Insurance company wont pay for chemo.....this is BS!

SarahD
SarahD Member Posts: 139
edited March 2014 in Colorectal Cancer #1
Short history My dad was diagnosed with primary liver cancer in march 2010. Never been sick only 54 years old.
Treatment options have been running out and we were going to try using chemo that is used for colorectal cancer gemzar, avastin, and oxilaptin (forgive the spelling). Long story short we were on our way to boston to get the portacath placed and they told us last minute that because this chemo has not been proven by the fda or clinical trial to be beneficial for his type of cancer his insurance will not pay for it and we have topay out of pocket about 30,000 a month!! How can this be how can there be a price on life we are so devastated this is just insult to injury! these drug companies have trillions of dollars why cant they help somone in need! Fy father has worked everyday in his life and has never needed to use insurance for anything this big and when he finally does they say no!
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Comments

  • Lori-S
    Lori-S Member Posts: 1,277 Member
    Hang on
    Take a deep breath. This happens all the time. Sometimes all you have to do is speak to the right person and sometimes you have to jump through some hoops first. Let me dig up some information for you that will help.
  • Lori-S
    Lori-S Member Posts: 1,277 Member
    Lori-S said:

    Hang on
    Take a deep breath. This happens all the time. Sometimes all you have to do is speak to the right person and sometimes you have to jump through some hoops first. Let me dig up some information for you that will help.

    Here you go
    Follow this thread. http://csn.cancer.org/node/202707

    Mukamom was able to get the treatment that was first denied so you might also want to PM her or Jennie (Idlehunters) as they have both dealt with insurance company denials. I spent a lot of years going through the same process with a different illnes situation. I know it can be frustrating and scary but, just push forward and know that if you have to jump through the hoops it is for a good cause.
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    Lori-S said:

    Here you go
    Follow this thread. http://csn.cancer.org/node/202707

    Mukamom was able to get the treatment that was first denied so you might also want to PM her or Jennie (Idlehunters) as they have both dealt with insurance company denials. I spent a lot of years going through the same process with a different illnes situation. I know it can be frustrating and scary but, just push forward and know that if you have to jump through the hoops it is for a good cause.

    Here's Another One...
    And Lisa42 as well - she battled to have the Gemzar given to her and went round and round with the insurance and had her oncs writing her letters and she was writing her and attaching theirs etc.etc.

    Thx Lori!

    -Craig
  • Kenny H.
    Kenny H. Member Posts: 502 Member
    Sundanceh said:

    Here's Another One...
    And Lisa42 as well - she battled to have the Gemzar given to her and went round and round with the insurance and had her oncs writing her letters and she was writing her and attaching theirs etc.etc.

    Thx Lori!

    -Craig

    Ya these insurance companys
    Ya these insurance companys can really piss you off. You pay them loyally your premiums all these yrs and finally when you need help they back out.
    Was like pulling teeth to finally get my disability approved thru met-life. Have to threaten with lawsuit to get anything going!
  • lisa42
    lisa42 Member Posts: 3,625 Member
    ugh!
    Hi,

    I hear ya- been there, done that! I just finished writing a lengthy reply telling you all about how I was denied getting Gemzar covered twice by my insurance (Health Net) & ended up getting them to cover it after all, including $4700 I had paid out of pocket for my first couple of treatments... then I clicked "post comment" and the whole thing disappeared. Frustrating! I have to leave for an appt soon and don't have time to type it all over again, but if you send me a PM, I'd be more than happy to share what I did and how I got them to cover it for me. Insurance companies are hoping that you will be discouraged after their denial and that you'll just give up and go away. They didn't know who they were dealing with- I was not about to give up!
    Anyhow, this fires me up again & I think I can help you out by sharing my experience and what I did.
    Hopefully we'll talk soon...

    Lisa
  • Lori-S
    Lori-S Member Posts: 1,277 Member
    lisa42 said:

    ugh!
    Hi,

    I hear ya- been there, done that! I just finished writing a lengthy reply telling you all about how I was denied getting Gemzar covered twice by my insurance (Health Net) & ended up getting them to cover it after all, including $4700 I had paid out of pocket for my first couple of treatments... then I clicked "post comment" and the whole thing disappeared. Frustrating! I have to leave for an appt soon and don't have time to type it all over again, but if you send me a PM, I'd be more than happy to share what I did and how I got them to cover it for me. Insurance companies are hoping that you will be discouraged after their denial and that you'll just give up and go away. They didn't know who they were dealing with- I was not about to give up!
    Anyhow, this fires me up again & I think I can help you out by sharing my experience and what I did.
    Hopefully we'll talk soon...

    Lisa

    Thanks Lisa
    for offering to help with this. I know first hand how frustrating it can be. I luckily haven't had to do this in a couple of years so I might be rusty and having someone like you here with first hand, recent experience is such a blessing.
  • geotina
    geotina Member Posts: 2,111 Member
    Oh No:
    Send a PM to Lisa42, she know the appeal process to get approval for drugs.

    Additionally, personally, I would hire an attorney to notify the insurance company that they have been hired by you to protect your rights, interest in this denial. If it is a competent attorney, they will throw in some few choice words regarding "life in jeopardy". Coming from a legal background I can attest to the fact that once a company knows an attorney is in the mix, they back down on their decisions.

    Secondly, can you contact the local TV station that your father is being denied chemotherapy that could save his life. They love these types of human interest stories. Type a letter tonight and e-mail and send it out to all stations in your area. Insurance companies hate to be on the news.

    There might be a division of your state government also that may be of assistance. Buzz around the state internet site and send your letter to anyone and everyone that might be of assistance.

    Copy these letters to your insurance company. Look up the name of the guy at the top and send them to him. Also, contact your senator, congressman, anybody and send them an e-mail also that your dad is being denied potential life saving chemotherapy.

    Now go get to work - Take care - Tina
  • lisa42
    lisa42 Member Posts: 3,625 Member
    I'm back
    Ok, now I'm back from the appt and will share a bit more info...
    The place to contact is the Department of Managed Care for your state.
    I was required to "be denied" twice by my insurance company before I could appeal to them (in Calif, but I believe every state has this dept). Frustrating, but since is this is what I was told, I had my onc put in to insurance once again, along with some additional information. Hoping I wouldn't get denied again, but assuming I probably would, I had already downloaded and started filling out the paperwork to send to the DMC (Dept of Managed Care). Sure enough, the second denial came pretty quickly- I really think they did not read or consider any of the letters or information submitted by my doctors, and that it was just a routine denial and they hoped I'd give up and go away. Not this girl! Anyhow, after I had paid for my first few treatments by credit card, I submitted all my records, letter from my oncologist, supporting info from Dr. Lenz at USC/Norris Cancer Center in L.A. (whom I had consulted with and he was the one who advised my regular onc that this is what I should take). I then went over all the info and highlighted the most important parts for them to read, and then I wrote my own letter. I basically summarized my situation and reasons for needing this drug. I also pointed out that if they did not approve the Gemzar for me, that my doctor (although it would not be as effective for me) would put me back on some of the other drugs that they had already approved at other times & those drugs would even be more expensive! This may not apply in your dad's sitation, though. I summed up how although I had recently shown disease advancement on the FDA approved drugs, I was pretty healthy overall (other than the cancer). I was still functioning and functioning pretty well. I put it to them... did they want to be responsible for my death by denying me the drugs that I need to go on living? I also put it to them... if it were their husband, wife, grandpartent, child, etc., wouldn't they want to do everything possible to prolong their life and fight the cancer? Even if it only ultimately prolonged life for a little while, how could they put a price on my life- would they like to tell my husband that my life "isn't worth it financially to them" to give me the drugs I need?!
    I also said in my letter that I'd rather not have to, but I was fully prepared to contact my local newspaper and news station to give them a human interest story about my insurance denial. As someone else already pointed out, insurance companies do not like bad press.
    If you happen to have Health net, which is what I have, that would even be better because my fighting them and winning may help pave the way for you a bit. If not, it might still be worth mentioning.
    Anyhow, they're wanting you to give up- so don't! Also- Google "the insurance warrior". It is a lady who had her own battle against the insurance companies to get coverage for what she needed & she now helps others by telling them how to go about it.

    My husband is a lawyer and he was ready to have another one of the lawyers in his firm type up a letter on their letterhead, but I actually typed my letter and was successful without his help & he was very proud of me!

    If you'd like any more thoughts or tips on how to approach all this, definitely send me a PM. I will be checking for it, in case you do send it. This is all too stressful just by itself without having to deal with insurance denials!

    Hugs to you and I look forward to possibly talking with you soon-
    Lisa
  • SarahD
    SarahD Member Posts: 139
    lisa42 said:

    I'm back
    Ok, now I'm back from the appt and will share a bit more info...
    The place to contact is the Department of Managed Care for your state.
    I was required to "be denied" twice by my insurance company before I could appeal to them (in Calif, but I believe every state has this dept). Frustrating, but since is this is what I was told, I had my onc put in to insurance once again, along with some additional information. Hoping I wouldn't get denied again, but assuming I probably would, I had already downloaded and started filling out the paperwork to send to the DMC (Dept of Managed Care). Sure enough, the second denial came pretty quickly- I really think they did not read or consider any of the letters or information submitted by my doctors, and that it was just a routine denial and they hoped I'd give up and go away. Not this girl! Anyhow, after I had paid for my first few treatments by credit card, I submitted all my records, letter from my oncologist, supporting info from Dr. Lenz at USC/Norris Cancer Center in L.A. (whom I had consulted with and he was the one who advised my regular onc that this is what I should take). I then went over all the info and highlighted the most important parts for them to read, and then I wrote my own letter. I basically summarized my situation and reasons for needing this drug. I also pointed out that if they did not approve the Gemzar for me, that my doctor (although it would not be as effective for me) would put me back on some of the other drugs that they had already approved at other times & those drugs would even be more expensive! This may not apply in your dad's sitation, though. I summed up how although I had recently shown disease advancement on the FDA approved drugs, I was pretty healthy overall (other than the cancer). I was still functioning and functioning pretty well. I put it to them... did they want to be responsible for my death by denying me the drugs that I need to go on living? I also put it to them... if it were their husband, wife, grandpartent, child, etc., wouldn't they want to do everything possible to prolong their life and fight the cancer? Even if it only ultimately prolonged life for a little while, how could they put a price on my life- would they like to tell my husband that my life "isn't worth it financially to them" to give me the drugs I need?!
    I also said in my letter that I'd rather not have to, but I was fully prepared to contact my local newspaper and news station to give them a human interest story about my insurance denial. As someone else already pointed out, insurance companies do not like bad press.
    If you happen to have Health net, which is what I have, that would even be better because my fighting them and winning may help pave the way for you a bit. If not, it might still be worth mentioning.
    Anyhow, they're wanting you to give up- so don't! Also- Google "the insurance warrior". It is a lady who had her own battle against the insurance companies to get coverage for what she needed & she now helps others by telling them how to go about it.

    My husband is a lawyer and he was ready to have another one of the lawyers in his firm type up a letter on their letterhead, but I actually typed my letter and was successful without his help & he was very proud of me!

    If you'd like any more thoughts or tips on how to approach all this, definitely send me a PM. I will be checking for it, in case you do send it. This is all too stressful just by itself without having to deal with insurance denials!

    Hugs to you and I look forward to possibly talking with you soon-
    Lisa

    LISA
    This forum is amazing, the support is unbelievable. What is a PM? Much of what you said is exactly what my fathers oncologist told us today. He said that because the treatment isnt proven by the FDA as a treatment for liver cancer and the chances of it helping him are only 1 in 5 insurance is refusng to pay for it. But as my oncologist said to us last week while discussing treatment options "If you are the 1 in 5 that it helps then it is worth it" The FDA drug for liver cancer, sorafenib did not work for him as he had disease progression in his liver. This is serious and time is precious. The oncologist told us today that this will not cure him and only buy him months, it ws so hard to hear. He is still functioning and leading a normal life but if the liver starts to fail we are in deep s***. They told us the treatment will be around 30,000 a month! I feel the same way, how can anyone put a price on life! I guess my father is not a good investment to them but he is to me, my brother, and sister and his granddaughter and new grand-baby -to-be! Pharmaceutical companies have billions of dollars! Why cant they make it easy for someone to get treatment! My father has done everything right, always payed his taxes, never had a speeding ticket, worked hard everyday of his life for his family! Now its his time to wind down and enjoy life and he is fighting for it. THen on the other hand you have people who come here and never work a day in their life and get everything for free. Its so angering to me! I have already contacted the congressman, we were given a number of a woman who deals with insurance companies in our area. Not sure if it will work. Im tempted to contact the newspaper and the local tv station just to put them to shame!
  • Lori-S
    Lori-S Member Posts: 1,277 Member
    SarahD said:

    LISA
    This forum is amazing, the support is unbelievable. What is a PM? Much of what you said is exactly what my fathers oncologist told us today. He said that because the treatment isnt proven by the FDA as a treatment for liver cancer and the chances of it helping him are only 1 in 5 insurance is refusng to pay for it. But as my oncologist said to us last week while discussing treatment options "If you are the 1 in 5 that it helps then it is worth it" The FDA drug for liver cancer, sorafenib did not work for him as he had disease progression in his liver. This is serious and time is precious. The oncologist told us today that this will not cure him and only buy him months, it ws so hard to hear. He is still functioning and leading a normal life but if the liver starts to fail we are in deep s***. They told us the treatment will be around 30,000 a month! I feel the same way, how can anyone put a price on life! I guess my father is not a good investment to them but he is to me, my brother, and sister and his granddaughter and new grand-baby -to-be! Pharmaceutical companies have billions of dollars! Why cant they make it easy for someone to get treatment! My father has done everything right, always payed his taxes, never had a speeding ticket, worked hard everyday of his life for his family! Now its his time to wind down and enjoy life and he is fighting for it. THen on the other hand you have people who come here and never work a day in their life and get everything for free. Its so angering to me! I have already contacted the congressman, we were given a number of a woman who deals with insurance companies in our area. Not sure if it will work. Im tempted to contact the newspaper and the local tv station just to put them to shame!

    Sarah
    I just want to throw something out there. Since time is of the essence. why not contact the drug companies that manufacture the drugs that the onc wants sto use? Ask them if they are willing to donate the drugs while you appeal the denial from the insurance company? I know that a lot of the drug companies have programs that give discounted or even free chemo drugs depending on income level. Perhaps they might be willing to go the extra step to help you out in the instance. Maybe have the doctor also write up a letter explaining how important these drugs are for your father. Maybe at least that way you can get him started? Just a thought. Also, remember that some of the drugs might be manufactured by multiple companies so you might have more than one shot at getting some help with it.

    Here is a site that lists the manufacturers and the drugs and helps with assistance:

    http://www.pparx.org/
  • SarahD
    SarahD Member Posts: 139
    Lori-S said:

    Sarah
    I just want to throw something out there. Since time is of the essence. why not contact the drug companies that manufacture the drugs that the onc wants sto use? Ask them if they are willing to donate the drugs while you appeal the denial from the insurance company? I know that a lot of the drug companies have programs that give discounted or even free chemo drugs depending on income level. Perhaps they might be willing to go the extra step to help you out in the instance. Maybe have the doctor also write up a letter explaining how important these drugs are for your father. Maybe at least that way you can get him started? Just a thought. Also, remember that some of the drugs might be manufactured by multiple companies so you might have more than one shot at getting some help with it.

    Here is a site that lists the manufacturers and the drugs and helps with assistance:

    http://www.pparx.org/

    Thank you so much! We just
    Thank you so much! We just felt so defeated when we were driving home from boston denied! IM will do everything i can! I was just married in october and sooo thankful to have him walk me down the isle now I have a baby due in May and I want him to be here so bad!
  • mukamom
    mukamom Member Posts: 402
    SarahD said:

    Thank you so much! We just
    Thank you so much! We just felt so defeated when we were driving home from boston denied! IM will do everything i can! I was just married in october and sooo thankful to have him walk me down the isle now I have a baby due in May and I want him to be here so bad!

    I know how
    your feel...we felt just the same as you when BCBS denied stereotatic (cyberknife) radiation for Robert's tumor on his liver..there weren't any other viable options due to the location and it was still growing even on chemo. Our surgeon wrote a very detailed letter explaining why this was the only treatment and thats what all it took. I was in contact with a patient advocate for Accuray(the co. that holds the trademark) and she suggested everything that lisa42 stated. Thank goodness the letter was all it took, I was very afraid this was going to drag on for months, all the while nothing was getting done to kill this.

    Am hoping and praying that you get a fast resolution to this. It's hard enough dealing with our loved one's cancer without having to fight another beast.

    Wishing you strength and ((hugs))

    Angela
  • lisa42
    lisa42 Member Posts: 3,625 Member
    Sarah- how to send a PM
    Hi again Sarah,

    A PM is a private message (basically an email through this CSN board). To send someone a private message, click "CSN Home" at the top left of the screen. Next, go to the center and click on "#New message" (or maybe it says "#New Mail"- one of the two). Under it are choices of Inbox, Sent mail, and add contacts. Scroll down to the bottom of the page then and click on "send new message". You'll need to enter the person's screen name in the "to" section of the message. If someone sends you a PM, you would get it by clicking on CSN Home and then Inbox.
    I will send you a PM right now with my home email address, as that may be easier if you should wish to discuss this anymore. I'm off to go make some dinner, but will check again later tonight and tomorrow.

    Hugs,
    Lisa
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    praying
    I don't have more info for you, just want to say that I'm sorry about your dad, and I really pray this gets straightened out immediately, so he can get treatment.

    *hugs*
    Gail
  • bruins1971
    bruins1971 Member Posts: 227
    Like Lisa said take a step
    Like Lisa said take a step back and breath as this is the way insurance companies work. I really think the CEO is the devil himself, LOL.... I was denied my first petscan but the doctor sent in a letter and they cleared it within 3 days. After that they have not questioned anything I have done and Lord knows I have been billing the heck out of them. My colon surgery, liver surgery and chemo has cost United Healthcare over $480,000 since March of this year. Never give up and never stop to ask God for his help. I only say this for I see in other post you mention God. With God all things are possible even when it seems like the insurance company is gonna turn you down. Keep calling and eventually you will talk to the right person and he will be approved.

    Praying for you
    Bobby
  • SarahD
    SarahD Member Posts: 139

    Like Lisa said take a step
    Like Lisa said take a step back and breath as this is the way insurance companies work. I really think the CEO is the devil himself, LOL.... I was denied my first petscan but the doctor sent in a letter and they cleared it within 3 days. After that they have not questioned anything I have done and Lord knows I have been billing the heck out of them. My colon surgery, liver surgery and chemo has cost United Healthcare over $480,000 since March of this year. Never give up and never stop to ask God for his help. I only say this for I see in other post you mention God. With God all things are possible even when it seems like the insurance company is gonna turn you down. Keep calling and eventually you will talk to the right person and he will be approved.

    Praying for you
    Bobby

    Thanks Brry its just a crapy
    Thanks Brry its just a crapy thing on top of dealing with an Illness. I just dont undestand life anymore
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    A little miracle don't let the bastards off the hook
    Its crazy we have the similar issues all around our world.
    My ONC begged the drug company here for OXALI on compassionate grounds as we are almost broke and I am a father with two kids with a late stage T4 cancer.
    In USD it would cost $26000 for drug alone here. All I have to pay is $5000 for dispencing fees from the phamacy. I am very grateful to the drug company and my ONC.

    I have rectal cancer and OXALI and 5FU are the international best practice.
    All thats approved here is 5fu.

    If I had a higher up colon cancer its covered under our PBS by our government scheme.

    Apparently another trial is required for rectal cancer patients here to access to OXALI

    I am writing the letter now to my health insurance to see if they will pickup the phamacy charges. I found the financial dramas as challenging as the medical ones.

    Anyway good luck and don't let the bastards off the hook and keep hoping and trying.
    The info on this board is amazing. we are so lucky to have it.