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posted
I have a dilema that I am wondering if anyone else is sharing. I think this may be a result of the FDAs new REMS. I have suffered from chronic pain near on eleven years from a surgery gone wrong. After numerous doctors and medications, I found the one drug that works for me. Fentanyl. I have been on the generic and brand name oral transmucosal fentanyl citrate suckers for 8 of those years. They are the one thing that allows me a semblance of a life. I am also on the duragesic patches. Recently my insurance company refused to pay for my actiq because I do not have cancer. I cannot afford the $20 dollars a sucker as I recieve 150 a month. I was hoping for some help, advice? is anyone else dealing with this? Is anyone on an insurance company that still covers actiq for chronic pain, not cancer? Is there a legal process? I'm scared of having the one thing that allows me out of the house taken away, and of course the withdrawal. HELP please!

This message has been edited. Last edited by: KT,
 
Posts: 22 | Registered: 01-11-2010Reply With QuoteReport This Post
Picture of Karen Lee Richards
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Actiq is one of three drugs that the FDA has applied new and unique REMS to. I fear this may be a sneak preview of what lies ahead for all opioids. However, I'm not sure your insurance company's denial necessarily has anything to do with that. More and more insurance companies are refusing to pay for off-label uses of medications, particularly when the medications are expensive. It's simply a way to save money.

First, the best thing you can do is appeal the insurance company's decision and ask your doctor to intervene and tell them the Actiq (or its generic) is medically necessary for you. If that doesn't work and you really want to fight it, see if you can find other cases where they have approved another off-label medication. If you can show that their decision is based on financial reasons rather than medical, you can try accusing them of practicing medicine without a license. Finally, if they have a medical review board that has made the decision, you can ask for the names, practice addresses and license numbers of the doctors and report them to the state medical board for malpractice because they countermanded your doctor's recommendations without examining you or seeing your full medical file. They still may stand by their decision, but sometimes if you cause enough trouble, they'll go ahead and approve it to get you off their backs.

Here is a link to some recent info on Actiq and its REMS:
http://updates.pain-topics.org/search?q=actiq

At the top of the page is an announcement about the FDA's approval of two new generic versions of Actiq that should be available soon. (Maybe with more competition, the price will come down some.) If you'll click on their "Risk Minimization Plan" link, you can download the new REMS for Actiq. Further down the page is an article about the new REMS on the three medications (including Actiq) that I mentioned.

Last but not least, if you do end up having to face possible withdrawal symptoms, talk with your doctor about possibly prescribing Zanaflex to reduce the symptoms. I recently talked with a pain management specialist who told me he has had great success with prescribing Zanaflex for patients who, for whatever reason, have to go through withdrawal.

Oh, one more thing. Have you ever looked into an intrathecal pain pump? Because the medication is delivered directly to the spine, it can usually provide more pain relief with only a tiny fraction of the medication. Most people who use a pump also have oral meds for breakthrough pain. Here's a link to more info on the pump: [URL= http://www.healthcentral.com/c...mps.html]Intrathecal Pain Pump[/URL] We also have a thread here in the forum where everyone who uses a pain pump gathers to discuss it: “Willing to share experience with intrathecal morphine pump implant”

Good luck! I sincerely hope you're able to convince your insurance company to cover the medication you need.

Best,
Karen


Karen Lee Richards
ChronicPainConnection Expert
 
Posts: 218 | Registered: 03-16-2007Reply With QuoteReport This Post
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My doc is trying to appeal the decision but does'nt have high hopes. Im on a generic that is just called oral transmucosal fentanyl citrate by the Anesta corp. Still incredibly expensive. Thanks for the suggestions. Has anyone experienced the withdrawal from actiq? I'd like to know what I may deal with.
 
Posts: 22 | Registered: 01-11-2010Reply With QuoteReport This Post
posted Hide Post
quote:
Originally posted by Karen Lee Richards:
Actiq is one of three drugs that the FDA has applied new and unique REMS to. I fear this may be a sneak preview of what lies ahead for all opioids. However, I'm not sure your insurance company's denial necessarily has anything to do with that. More and more insurance companies are refusing to pay for off-label uses of medications, particularly when the medications are expensive. It's simply a way to save money.

First, the best thing you can do is appeal the insurance company's decision and ask your doctor to intervene and tell them the Actiq (or its generic) is medically necessary for you. If that doesn't work and you really want to fight it, see if you can find other cases where they have approved another off-label medication. If you can show that their decision is based on financial reasons rather than medical, you can try accusing them of practicing medicine without a license. Finally, if they have a medical review board that has made the decision, you can ask for the names, practice addresses and license numbers of the doctors and report them to the state medical board for malpractice because they countermanded your doctor's recommendations without examining you or seeing your full medical file. They still may stand by their decision, but sometimes if you cause enough trouble, they'll go ahead and approve it to get you off their backs.

Here is a link to some recent info on Actiq and its REMS:
http://updates.pain-topics.org/search?q=actiq

At the top of the page is an announcement about the FDA's approval of two new generic versions of Actiq that should be available soon. (Maybe with more competition, the price will come down some.) If you'll click on their "Risk Minimization Plan" link, you can download the new REMS for Actiq. Further down the page is an article about the new REMS on the three medications (including Actiq) that I mentioned.

Last but not least, if you do end up having to face possible withdrawal symptoms, talk with your doctor about possibly prescribing Zanaflex to reduce the symptoms. I recently talked with a pain management specialist who told me he has had great success with prescribing Zanaflex for patients who, for whatever reason, have to go through withdrawal.

Oh, one more thing. Have you ever looked into an intrathecal pain pump? Because the medication is delivered directly to the spine, it can usually provide more pain relief with only a tiny fraction of the medication. Most people who use a pump also have oral meds for breakthrough pain. Here's a link to more info on the pump: [URL= http://www.healthcentral.com/c...mps.html]Intrathecal Pain Pump[/URL] We also have a thread here in the forum where everyone who uses a pain pump gathers to discuss it: “Willing to share experience with intrathecal morphine pump implant”

Good luck! I sincerely hope you're able to convince your insurance company to cover the medication you need.

Best,
Karen


You are spot on. Great advice folks I would follow this.
 
Posts: 1 | Location: Philadelphia Pennsylvania | Registered: 03-12-2010Reply With QuoteReport This Post
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I have been following the discussions and problems people with chronic pain have been having in obtaining Actiq, largely since the institution of the first REMS program with a fast-acting narcotic, Onsolys. Since then, everyone one of the drugs in this category were approved with a similar REMS program. Cephalon, which now makes its own generic, is the one of only two that are excluded, for the moment but they have submitted a REMS program to the FDA, per public information in their quaterly minutes so I expect that could be changed at any time. I too suffer from chronic pain and my insurance company continues to cover it but it requires a fair amount of work on the part of my physicians to get the approval. The only thing that I have noticed is that the REMS program specifies the following:

The Oral Transmucosal Fentanyl Citrate (OTFC) Risk Management Program (RMP) is designed to address three key potential risk situations:
1) accidental ingestion of OTFC by children
2) improper patient selection (prescriptions to and usage by opioid non-tolerant patients)
3) diversion or abuse.

Thus, while there is mention throughout the document of it being targeted for cancer patients, when they discuss the use of the drug the only improper use is in children and in patients not already on long-term medications. When I worked at the FDA and was working on a guidance document, I had a discussion with one of the FDA lawyers about a number of issues but among them was what defined the indication. He pointed out to me that strictly speaking, the indication was for the prevention of a specific illness, the population for whom it was intended was not part of the indication but part of the population. I have wondered if that is one of the reasons they have not insisted that cancer be part of the indication in there REMS programs. I have not been at the FDA for a while and am not familiar with the internal discussion (which I could not disclose if I could) but I have wondered if they have the legal authority to describe the indication as cancer patients with pain. Further, the drug Fentora was studied for multiple indication in 18 month trials, and while successful the application was denied out of concern for safety. With regards to withdrawal sxs from the oral fast acting narcotics as I have stopped them on several occasions and am currently trying to do so given the political situation of the day (i.e. I anticipate not having it available in a short period of time) I find they are dose dependent, the lesser the dose the less the effects and that the symptom that is more prominent with these is a feeling of tiredness and exhaustion for a few days along with some GI sxs and difficulty with temperature regulation but these are not as prominent as stopping e.g. the fentanyl patch. This may be very individualized so I don't know how it would be for others.
 
Posts: 1 | Registered: 04-18-2010Reply With QuoteReport This Post
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gg2007,

You have a lot of knowledge about the actiq/fentora dilema. I was on Fentora for 2 1/2 years and then BCBS waited for my new authorization to come up, and BAM they gave me they ole' "its for cancer breakthru pain" crap. I went thru all they appeals and they just kept giving me the same sentence. Truely. I have Sarcoidosis all over my body, but the worst is my heart, it causes terrible chest pain from scar tissue over the nerve endings. It is permanent. I also have small fiber neuropathy, which can cause even my skin to hurt so bad, I can't wear clothes. Yes, I meet all the requirements, for taking fentora, except, darn it , i don't have cancer!!! (I am being a wise guy, please no hate mail) I just want to know from them, what makes cancer break thru pain, worse than the chest pain that I have, that is so bad sometimes it makes me pass out??? who plays God and says one persons pain is worse than anothers. If on a scale of 1-10, i say 10, and they say 10, isn't that the same???Sorry, this just makes me crazy.
 
Posts: 1 | Registered: 12-04-2010Reply With QuoteReport This Post
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