Avastin is great but exhausts your piggy bank!

As a former nurse and Women’s Studies Professor, who was diagnosed with IIIC on July 08, I’m interested in gathering information for myself and sharing it with others.

I have tried to follow the protocol for the GOG 218 clinical trial without being in it. Consequently, I had 8 cycles of Carbo and Taxol as well as Avastin. I’ve been taking Avastin since and have been trying to pay for it myself. I did have a small pension (and a husband with a pension) that allowed me to do this. However, as I talk with other women, I hear that they are getting their Avastin paid for by Medicare. But this seems to happen mostly in New York and in California even though Medicare is a national program. That is simply not fair!!!! Most of us can’t change where we live. And most likely nothing will happen to remedy this situation until Ovarian Cancer Survivors do their homework about their states and then start shouting about it. This posted note is my first shout!

Therefore, I’d love to hear about some of your experiences with getting or not getting Avastin off label and either having it paid for by Medicare or trying to do as I’m doing and exhausting your savings or retirement funds. If you are, HOW DID YOU DO IT? Did your Dr. submit documentation? If so, what kind? I’ve always believed that women can accomplish much if they stick together and work for their collective benefit. I have two biological grand daughters and I don’t want them to have either the health problem or the problem of paying for the most promising drug on the market that I’m having. Help me see that that doesn’t happen for my granddaughters and for yours!

By songbird78
Posted April 21, 2009 at 8:02 pm
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Well Im currently in a " blind" Avastin trial , Carbo/Taxol as well, I dont know if Im actually recieving it, but taken into account my symptoms , I do think im recieving it.
Im in NJ , and Im on Medicaid , not Medicare and my doctor simply felt I was an excellent candidate for this
I was a 3B stage canccer, and was in remission 3 years before as recurrance. He was very aggesssive and persistant to get me in, all I did was simply sign the consent forms, it was that easy for me
I can only simply say fight for your needs, like you are doing, and let your voice be heard ,good luck

By Teresalynne
Posted April 22, 2009 at 11:21 pm
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My oncologist had me sign paperws before I started the Avastin and if my insurance will not pay for it, the drug company is suppose to replace the drug to my doctor. I have just started Avastin/Cytoxan (daily pill of cytoxan 50 mg) and the Avastin is every week for 3 weeks and then I skip a week and will have it every other week after that. Check with your doctor or your insurance company and see what they can do. Shout, but do it with a smile...Momma always told me you got more with honey than vingear...I try to remember that, but sometimes when I am "discussing" (will not fight) with the insurance company I have to really talk to myself and remind myself of this saying! haha. You are in my prayers.
Teresa

By acosta1027
Posted April 23, 2009 at 12:01 am
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What are your "signs" that suggest you are getting Avastin? I'm in a blind study with Gemzar/Carboplatin/Avastin and am really hoping I'm getting the Avastin but haven't had the blood pressure increase so I'm thinking maybe I'm getting the placebo.

JoAnne

By lilwitchfromok
Posted April 23, 2009 at 1:32 am
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hey mcelhina, i live in oklahoma with lllc ...my dr had me sign papers for avastin so the insurence company was made to pay for it i am on state funded and medicare because of disability for two years.what state do you live in?..i will start avastin within the next two weeks .had the first round of taxol and carbo then topotecan and now doxil with avastin ,,lets hope it finally works, love jay

By KathleenM
Posted April 23, 2009 at 10:55 pm
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I just had my third Avastin infusion - I live in the state of Washington - and my Doctor said it was just approved for Medicare to pay for it here. He had tried to get me on Avastin for past 2 years through a clinical trial, but I wasn't eligible because I had been on a blind study of Avastin with my first chemo of Taxol and Carbo. I dropped out after three infusions, as it wasn't working for me, but we couldn't find out if I had been given Avastin or a placebo. Therefore, I wasn't eligible to be in another study involving Avastin.

By CATSMEOW
Posted April 24, 2009 at 4:09 am
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Hi, if you cant afford it you can contact the manufacturer and ask for assistance, there web address in www.gene.com or you can go to the chronic disease fund at www.cdfund.org.Hope you get it.Keep Positive

By Jeanne45
Posted April 24, 2009 at 11:57 am
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Regarding insurance paying for Avastin, my suggestion is keep checking with your insurance co. Medicare began paying for Avastin for OVCA patients some time in 2008. I have Blue Shield of CA PPO insurance and my Dr. requested approval for me in Nov 2008 - and it was approved!! An article in the NY Times indicated that many insurance co's are following Medicare on this treatment decision.
Starting in January '09 I have taken 5 rounds of Doxil and Avastin and CA125 has gone from 330 to 30!
Keep trying to get insurance coverage - or make a financial hardship claim with Genentech - this is what my Dr. originally suggested to me. All the best

By DebRhena
Posted April 25, 2009 at 11:15 am
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Well it is back, the nasty disease, I was only in remission for 5 1/2 months...my oncologist states now this indicates that my OVC is platnium resistant. He wants me to begin on Avastin... no other drug with it. My surgical/oncologist isn't in agreement and wants me to go for a second opinion (Duke or MD Anderson). It is so difficult to make a decision when you have conflicting information. My current lesion is 2 x4 cm and I wanted it removed and they say that isn't an option, because the type of tumor indicates that I probably have others that are not appearing YET. Which really SUCKS! I have research Avastin and found one article that stated it would be the drug of choice by 2012 for OVC. Has anyone been on just the Avastin? Does anyone know what the protocol is. I feel sure that we would not have difficulty getting my insurance to pay. Some insurance allow physician to physician discussions which get things approved that wouldn't get approved other wise.... I have been the model patient, no sugar, perhaps 3 classes of wine in 14 months, red meat once a week, chicken once a week, fish and veggies the remainder of time and excersice and it doesn't appear to have helped. I also do mushrooms, ginger, essiac tea, probotics and vitamin C. Any other suggestions out there.

Jeanee45 what was your treatement schedule. What are the side effects with the Avastin besides "high blood pressure". Is this a recurrence treatment for you or primary?

I feel like I'm missing something. I believe that God spoke to me on September 21st and CLEARLY said...YOU ARE HEALED. I believe it, but I sure wish he would step in and do it for me. This disease is so hard on our families. I'm a single Mom with one child and she feels so responsible for me, it breaks my heart! She needs to be enjoying life to the fullest and stop worrying so much. Hope all of you are blessed today and that all of you are a blessing to another.

By MaryW
Posted April 27, 2009 at 12:32 pm
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Nationally, medicare did begin following the compendium that allowed avastin to be covered under medicare for ovarian cancer. I don't know if there are restrictions, however. I think the date was somewhere around Nov 28, 2008. I was able to get avastin under the replacement option through the company for the first two doses (which was before 11/28/08) but since then medicare covers 80%. The 20% I would have to cover is covered by my secondary insurance which I am so grateful to have! It is still quite an expense. If medicare begins to cover it, most other insurances will also, but sometimes they have to be "pushed" to do it. I wish all of you well in your efforts to get it covered. It does seem to be working for me.

By the way, CELEBRATE with me! On 4/20/09 I celebrated my five year anniversary of life with ovca! I have never been in remission with 3C, have gone through many chemos, and have had fairly good quality of life and have felt the best I have ever felt in the last 5 months! YEA!!!
Mary

By mcelhina
Posted April 28, 2009 at 11:56 am
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Mary;

Thank you for your reply. I'm curious to know what state you are in as in some states medicare pays for Avastin and in others it doesn't. That isn't fair because all of our tax dollars go to support medicare.

Also If you have your insurance claim form that was for the Avastin your medicare covered, what JP code was it filed under. I'm trying my best to uncover this change in policy as many of us in various states would like to take Avastin but are told that Avastin isn't covered by Medicare. Thanks so much for sharing and share even more if you feel comfortable doing so. Perhaps together we can give other women hope!

By K-rol
Posted April 28, 2009 at 7:58 pm
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hello
i m french and trial with avastin

i don´t understand i see always
"i pay or my insurance is ok or not"

i m my countrie all medication concerning the cancer is free.
when they proposed my trial they never ask money or something

is it the case in usa???
i affraid !!!

By mcelhina
Posted April 28, 2009 at 11:19 pm
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Good to hear from you. All of us who have ovarian cancer are afraid I imagine because it is such a dreadful disease. But we have to stick together.

In answer to your question, in the US, our health bills and medications for cancer and other conditions are paid for via Medicare if we are over 65 and private insurance if under 65. And all the various plans pay varying amounts. So that is why some of us have Avastin paid for and some of us don't.

I will keep you in my thoughts and prayers as I do all other women throughout the world who have ovarian cancer. Hang in there!

By madcoast
Posted April 30, 2009 at 3:40 pm
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i actually was diagnosed with endometrial carcinosarcoma IIIa after a hysterectomy 3 months...
lymphs, blood and whole body scan was aok.

been taking avastin alone and just completed three treatments and was discussing the 'protocol' with my doc just today. since i am both 'off label' and 'precautionary'

have not experienced increase in blood pressure although i have generally low blood pressure. my 'side effects' have been frequent low grade headaches, muscle soreness and fatigue.

between surgery and start of avastin at 3 week intervals, i did a parasite cleanse, took a fungicide, and then a broad spectrum antibiotic.

i had already had all my amalgams removed and done a heavy metal detox program a few years ago when my adrenals were crashing.

long time healthy eater and moderate exerciser

By tealtalk
Posted April 30, 2009 at 6:39 pm
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I have heard that Medicare doesn't pay for avastin for ovca in all cases. But I feel by now it should be paying no matter where you live in USA... but You just have to navagate through the paper work to get it. Do not take no for an answer !!! I was told I could not get it unless I paid like 25K per treatment. I have had 63 treatments now so I would have paid a fortune. I am glad the Dr who told me that cost was incorrect and that I pursued it father. The next Dr found a way to get it paid for. Never give up !!!

I started avastin alone off label in July 2005 and medicare has covered 80 % and my secondary the rest. I have paid nothing for close to 4 yrs.

Each treatment I have to sign some documents about the drug, however I am told this was for the infusio cost (around 500.00 per treatment) in case medicare did not pick this portion up. And that Genetech who makes Avastin would pick up the cost of the drug should my medicare insurance not pay. This was July 2005. Everything has been covered.

I am just diagnosed as resistant to Avastin and am looking for another targeted drug. (Know of any??)
I hope you are able to get Medicare or any Insurance to pay for Avastin.

By coolmamajan
Posted May 13, 2009 at 10:22 am
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Hi

I've been on Avastin for a year. My doctor's office had a pretty nifty trick.

I had to put down a $4,000 deposit. Then they petitioned my insurance company with the intent of billing and rebilling until insurance finally said "leave us alone already"! This was to buy them time as they submitted me to the drug company. By the time most insurances give a final denial, you've been accepted to the company's program and neither you or your doctor get stuck.

But even though it hadn't been approved for ovarian at the time, my insurance paid! I got my check back immediately.

I got nosebleeds for the first several months and my friend's lips swell (she has colon cancer). It is not a miracle drug as people are being told but it sure helps slow things down.

Welcome to Inspire!

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