to get through this emergency. Help is on the way.

In. And hold. And out. Do not stop breathing... Keep thinking of Yosemite and your favorite spot. Go there (in your head). Recapture the feelings you had before. Bring them to you in this moment.

Much love,




PERJETA Access Solutions®

http://www.perjeta.com/images/access-solutions-logo.png PERJETA Access Solutions helps to resolve specific access and reimbursement issues for individual patients every day. Our dedicated Specialists help bring patient treatment and practice solutions together.
Our staff can help:

• Resolve benefits and coverage issues
• Find co-pay assistance for underinsured patients
• Provide free medicine for uninsured patients through the Genentech® Access to Care Foundation
• Individualize services to meet patients' specific needs

To learn more, please contact your Genentech Clinical Oncology Specialist or call 1 (888) 249-4918 (weekdays 6AM-5PM PST), or fax 1 (888) 249-4919.
Additional resources

• Get Access Solutions information
• Download list of distributors

Andi

Re: HELP!!!!!! Pertuzumab denied by insurance! iN PANIC MODE AND DON'T KNOW THAT TO
 

Chris,
Another thought, just to double check. I was initially denied when I tried to see if Herceptin + Tykerb would work. I called for a couple of days and just couldn't get traction. Neither could my Dr.

I was still working (which I think you are), so I walked into HR and said I needed their help immediately to get a direct contact and help me work this through the process. It was only when my company got involved that I felt like someone even noticed my faxes. (I had images of a fax machine just feeding into a trash can).

Just a thought.....Lori

Re: HELP!!!!!! Pertuzumab denied by insurance! iN PANIC MODE AND DON'T KNOW THAT TO
 

Check your prescription drug benefits and see if you can get it directly from them and bypass your insurance.

Re: HELP!!!!!! Pertuzumab denied by insurance! iN PANIC MODE AND DON'T KNOW THAT TO
 

I'm praying you get it covered soon! Gods blessings to you!

Re: HELP!!!!!! Pertuzumab denied by insurance! iN PANIC MODE AND DON'T KNOW THAT TO
 

Thanks for the support. We are nor giving up this fight, and true, we shave to be strong and put someone on my side. Sheila said it as "you have to put it on their heart". Punching them in the nose won't do that, neither will coming from weakness.

I spent all day Wednesday researching, (including Perjeta access solutions) and am continuing to gather more ammo.

We have an interim plan for. Chemo....but wait! No chemo for Christika until the horrifyingly painful infection (hopefully not a full on blood infection) inher leg is resolved. I will post this sideshow which is now on center stage on a separate thread.

Again, thanks for the love, wise suggestions and support.

Cris

Re: HELP!!!!!! Pertuzumab denied by insurance! iN PANIC MODE AND DON'T KNOW THAT TO
 

Someone on this board or inspire went thru abattle w/ aCalif. ins co earler this yr. her screen name was emilia i think ? It was either t dm-1 or pert that was being denied. she appealed to calif state ins board , and won. Go Public ! I feel like this is the yr for protest against all thes bureaucracies, ins co's included !

Re: HELP!!!!!! Pertuzumab denied by insurance! iN PANIC MODE AND DON'T KNOW THAT TO
 

So agrees with every word Sheila wrote. DAMN those insurance companies who act as if they are God and can dictate what's best for us...or not! Now, all anger aside......I also agree with what you Chrisy said ..."miracles or new medicines come from One source". God is wayyyyyyyyyy bigger than your insurance company AND wayyyyyyyyyyyy MIGHTIER! He can and WILL do it. Prayers being sent up all around the globe for you dear friend.

Mary Jo

Re: HELP!!!!!! Pertuzumab denied by insurance! iN PANIC MODE AND DON'T KNOW THAT TO
 

I think the woman I'm thinking of goes by " elaina ", on this board or Inspire. Perjeta is being prescribed off protocol, or thru comp use in some parts of the country . Why not in Calif. ?

Re: HELP!!!!!! Pertuzumab denied by insurance! iN PANIC MODE AND DON'T KNOW THAT TO
 

Phil, if you could be more specific about where in the US perjeta is available for compassionate off-label use perhaps Chrisy could use ANGEL FLIGHT to get there.

Re: HELP!!!!!! Pertuzumab denied by insurance! iN PANIC MODE AND DON'T KNOW THAT TO
 

I believe it has more to do with insurance than where you live....I do know that out of 15 women in Chicago where I go, only myself and one other women are getting it. Theyndid say we have phenomenol insurance....so if it is denied for some, it has to be insurance....even coverage on other items is so different....my insurance covered wigs and my sisters did not....I had to,pay for Neulasta and Neupogen shots...30.00 each and she did not...we both had blue cross blue shield but different plans.
My oncologist got Very involved.I have given Chris all the info for her Dr.

Re: HELP!!!!!! Pertuzumab denied by insurance! iN PANIC MODE AND DON'T KNOW THAT TO
 

I also think it has to do more w/ individual docs, hospital irb's, ins. and different state regs. It has been given off protocol at farber here in Boston. caes by case basis . I have heard that in Mass. ins co' s are required to cover off protocol. Comp use was granted in Fla for darlene gant ( FB, youtube ). That was before FDA approval for first line use only. That conditional decision , and its effectrs on late stage iv pts, must be publicized. I would go to media. report the ins co to the state board . and in the media .