Insurance Companies - BAD People at a BAD Place

[NYgirl]

Well as of right now I have no Peg for tonight.  I went to pick them up and the pharmacist said "that will be $1760 for the Peg and Riba".

huh?  I've been on the stuff for 53 weeks (this is 54). When I decided to extend treatment I informed my doc right away - I knew I had been approved through September and needed to have that extended through February.. They have sent TWO approvals to the insurance company!

But it is still NOT approved.  Of course I'm working on getting this done today. Wish me luck.

I just wanted to post it up in case anyone ELSE decides to go for the 72 weeks.  I figured since the doctors (two) had approved me for the extended treatment the insurance approvals would go straight through.

No such luck.

I thank GOD that I went down a day early to get my meds.  I almost didnt.  I learned this lesson the hard way during treatment in the beginning.

It's just CRUCIAL we get them a week in advance - I need to follow my own advice.  I should have this time like I ALWAYS do but really thought I had one more box in the fridge (I am one Peg short - it jammed - and I forgot that because of it I used an extra).

DONT TRUST THE INSURANCE COMPANY CAUSE THEY WILL SCR#W YOU OVER EVERY SINGLE TIME THAT THEY CAN - AND THEY DONT CARE AT ALL.

[mycoldfeet]

I had same problem, someone wrote that if the Doc writes the script they will pay, well I didn't want to argue, but Blue Cross said the FDA standard tx is 48wks and the FDA isn't keeping up with explosive studies and changes going on. In fact they said the only approved tx for relapsers was interfergon and riba, and 72wks in any way was "experimental" and would not pay, my Doc called Pegassist and faxed his script and filled out the paperwork and I filled in my part and they send me a month at a time overnight mail in a coldpac free. riba too. 72wks and all pegassist wanted was the refusal letter from insurance.

[Lady E]

I still have next wk's shot in the fridge & a weeks worth of Riba, but I called in my rx today. At least if something gets screwed up, I have a week to Git Er Done. I'm actually wondering why Im still able to fill my script which was originally written to me from my old Doc?? I honestly think that my last doc & his staff are too stupid to have thought of retracting the RX. (not really sure what is usually done with an existing script when drs are changed)
I'm planning a week ahead JUST INCASE a light bulb goes off over at my old drs office & they realize I'm still using their script. (not likely to happen tho) LOL
ok..Im shutting up again

[Kalio1]

I wish I was closer to you. Email me at my name at coxdotnet but it will not get there until at least Mon. because I'd have to send it by 10am for Sat. delivery. Better late than never.
I have a month extra. Maybe you could charge it and then work it out with the  ins. co and get reimbursed later? I'd be freaking out and I know you must be! I am so sorry, you don't deserve this! I'd be on the phone until I got that approval today, get to the supervisor or the supervisors' boss trying to solve this, dont bother with an underling and their BS. The probably have no authority to ok it.
I had some resistance from Comitment to Care over the extension to 72 weeks too. My doctor had to submit the scrip a couple times an they made me go through a few different reps and finally they said OK. I have not had to deal with the insurance shysters who try to control our medical care so far because even though I am "fully insured" they resisted up front paying their part and CTC was easier to deal with and I was too sick to fight. I bet I have a fight ahead when the 72 weeks are done to stay on it like the doctor wants me to. Please keep us posted today as to your progress with this and give 'em all you got!

[rochammer]

nygirl

Your one strong woman for sure! You will most likely get it straighten out today but if you can’t you can get just one shot to get you buy you do not have to buy all 4. I had to put some meds on c visa until the insurance caught up when it did they took the charge off my card.  I only took a couple of days but today is Friday so thinks may move a little slow

Rock

[NYgirl]

The insurance company just denied paying for my medicine.

So I guess I'll be going off treatment as of tonight after all.

I'm NOT going to let my poor mother pay for it like she is trying to do. They don't have ANY money - they just don't.

I don't understand. TWO doctors and one of them is the world specialist have approved and said I need this medicationn but insurance says sorry - you're off treatment.

So now when it comes back they can pay for me to RETREAT all over again.

[jmjm530]

You might want to give Dr. J's office a call now, just in case. As a principal trial investigator, my guess is that he has a decent stash of both Peg and Riba available for emergencies such as yours. Please keep us informed what is happeing and perhaps someone here has some xtra to send you. Unfortunately, these things always happen on a Friday.

You're taking Peg Intron -- not Pegasys -- if I remember correctly.

-- Jim

[jmjm530]

Look, don't give up yet.

I don't know about your insurance company, but in general what you're initially told on the phone isn't in stone.

Again, call Dr. J's office and explain your situation. They probably have a lot more experience with insurance companies regarding extended treatment than your doctor. Hopefully, since you're in a sense of patient of theirs, they might go to bat for you or assist your own doctor in that regard. But I'd get on it right now because it's Friday.

When you get off the phone with them, you might call the Peg Intron Assist 800 number from their web site. I believe they might step in when the insurance company stops, especially if your doctor is batting for you. Worth a call.

Good luck!

-- Jim

[Kalio1]

Get them to fax you the letter of refusal. You need that. Then call Commitment to Care, maybe they will pick you up. Did you talk to the supervisor? I'd call Dr. J's office if it was me. Did you call your doctor? they can presure the ins. company too. Keep at them!

[Lady E]

NOOOOOOOOOOOOOOOOOOOOOO!!!!!! how COULD they????? The BASTARDS!!
I AM SO sorry you have to go through all this today!!!!
You will find a way! (((HUGE HUGS))))
We love you!!

[GrandOak]

Bah humbug on Bean counters!  I would tell them to have their executives take one less trip to the Caribian this year at the companies expense

[GrandOak]

Bah humbug on Bean counters!

I would tell them to have their executives take one less trip to the Caribbean this year at the companies expense and that should pay for your meds.  Better yet, ask them if you can come on down and bleed on them and see if they stick with the FDA 48 wks if they need 72 wks.

I would be sending copies of their rejection letter along with your doctors approvals to the FDA, Dept. of Health, and every congressional person involved with insurance and medical regulation.

[NYgirl]

my mother refuses to let me go off and is going down to pick up the meds and pay cash no matter what I do.  She said she can't live with it - and we are going to appeal.

They told me that I need Dr. J. here and this is why I went to him. As the expert in this disease he advised that I NEED six more months and he needs to write a letter and THat will count big time.  Dr. K said insurance companies only approve 48 weeks - and this is why he wanted me to go to Dr. Jacobson because he has enough weight. That's what he meant all along that I didn't understand.

So..............I'll pay my mother back the money a little at a time and have to take the meds.

To be 100% completely honest, I sort of wanted to use this as an out so that I could stop this treatment once and for all and take my chances. I mean you know.....

I'm so upset and so confused. I HATE insurance companies. I mean so I stop with only a 48% chance of success? Then I have to treat ALL OVER AGAIN - won't that cost MORE Money in the long run?

SO ridiculous.

[NYgirl]

Once again you are right.

[jmjm530]

Great that mother came to the rescue.

Meanwhile, if your phamacy works like mine, they might refund the money if you come up with an insurance approval within so many days. My pharmacy did that several times.

I'd still call Dr. J's office to see if they can help either directly (give you the meds) or with the Peg Intron Assistance program.

What about the Procrit? Are you still on it and how much do you have? I believe Procrit has an assistance number as well.

-- Jim

[jmjm530]

NY: Once again you are right.
------------------------------
What? That Shakira lusts my body ? Did you call Dr. J's office? I don't think they'd leave you in the lurch.

[MrsOckert]

I have four weeks of Peg-Intron and about a months supply of riba left over.

I will ship it to you at no charge.  Let me know asap if you want it.

you can reach me at myscreennameatyahoodotcom

[honey11]

Wow,,,,Is that ever sorry and one less thing you need to deal with! Sorry to hear this!  Hey,,,we all have been known to scramble behind the scenes for something just like this situation!  There is always some riba etc floating around in someones household!  Hope this gets resolved for you!

[merlino]

So sorry your going through this! insurance companies are terrible. All they see are $ instead of people. I truly hope it all works out.

[avidreader]

Yeah, that's what happened to me at 52 weeks and with a kid in college there was no way I could pay but was over income of any of the assistance programs. I had pretty much had it with treatment at that point and I gave up. I still have about three weeks of Riba left and I'm in the Albany NY area--if you want I'll overnight it to you. I know what you mean thought--at one point I told the appeals person at my insurance company that I was looking forward to relapsing so that they could pay for more treatment and/or a liver transplant. As if!

[can-do-man]

E-mail me

[Kalio1]

I think it is criminal! If your doctor ( or doctors in this case) want you on the meds and feel it is the best for your medical care what audacity for the insurance goofballs to deny it? They are not doctors! It just burns me up these office workers can be in control of your health! I am sure their "formulas" have caused many people health problems. They are stupid too, if you do relapse then they will be paying for even more drugs in the long run, it makes no sense financial or otherwise.
Doctors should be allowed to do their job without intererence from office help and formulas.
I sure hope they iron this out and reimburse you and your Mom.
I'd be curious as to what Dr. J says about this, I bet his office is very saavy dealing with insurance co. jerks.

[doglover_forgot password]

I had to write a Letter of Appeal for another medical reason a few years back.  The Insurance Company had to reimburse me for everything that I had paid.  If you need my letter as a template, I would be glad to send it to you. My mom actually wrote it since at the time she was a Grant writer.
Also, you should contact your State Insurance Commisioner and file a complaint immediately.

I am sorry to hear what you are going through.

Pam

[lab-rat]

What about getting samples from the drug co. through your doctor's office?  My insurance wouldn't cover treatment because my LFT numbers weren't bad enough.  My GI wanted me to get treatment so they offered to get free samples by filling out some paperwork for the drug co.  I ended up getting into the vx-950 trial and didn't need the samples, but that's another avenue you might want to pursue.

[NYgirl]

Jim yes I did contact Dr. Js ASAP.  I had to (of course) leave a message with the receptionist.  I am going to call back in an hour or so - I left them my home phone number so that if they call my mother can talk to them (because she is the one in the middle of all of this handling it for me while I am at work so I'm not yelling on the phone hysterically, you know me...my emotions go completely OUT of whack FAST!)

Doglover - I would LOVE LOVE LOVE a copy of your letter.  I know the doctors office SAID they are going to work on this but I would like to do it myself as much as possible so I KNOW it's getting done.

My parents do NOT have extra money whatsover and the guilt I am feeling that she laid out that cash.....while I can understand because I am her daughter and I would do it for MY daughter - it doesn't make it any easier. I am so guilty and so mad right now I'm literally ready to explode.

They'd BETTER continue to pay for my Ambien and Paxill and stuff or I'm going to go BALLISTIC!

HOW CAN THEY DO THIS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

It's like something on television (you know Law and Order where the child with leukemia is turned down for chemo and the dad gets a gun and blasts them or something LOL).  I DID see that episode!  ;)

[FlGuy]

Deb,

I hope this all gets worked out with as little angst and expense as possible. I pity the fool who might get between you and the meds..

All,

This is a pretty good lesson for us all. Insurance companies seem to work within 'accepted guidelines' when they consider coverage for these expensive meds.  So, if your doc is going 'off label' there may be extra hoops for you and your docs to jump through. I'm dealing with it right now. After a consult with a liverhead my tx doc is rx'ing re-treatment for 48 weeks (geno 3a) and as Lucy Ricardo would say the doc "has some splainin' to do" which includes the consult notes from the liverhead, dx, labs, and other stuff. I don't necessarily blame the insurance co, they are trying to control costs which eventually make their way to all of us.  Even though we pts want to get through and done, we have a responsibility to make sure the entire team, which includes insurance, has their collective acts together.  Not implying that NYG didn't do all the right things, we just need to make sure that everyone else is too.

[SlideJames]

Do you see NYGrl? Do you see how much you're loved?
You are my Forum Hero.

Much Love, James

[jmjm530]

Call Dr. J's office NOW and tell the receptionist it's an EMERGENCY and you want to talk to the doctor right away, or at least the nurse.

If they ask what the problem is, tell her that you're out of medication and need something today to hold you over. I'm sure he's got some extra Peg Intron and Ribavirin in the office. My doctor, who also ran trials, had plenty extra that he dole's out to patients in need.

-- Jim

[Myown]

Oh my God!! Oh man...this is nuts...I know that YOU will get things done, one way or another.

It's ashame...illegals are getting FREE health care and YOu as an AMERICAN have to go through this!!!

Ya know what,if you're not in the closet about hep, as I am, call Eye Witness News. If you call hysterical, they will probably be on your doorstep in a minute.

praying it all works out.

[merlino]

I think its wonderful your parents want to help you. I can't even tell mine I am sick.

[doglover_forgot password]

Deb,

I will be glad to send copies.  I am at work right now, but get off at 2:00 PM.  I will dig them out of my file cabinet.  How can I get them to you?  I don't know if we are aloud to do this, but I will anyway because this is important.  I can be reached at  ***@****     I have a scanner at home and can scan them and send them to you.

Pam

[Magnum]

Have you tried contacting the drug manufacturers? If they help you get your remaining dosage free, it will certainly be a feather in their cap, as well as great advertising and customer support. It's a smart gesture on their part, as they will probably hope you pass on to others. They may very well send you the meds if you call and explain to them what happened. They seemed very nice and cordial when I spoke to them... Worth a shot (no pun intended)...

Magnum

[NYgirl]

In case anybody else might need them
Schering-Plough, The maker of Peg-Intron, Rebetol, and Rebetron, has a "COMMITMENT TO CARE" reimbursement assistance program. Call 1-800-521-7157 to enroll.

Hoffmann-La Roche, The maker of Pegasys, also has a patient assistance program, Call 1-877- PEGASYS to enroll.

[painterlady13]

Deb,
Thank God for Mom's....  Insurance companies soooo suck.  when we decide to follow our doctor's advice with whatever TX he/she decides we need. The FDA needs to update their info and adjust for longer TX in people who do not clear the virus as soon as they expect.

My mom will help me if I end up needing her to aid with my COBRA.  My Doc did write my script for 3 mos worth of meds and with my INS I will be able to get mine for 2 mos co-pays instead of 3.  This will give me a chance to get COBRA in place before I run out (hopefully)  But even with COBRA and my co-pay's I will be paying out more than 500 a month just to stay on TX. But that is no where near the 1700 that you are being charged....  I hope you are able to work this all out. Take care
Nicki

[Tater-ToT]

Oh Gawd NY, I am sitting on the edge of my seat CRINGING For You.....As you well know this is like VIVID "Deja Vu" for me..
I feel for ya sweetie.... I REALLY DO!!!!

Just try to be persistant, calm....  & call those Peg folks IMMEDIATELY, so that you can get that paperwork started (just in case) .... Uggg... What a Nightmere!!!!

Where you Undetectable @ 12 weeks????
Because if sooo, In all reality you probably already have it beat.... Keep in mind that I am a fellow 1a/1b & regardless of same scenero with me I still achieved my SVR.... So Try to keep that chin up & keep possitive...

I know it's much EASIER Said Than Done too..... Soooo, Now Breath... & get back on that phone... you still have 4 hours to light fires!!!!

Keeping my fingers & toes crossed for you (& anything else I can find too) & Shooting up some prayers for ya too while I am at it (my list is starting to get Long)... LoL

Hang In There & Good Luck.... & Keep Us Up To Date With Whats Happening!!!
;)

[amommy]

I'm very sorry that you are stuck in this crappy situation.  Unless you REALLY TRULY want to be done, their is a way.  

I think Jim has had the absolute best advice.  I would bet money that Dr. J's office has some extra meds hanging around.  

Also, Commitment to Care should take you!  The income guidelines are very liberal.  As far as I know, they supply both peg and riba.  I have some extra riba if needed I'd be happy to send.

So, unless you want to stop, I think worst case scenario is you may have to take your meds a day late.  Good luck!  Keep us updated.

[susan400]

Here's a thought...  If they decide to flat out not approve any more of the Pegasys, get the doctor to write you a script for Infergen!!  Then, they couldn't say that you were extending treatment on the Pegasys, because you wouldn't be on the Pegasys.  I know, I know, you don't want to go on Infergen.  But, if worse came to worse, it might be a way around their rules.

Susan

[doglover_forgot password]

Hi Merlino,

I am sorry, too, that you can't tell your parents.  I only told my mom, husband, and old boss (my dad has cancer, so I don't want to tell him) I only told him because he makes medicines, and he said he would help me out by looking at the structures of any medicines that I would take should I decide to treat.  
I hope you are doing well.  

Pam

[NYgirl]

You guys are just making me cry.  I never knew how lucky I could be. People in the office here that overheard me are just like "oh...too bad" and you guys are pouring out your heart and souls. Waaaa. Waaaaaa.

Merlino - I am SO SORRY for you that you can't tell your folks.  Mine have helped me SO VERY MUCH with treatment. Of course they fully believe that I got this two years ago when I was transfused (well I COULD have hahahaah) - they tend to totally ignore the past and all the rehabs I was in ;)

I'm not in the closet but I'm not totally out either. For example one of the ladies here just said I didn't know you are on chemo what kind of CANCER do you have?! (People have NO tact do they?) and I said well I don't really like to talk about it but yes I'm on chemo - and she waited for me to tell her but I didn't.

If anything this whole experience has taught me to RESPECT other peoples privacy.  Now I worry that I seem too standoffish - even though it is hard NOT to ask a question like that lord GOD you get tired of it!

Isn't there any way that you can figure out how to talk to them about this?

EYEWITNESS NEWS WOULD BE HYSTERICAL SHOWING UP AT MY JOB.....I have a lot of guts but seeing that van pulling in the parking lot.............. hahahahahahahahahahahahaa

[jmjm530]

This post appeared on the J&F web site today:

" know there is a lot of late responders and relapsers out there (I'm a 1a relapser) who has opted to do 72wks of tx to improve chances of SVR. Just because your Doc writes a script for it does't make it so with most insurance Co's. They don't tell you but at 48wks you may be cut off without warning, My insurance (Blue Cross) and I'm finding out more use FDA guidelines that the approved tx is 48wks no matter what and 72wk tx is "experimental" and for relapsers the only approved tx is interfergen and riba 48wks if they approve retreatment at all. I was told they would cover transplant if needed a##es. I have cryo also so my Doc got me meds for that (which is the same peg/riba then I took my rejection letter and script and Doc filled out paperwork through pegassist and was accepted in a few days, now they send me my meds overnight in coldpac, months worth at a time for free, for 72 wks and to heck with Blue Cross and my co-pay. Just want y'all to be informed to get it together in advance and get approved for full 72wks or make arrangements."

[NYgirl]

WOW I can't believe you found that!

Is Peggassist for Intron? How do I go about getting Riba?

I think I have to get going - I'll fight with the insurance company but in the meantime since they have denied me...I will apply for the meds for free.  You are so wonderful - to hang my hat on false hopes would be so stupid.

I don't make that much money (although I make good money I live in the northeast so it's squat cause it's so expensive) and as a single mom I just can't see anyone saying no. One good thing about not having a lot of money.

Do you know what/who I contact how to get the forms?  You know everything else so ... once again I am back in the "HELP ME JIM" boat..........

Calling 72 weeks "experimental" is just plain retarded. They'd rather let me relapse, take a daily infergen, lose my job and go on the state so that they can get me, a SICK person off of the insurance.  Yet they cover ILLEGAL people when I've paid taxes all of my life.

Oh man. I dont need Riba for Rage today. No way.

HELP please!  I need to do these things WHILE I let Dr. J also help.  I have ONE MONTH because that is how much meds I am sure my mom bought (although Mrs. O has some intron that I will gladly take once we can figure out how to ship it). That will buy me a little bit more time perhaps.

[jmjm530]

Sounds like you got the emergency under control. Aren't "Mom's" great. LOL.

"Committment to Care" is definitely worth pursuing if you qualify. Like has been suggested, it seems you'll need an insurance rejection letter plus an rx and paperwork from your doctor -- but I'm sure you can get all that info on the phone.

Meanwhile, I'd work the Dr. J angle, and see if they help you with your insurance problems in case Committment to Care doesn't come through. They may also have some xtra meds they will give you.

Are you still on Procrit? If so, you'll have to contact Procrit
http://www.procrit.com/ and see if they can help out in the event your insurance doesn't come through.

-- Jim

[jmjm530]

Amommy: I would bet money that Dr. J's office has some extra meds hanging around.
-------------------
When the decision (week 2) was made for me to double-dose the Peg and up my riba beyond 1200mg/day, I turned to my doctor and asked, "Will I need another rx or something" ?

He left the room and literally filled my outstrecthed hands with six extra shots of peg and two months worth of riba. Still in shock, I think I said something like "do you have a bag or something". LOL.

Bottom line is that many docs who run trials have big stocks of medication lying around.  Some are drug company samples. Some trial leftovers. And some returned drugs from those finishing treatment.

In fact, I remember him asking me the day treatment ended if I could return any unused meds. I said, "sure", in about six months :) Smiling, he said something like "bad luck to hold on to them". I returned them six months later. LOL.  

-- Jim

[sfbaygirl]

So sorry to hear about all these hassles with ins. co. I would be freaking out too!! Just what we need while on these meds, more stress. I'm glad to see that you have this handled for now. You have gotten some great support and that is great! This sure is a wake up call for those that are extending. If my dr. had called in the script, I sure would have thought it was covered. How come the ins. co didn't tell you sooner that they were not going to approve the script? That sux to make you have to go through this panic.

I had a problem once with the ins. not approving the meds. Luckily it was a couple weeks before I needed them. The pharmacy alerted me to the problem and I took care of it. It's wonderful you have such a supportive family and I am hoping you can get this reimbursed.

[NYgirl]

I wasn't clear at 12 - I was stuck at literally 400 from week 4 to 24.  So although I had a megaload drop by 12 .... it took too long. That is the logic of the 72 weeks.

I contacted Committment - all they wanted was my insurance card number, the exact naem of the med and the doctors name.

Of course I didn't have the insurance card on me so I had to run out to my car - I'll call them back NOW.  I am going to have to go the free route IN THE INTERIM...but I am not going to stop fighting with the insurance.

It might help the next guy that comes down this road.

Lord knows they might not be as stubborn a b*tch as me...so I'll start fighting the fight now ;)

[friole]

I couldn't believe it when I read this post.  I hope Dr. Jacobsen can come thru for you.  It sounds like you are doing everything that you can to get your meds.  I do believe these doctors have more stroke than us but can you call the insurance co and ask for a case manger?  I guess we need to get enerything in writing.  I know what you mean when you said you were almost grateful that it might be the end.  Why does this always happen on Friday?

Here is the Procrit source - Jim is right - start pursuing this right away too.

Neupogen and Procrit sources
Amgen, Inc.
Contact: Amgen Safety Net Programs
Medical Technology Hotlines:
1-800-272-9376 (202-637-6698 in Washington, D.C.)
Drugs Available:

Epogen
Neupogen
Amgen's program consists of a universal patient program and a variable cap program for uninsured patients. Enrollment in the program is based on a patient's insurance and financial status.