My chronic pain story & my struggle with Medicare to get approval for Fentanyl med

I must apologize for not posting again sooner but I have copied and pasted my previous post and then added to it with updated information.

I have been fighting with a variety of Medicare insurance companies over the use of fentanyl medications I've used to help with my chronic pain conditions. I've been suffering for 18 years and always get caught up in the cancer vs non-cancer pain situation. Is there anything more ridiculous than this? All it is are insurance companies looking for any way NOT to pay for these expensive medications. Of course, the other issue is how insurance companies continue to charge exorbitant amounts for these meds.

I've been on all the the other pain meds and the only one that provides me relief are the fentanyl meds, but not the patches for some reason. Usually the insurance company will begin paying and after a while will stop, claiming that since I do not have cancer, it is not covered. I've argued with the pharma companies about expanding their FDA approval to no avail.

I've had at least 3 or 4 Administrative Law Judge (ALJ) hearings, where my doctor also testified, but we always lost. I was just on generic Actiq for 4 years and the insurance company stopped approving it for me.

My doctor was able to get a prior authorization for 2014 for Subsys, which is a fentanyl oral spray however unless I get to catastrophic care, the cost is prohibitive. For 120 sprays (4 a day), the retail cost is OVER $9000!!!!!

The bottom line is: it is hell to live with chronic pain but to have to fight constantly to get medicinal relief is almost too much to bear. Each month when I go to my pharmacy my stomach is in knots. always expecting a problem. Is this any way to treat people? How humane a society are we if sick people have to struggle so hard to get relief from their pain? This situation drives me crazy!!!

MY CURRENT SITUATION:

My Medicare prescription insurance stopped covering generic Actiq, after paying for it for several years. They required a prior authorization (PA) and denied my doctor's request for coverage. He was able to get a PA for Subsys until 12/12/14. Subsys is not in their formulary. The retail cost for this med is unconscionable - a month's supply (240 = 8 a day) costs close to $25,000!!! So, 4 a day would run around $13,000. The only way to afford this is to be in catastrophic care, so the monthly cost for me is $950.00. Our financial situation is in ruins.

What really scares me is the new year. Even if my doctor can get another PA for Susbsys (I don't think they would approve it), I cannot afford it. With both Actiq and Fentora out of the picture, my future is bleak. I would have to go through detox and live with the constant pain. My quality of life would be gone and I've questioned whether it would be worth living. These are situations that disabled people should not have to face. I feel depressed, defeated, frustrated and very angry. Thanks for letting me vent! What's happened to our country?

Hi Iziggy,
Catastrophic care comes into play once you've spent something like $5,500 in a year on your meds. This includes the meds Medicare pays for. As my first Rx of Fentora costs $12,000 or thereabouts I am immediately covered. Our income is so low, $1,767 a month of SS benefits, we qualify for the extra care program which covers the donut hole. In short, I pay nothing for Fentora or any of my drugs.

This is all cancer related. Fentora is labelled for cancer pain and is used off label for other CP symptoms. This makes it a real gritch to get a prior authorization through. It is not the ins. Cos. that are charging for the drug, it's the manufacturer, Cephalon. They have a coupon thing that you should check out.

You mentioned the use of subsys 8 times a day, I am familiar with other fentanyl IR and ER products but 8 seems like a lot. I'm on 5 times a day of Fentora and that's pushing the limits. Check into the extra care program with Medicare. Your biggest hurdle is to find a dr. With a staff that is willing to fight for you. I have the staff of the local cancer Care Center and all their resources as my advocate and it's still like pulling teeth to get the PA through Humana but it's worked for 41/2 years now. Best of luck and the least of pain . . . Q[img]

The problem here is the FDA labels, "for the use of pain associated with cancer " any drug so labeled gives the insurance companies an outlet for refusal and of course they're going to take it.

There have been several petitions to the FDA to change the labeling and they seem to die in the petitioning stage for lack of medical backing. Meaning not enough Doctors supporting it and showing good cause to change it and more support against the change by PROP.

The reality is that $12,000 cost is as much as one person makes a year on SSI /SSD.

Like Quincy I have medicare but qualify for extra care and chose a medicare advantage plan with Humana. The state covers the premium as well as copays and as long as I use generic meds what that means is I pay nothing for my MS contin and have one COPD med that is tier 3 and is $487 and I pay $6.84

Thank you all for your help and support. When I first posted, the moderator informed me that it was an old thread and I should copy and paste my information as a new post.

I do not qualify for any assistance programs due to my wife's income which is approx. $40,000-$50,000 yearly. It varies due to the nature of her job. I just get Social Security. I was getting SSA disability and private disability benefits but when I turned 65 the private insurance stopped. I have been ill for many years, chronic pain being one of my problems. I know the prices are set by the drug manufacturer and they are out of control. My pain doctor always says the system is broken, which is obvious. His office is wonderful, they have always been supportive and fought for me. I used to take generic Actiq, which put me in catastrophic coverage by March of each year.

The beginning of 2015 will be brutal for me. I do not have the supplemental Medicare plan and am not sure if it would help with my prescription drug problem. I will talk to my doctor about the intrathecal pain pump.
My doctor originally had gotten a PA for Subsys - 4 times a day. Later that year, fearing the inevitable, he requested a new PA for Subsys 8 times a day. I used to take Actiq or Fentora 4 times a day but I find the Subsys does not work as well as the two other Fentanyl products so I often will use the 8 a day and still suffer with high pain levels at time. I find my wife in tears at time when she sees me suffering so. I think she remembers me from years ago. I was a self-made man, who worked in the computer industry and was successful until my illness.

Again, thank you all for your support. I wish you all better days.

Ira

Hi Quincy17... I would be able to get Fentora with the AARP Enhanced Medicare supplemental? How does that work? Wouldn't it still come down to whether I have cancer or not? I hope you have the answer, that would be wonderful. I had heard the they were trying to get approval for Fentora for non cancer pain but that's all I know.

Please respond back!!!

Thanks,

Ira

Iziggy,
I just rechecked the page and you will need a prior auth. I know that this is a lot of hassle but if it works you could save over $9,000 per month as well as get the pain relief you need . . . Q

PS: Companies that use express scripts will be removing Fentora from their formulary as of 01/01/2015 but cos. that use Caremark will still allow it. I am thoroughly disgusted by these moves. I had to lose my life savings and all my hopes of ever owning a house due to this cancer. When I applied for SSDI I was granted fairly quickly, 9 months but it was another 15 months before Medicare approval. I hope for your sake that getting a prior approval from AARP is possible. The plan only costs about $99 a month.

Post Edited (quincy17) : 9/17/2014 11:59:32 AM (GMT-6)

Tirzah,
That's a real good point. John will need to check to see if the Medicare sup. covers Transmucosal-bucosal Instant Release Fentanyl Risk Evaluation and Mitigation Strategy (TIRF REMS). I know that the CVS where I get my Fentora has no problem with my BC BS sup. but who knows about AARP? John, looks like another hoop to jump through. . . Q

Yeah, there's no way of telling state to state. Like NM has a really great medical pool for people that have been turned down for pre- existing conditions. It's on a sliding scale and is run by BC BS. But just because we have that doesn't mean that BC BS is going to offer that in every state . . . Q

My PM appointment was yesterday and he put me back on the Fentanyl patch.  It's a 72 hour patch and I don't feel loopy like the ones I tried in the past.  It as $60 for 10 which is a monthly supply, so $6 a piece.  I can't complain about that.

Hi, I am on SSD and have a AARP pharmacey policy that I pay 129.00 a month for. I take over 15 scripts a month. I use Fentanyl patches though I change mine every 48 hours as I was getting to much break through going 72 hours. I have never had a problem having them fill the patches. There is an article in this months AARP Bulletin about Medicare revises drug rules it is in September 2014 vol 55 no 7. It is an interesting article. about how they have to cover certain medicatons now. I wish you the best.

Excellent news, jpr,
I was just wondering for the prices sake if somebody asked me.
I had a patch dump on me while gardening, not good. Best of luck . . . Q

Hey again Iziggy...Just wondering if you have issues with mal-absorption?

~~Dixie

I asked because I struggle with mal-absorption due to a surgically altered stomach pouch.  Medicines often react adversely because of this.  My PM doctor has no clue and even stated "there's no difference".  He's wrong...There's a BIG difference in bioavailability, etc.  I feel for you because I know the angst of pain unmanaged.  I hope you find some answers soon=)

Dixie