$2100???

[Joy]

Oh my goodness. Ijust found out that my insurance requires that I pay 60% of the cost of Tykerb which equals $2100/month. Tykerb Cares only referred me to the Patient Access Network and Healthwell. I got in touch with the PAN and they will begin a process, but I won't even know if I'm approved for another 2ish weeks. they will reimburse retroactively up to 90 days prior to approval, but if I'm not approved then what?

So, I'm now in the OTHER club of Tykerb frustration. Meanwhile it has been 2 weeks without any treatment and I really don't want to go too much longer.

I know who should work for Tykerb Cares-US! WE would get the job done wouldn't we ladies?

[SoCalGal]

Did you have to pay the same percentage for your other chemo? Why just this one?

[Lolly]

Joy, I ran into the same problem with my insurance which is a Medicare based plan. They view Tykerb as a "Specialty Drug" and it's at the highest copay. I was told I could apply for an "Exception" for Tykerb, the paperwork would take a couple of weeks, but no guarantee it would be approved.

The crime here, IMHO, is that insurance companies are allowed to classify oral chemotherapies as prescription meds and can therefore charge a higher copay, whereas infused chemo's are normally covered at 100% or close to it depending on the plan.

Seriously, there oughta-be-a-law!!! Maybe we're the ones who will have to advocate for a change!

Joy, I am shocked and dismayed for your sake. Ask about an appeal of the coverage offered, see if they can offer an exception.

And please don't give up hope.

<3 Lolly

[Mary Jo]

Oh my gosh.......on top of all the other worries one should NOT have to worry about those insurance companies and all the games they play. That is almost more frustrating than the cancer, ya know?

I'm sorry for those who have that trouble on top of the other troubles.

Hugs,

Mary Jo

[Jean]

One would think that since Tykerb is oral it would also cost less
to administer verses the other chemo's which require infusions, staff and
nurseing attendance..hospital or cancer center operation costs...how
does the insurance carriers get away this and justify this rational?
No one in our country should have to be charged that sum of money monthly
to have their meds....we spend billions out of the states...Charity begins
at home..here in the good USA....I can't understand why the rich and famous
are not aware that many people right here need help!

Jean

[Joy]

I love you guys. I do think, as Lolly said, that we may need to be the ones who advocate for change. As one of my best friends said, "You know, a lot of money, time and hard work goes into developing these drugs to help people with these diseases and yet no one can afford to buy them."

I am going to write a letter to the insurance company mentioning the fact that they seemed willing to cover herceptin weekly (not cheap) at 100%. So "WHAT UP?" with Tykerb. I'm also going to take them up on their offer of a nurse case manager, which I don't really need, but now maybe I'll have one central person.

And, of course, my AMAZING family is willing to help get me on this drug. Even my ex-husband said that he'd charge it to at least get started and hopefully the Patient Access Network Foundation will approve me and can help with most of this. Which all seems dumb because I do have insurance and I'm not wanting to take advantage of other programs that other people probably need more than me. But as I have felt like a loser all day that I can't buy my own meds, my friends and family have reminded me that virtually no one can pay $2100/month for meds.

Meanwhile the little cancer cells just go unchecked. And I'm frustrated and yet I know that people all over have much harder circumstances, much less help or even love and that really makes me sad. I'm one of the lucky ones. 'specially 'cause I have you guys.

[hutchibk]

You are in the hell that I was in last week. This week has been a new kind of hell. Anyway, back to what I learned in last week's hell. Because Tykerb (and in my case Xeloda) are oral, they do not get charged to your insurance under the medical portion of the plan like infused chemo. The are considered prescription and charged to your prescription benefit. My script benefit is $1500 for the whole year! LOL. I was also mortified to learn that I would owe upwards of $2200 for each, Ty and Xel, each month! I promptly called my oncologist's nurse, who promptly put me in touch with the patient assistance and advocacy nurse at my cancer clinic who did the homework, made the calls, and found out how to apply me for the GSK and Roche assistance programs. Were it not for her, I would not have known what to do. Call your onc's office, tell them what you have learned about your co-pay, and ask if they have a patient advocate assistant who knows the ropes and can help you out. At my clinic, this is her specific job, and she is awesome. In lieu of her, I would have gone straight to the clinic social worker.

[Jeanette]

Shiela, my prayers go out to you and your friend. I have a friend that I have had for over 40 years and guess what ,we were diagonosed with cancer the same day.Hers is in the colon and mine was breast . We raised our kids together and have went thur hell together. With all the radation she has had she is now in a wheelchair. We hold onto each other dearly and have talked about what could happen' All we both ask if and when the time comes is to go in peace with our families with us. I certainly hope your friend is at peace with herself. My prayers go out to you both, Jeanette

[Joy]

I know I'll be working with the oncs office today. I appreciate your newly acquired savvy. I wish it was easier for you. I'm lucky that I don't have a maximum drug benefit allottment. But, I knew these drugs because they are oral don't work the same as infusion drugs within the insurance biz. I'm still going to point out to the insurance company how dopey they are...'cause I want to.

I thought the GSK program was for those without insurance? But if they can help with this ridiculousness, that would be great.

[hutchibk]

I believe that GSK and Roche know that the co-pays and insurance processes for this new protocol are a nightmare. I could be wrong, but I think they have assistance programs that are geared to try and help with these issues and not just for uninsured folks.

[Odette]

Joy, Lolly Brenda,

I know how frustrating this is.
Since 4/13 when I was prescribed the X/T I was told by my Insurance that Xeloda is covered (once), Xeloda is not covered (twice), Tykerb is not covered (twice), Tykerb covered (twice).
I spent two hours with my social worker/patient advocate today when they finally decided that they will pay for Tykerb, but even after 55 minutes on the phone we could not find out at what co-pay level will they cover it.
(The mean time Commitment has approved me for 1 month). The pharmacy is supposed to send it on Monday.
Hopefully a whole month after I had it prescribed I can finally start.
I'll just pay for my Xeloda (get only a week's supply at a time) for now and see if I can get some help. Just do not want to wait any longer.

I tried to write up the whole going back and forth, for the record. It is pretty long and I'm still working on it I'll send a version of it to my Insurance Co also maybe I can find a journalist who would use it in an article. OR we could fit it into the Tykerb Tygers Diarrhea Divas opera...

Keep in touch,
Odette

[Andi]

Joy - I am so sorry to hear about your copay dilema. It stinks that on the one hand we have these new promising drugs and then we get caught up in he system trying to access them. I think Brenda is on the right track, let's hope you can find a case worker that will really do you some good. You are in my prayers, girl, hang in there- you will find a way to make this work.

[cvbul]

Expensive really. http://www.chemotherapy.nl/pixel_blue.bmp (http://www.phyto-therapy.nl/)http://www.chemotherapy.nl/pixel_blue.bmp (http://www.treat-cancer.nl/)http://www.chemotherapy.nl/pixel_blue.bmp (http://www.chemotherapy.nl/)http://www.chemotherapy.nl/pixel_blue.bmp (http://www.lung-cancer.nl/)

[Sandy H]

Jean is so right, charity starts at home. Lets take care of our own and than what is left over help the others! These drugs cost so much because its the advertising that goes along with them!!!!! Lots of the money given for research goes for advertising these drugs. Its all a business where money does the talking. Sorry, don't want to sound negative but as I say if the truth hurts-too bad. That's my two cents worth for today. Wishing you all a very Happy Mother's Day. Sandy

[Brenda_D]

I ran into something similar with Herceptin, and if it weren't for my Onc deciding to give me a "personal credit" on what I'd owe him out of pocket for each treatment, I wouldn't be able to get it.

I ran across something in an AARP journal about "biologics" and emailed my state representatives (Durbin and Obama) about the problem.
A little about it here. (http://www.aarp.org/research/press-center/presscurrentnews/generic_biologics_oversight_hearing.html)

[ElaineM]

Hi,
Does anyone know if any of the Medicare part D plans pay for Tykerb or if any of the drug companies financial aid programs do?
ElaineM

[Lolly]

Elaine, I have Medicare and my prescription plan considers it a Tier 4 prescription so it's at the highest co-pay, 25% for me (total monthly cost of Tykerb is around $3,000). On top of that, even with my plan paying 75% I was thrown into the Coverage Gap, aka The Donut Hole, and my total out-of-pocket for this first month was almost $1,500. Next month I will have to pay $700-$800 before I reach the maximum out-of-pocket of $3,800 and then after that the plan will pay 95% so my share will be $170-$180.

It's a shame the government is allowed to dump the cost of chemo drugs on those least able to afford them, just because they're oral not IV!

Sorry to be the bearer of bad tidings, but TykerbCares does have a Patient Assistance program to help bear the cost.

<3 Lolly

[Sheila]

What a difference we all have in out insurances. Although I haven't taken the Tykerb yet, I do know that my husbands BCBS of IL pays for my Xeloda through Caremark. I get 280 tablets (500mg) sent via the mail through their Onc. Med Dept, via FEDX, and my cost is $5.00....I would think Tykerb would be the same....although the hospital way overcharges for my Herceptin every 3 weeks (10,000), I don't pay a dime. I just got a new shipment of Xeloda. If she takes me off it next week when I go to see the onc., and says I am not going back on it, I will be glad to send it to someone, its never been opened. I will see what she says...I guess i am lucky to have my husbands insurance.

[Odette]

Sheila,

unless sy else needs it more I'd love to have it, right now I'm taking a week's supply of a friend's who is off of it but after this is out I'll have to pay for it - I think it is about $ 900 (+) for a month's supply.

Eventually I hope to be on assistance/fight it out with insurance but that might take a while.

Thank you so much for the offer!

Odette

[Odette]

Sheila,

I'm just reading your signature and your progression sounds a lot like mine. Have you discussed radiation of the nodes with your oncologist?

I had that done it was terribly painful but effective for me. How about adding Tykerb to the Xeloda?

Second opinion?

Hugs and prayers,

Odette

[Shell]

Joy-

Brenda's advice sounded right on, and I hope you get the answers and reduced costs as a result. I am like Sheila, in that I'm very grateful my husband's insurance - it covers all but my co-pay of $19/month for tykerb.

Stay postive and focused, and I'm sure things will work out for you.

Kind regards,

[Sheila]

Odette

I won't know if the onc. will keep me on the Xeloda yet, I will find out next Monday when I go for my Herceptin...this is my week off and my feet are really hurting. I don't seem to be havig a good response to the Xeloda this time, but I haven't taken 6 cycles yet...if she changes me, I will send you my "stash."w

[Odette]

Yesterday my nurse calls: my oncologist got a fax that Anthem is going to cover my Xeloda. Yess, it is in writing now.

This morning at CVS to fill my prescription, I inquire what is my copay?
So the lovely pharmacist calls the special line reserved for pharmacies, they put her on hold, then hang up on her then the answer comes: my copay is 100% = $1250 for two weeks of Xeloda.

The reason they gave her is that it is a brand name; my coverage is good only for generic.

Crazy, I was so upset I forgot to get the other things I wanted at CVS, then went to the grocery store then drove home w/o my groceries.

I guess I should not take it personally. I think I'll drive to Canada over the weekend and get it there; it is only about $ 900 according to my research.

My only consolation is all of you gals, following and sympathizing and the letter that I'll write to the insurance company.

Love and hugs,

Odette

[Odette]

Oh Sheila,

I'm so sorry to hear that your feet are hurting so much, you would probably like to be off the X.
This insurance business makes me feel like I stepped into Franz Kafka's novel The Trial. I hope things work out well for you either with or without the Xeloda.

Please just e-mail me if you really do not need the rest of your X pills.

My prayers and good wishes are going your way,

Odette

[vickie h]

Joy, I called Tykerb Cares when My insurance refused to get me to a specialty pharmacy and pay for the Tykerb. I called 866-489-5372 and they were absolutely wonderful. They worked everyday for 2 weeks to get me the medication and my co pay ended up at 20 dollars a month, this was after my insurance refused to pay for it! Keep calling your insurance, but I would trust that the Tykerb Cares program will do most of the work for you. They were relentless in getting me mine. Much love and luck to you, Vickie