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I WON!!!!!!!!!!!!!!!!!!!!!! Update on fight against non-coverage for Actiq

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Chronic Pain
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Posted 6/8/2013 6:55 PM (GMT 0)
So some of you are aware that I was in a battle with my insurance company over coverage of Actiq for non-cancer pain. My first appeal was (of course) denied. I was then told that my second level appeal would involve meeting with some board. Then I was told that it wouldn't and some outside doctor would be doing a review since it was a medical necessity claim. I was a little irked that I wouldn't get to speak with someone directly but at least it was a doctor doing the review. So that gets denied as well. I was legally entitled to read this doc's report. It was clear to me that this doctor didn't even read the documentation I gave him because he listed several pieces of information that he said were missing from the packet (including my initial diagnosis) when it was all there. I e-mailed the appeals coordinator to let her know that I was going to be pursuing the third level (state) appeal. I happened to mention, because I was pissed (can we say that here?) that I didn't feel that the doctor who did the review really reviewed anything.

The next day I get a voicemail from her, and an e-mail. I figured that it was just information on the state appeal...but it wasn't. It was a message that she worked on my behalf (she was awesome throughout the whole process) and got me a phone interview with the Chief Medical Officer and VP of the company. I was amazed because I knew that this was not a normal part of the process. I spoke to the guy earlier in the week and he was completely poker faced about everything. I laid out my case, answered his questions and that was it. He said he would have to think about it, asked if I had any additional documentation (I did), and said he thought he would be making a decision by the end of the week. Today I got the letter: they reversed the earlier decision. The letter said that the doctor was very moved by the case I presented. I am so, so excited! The last two months have been absolute hell. My doctor first tried morphine and then dilauded, neither helped much and both made me really, really sick. I am so, so happy!!!!!
Posted 6/8/2013 7:06 PM (GMT 0)
Congragtulations!!! So happy for you. The squeaky wheel got the oil in the end.

Real moral of the story: You have to be your own best advocate, and you were.

david
Posted 6/8/2013 7:06 PM (GMT 0)
Congrats !! And am so proud of you for following thru with this.
Posted 6/8/2013 9:15 PM (GMT 0)
Very proud of you! How encouraging to hear that your percervence paid off. Congratulations!
Posted 6/8/2013 9:46 PM (GMT 0)
Congrats!!
Posted 6/8/2013 10:56 PM (GMT 0)
Congratulations I'm so happy for you.

hugs
Loretta
Posted 6/9/2013 12:10 AM (GMT 0)
Every once in awhile our hope is restored when a CPer wins a round! !

Thanks to your determination this will help others as well as yourself. They may be more lenient for those who come after you.

Take a bow for a job well done.
Posted 6/9/2013 1:23 AM (GMT 0)
Thanks for all of the encouragement when I was fighting and in sharing in my joy in victory. When I started this process I said to my husband that I was going to pursue this as far as possible even if I found another drug that worked for me. The distinction between cancer pain and non-cancer pain is just silly and an outdated concept. I know that when dealing with cancer, especially terminal, the fear of addiction is removed...who cares if someone with 6 months to live gets hooked? But we are all living proof that narcotic pain meds can be used safely and responsibly.

Here is the thing that angers me most: I found a summary of FDA studies where the FDA comes right out and says that Actiq and Fentora are absolutely effective for treating non-cancer pain. THE REASON THEY WON'T CHANGE THE LABEL IS BECAUSE AS MORE PEOPLE ARE PRESCRIBED THE DRUGS, THE NUMBER OF ADVERSE INCIDENTS INCREASES. Well duh. This is true for every single narcotic on the planet. Those serious adverse incidents and deaths were almost exclusively caused by doctors not knowing how to prescribe the medication correctly (giving it to people not on round the clock opiates and who aren't opiate tolerant), irresponsible patients not following dosage guidelines or not securing their meds and they get stolen/found/sold to people who shouldn't be taking them. This is an outrage...we are being denied access to a medication that the FDA knows is effective because idiot doctors and irresponsible patient's cannot read the most basic of instructions and prescribing information. Insane.

Anyone out there fighting their insurance company: do not leave it to your doctor unless your doctor is as outraged and motivated as you. My doctor's medical necessity letter was four or five sentences long. I went out and did the research. The internet is a wonderful thing. If you can't find the full text of an article online (without paying for use) check with your library and see if they can help you. Your medical record is not enough...include journal articles, a detailed history of your medical conditions including the repercussions you have suffered, or will, without the medication. Address the specific reason for the denial as best you can. Throw the proverbial kitchen sink at them.
Posted 6/9/2013 3:45 AM (GMT 0)
Congrats! I am glad you won your case! I am in a similiar situation as you, but have not gone to the lengths you have gone. I am currently on the fentanyl patches and percocet for BT pain. However, I would rather not be on the percocet if possible and my doctor has told me about Actiq before as an alternative for BT pain, but I cannot get my CICP to cover it since there are no generic versions for it (as far as I can tell). I know one person that I used to work with who uses them for BT pain and he has non-cancer related chronic pain, so I know it is possible.

You have given me a small glimmer of hope for the future. Again congrats!
Posted 6/10/2013 6:16 PM (GMT 0)
Lost,

I'm a bit behind on posts.... but congrats. Good job at pushing through to get the med that helps you best!

--Tina
Posted 6/10/2013 6:16 PM (GMT 0)
Lost,

I'm a bit behind on posts.... but congrats. Good job at pushing through to get the med that helps you best!

--Tina
Posted 6/10/2013 6:17 PM (GMT 0)
Brett,

Generic oral fentanyl is available, just FYI :)

--Tina
Posted 2/17/2014 8:39 AM (GMT 0)
lost_grrl...I know this is an older thread but if you get this message will you please contact me...I am in a battle with insurance and just had a few questions for you! Thank you for your help!
Posted 2/17/2014 9:03 AM (GMT 0)
This thread has been brought back up several times and this poster never returned so I'm locking in the hopes that everyone will start a new post and get answers since very few respond to old posts.
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